[Update (August 2016): Since writing this post in 2011 about an odyssey that began in 2009, our hypothesis that Amy has fructose malabsorption has been disconfirmed. I hope the information in this post will still be of use to those who have similar hypotheses, or confirmed diagnoses. Amy still suffers from periodic episodes of extremely painful abdominal cramping and some of the other symptoms described in the original post, but our current hypothesis is that these are psychosomatic, the result of life-long challenges in processing emotions such as fear and anxiety (similar in some respects to the patterns described by Scott Strossel in My Age of Anxiety). Others experiencing an epic digestive health odyssey might benefit from considering potential psychological or emotional factors – in addition to the physiological factors – that may be contributing to the suffering. We hope the information here will be instrumental in ameliorating, or at least explaining, some of that suffering, or at least offer some consolation that you are not alone in the intense pain, desolation and desperation that often arises on such a journey.]
After over two years of intermittently intense suffering, an interminable series of medical consultations with a variety of healthcare professionals, and numerous indefinite diagnoses, a dietician recently helped us converge on a new explanation for my wife's digestive health problems: fructose malabsorption (FM). Having experienced some relief from recently starting an elimination diet, it appears that Amy's small intestine does not properly absorb fructose and its many polymerized forms such as fructans, raffinose and other Fermentable Oligo-, Di- and Mono-saccharides And Polyols (FODMAPs). These are the sugars contained in many fruits, vegetables and whole grains. As we currently understand her predicament, when she consumes foods or drinks – or even chews gum – containing moderate amounts of fructose, a fructose-glucose ratio greater than 1:1, or any amount of other FODMAPs, they are not absorbed in her small intestine but pass through to her large intestine. The unabsorbed sugars feed bacteria, and the resulting fermentation leads to a range of symptoms that have included varying degrees of abdominal pain (3 extreme episodes involved pain "worse than childbirth", vomiting and trips to the emergency room), bloating, belching, diarrhea, decreased appetite and visceral hypersensitivity. During this time, she has also experienced skin rashes, muscle and joint pain, dry eyes, dry mouth, fuzzy head, fatigue and depression, but at this point we're not sure whether or how these symptoms may be related to fructose malabsorption.
Throughout this period, we have engaged in numerous medical consultations with Amy's primary care physician, colorectal surgeon, radiation oncologist, opthamologist, two gastroenterologists, an internist, and a rheumatologist (who referred us to the dietician), as well as various attending physicians during her visits to the emergency room. She has undergone blood tests, urine tests, stool tests, X-rays, CT scans, an MRI scan, a HIDA scan and a lip biopsy. Other diagnoses that have been considered (and eventually excluded) include gallbladder malfunction, Crohn's disease, Sjogren's Syndrome and chronic radiation enteritis (suspected as a delayed reaction to her 2005 anal cancer treatment). She has also been checked for celiac disease, gluten intolerance, H. pylori and intestinal parasites (all negative).
Candidates that have not yet been definitively ruled out include ileus, bowel obstruction and small intestinal bacterial overgrowth (SIBO) syndrome (in which the unabsorbed sugars are fermented in the small intestine rather than the large intestine). Mast cell activation syndrome (MCAS), a relatively unknown and ill-defined disorder in which mast cells precipitate an allergic overreaction (which in some people may include anaphylactic shock), is the most recent addition to the candidate list. Irritable Bowel Syndrome (IBS) is a much better known but not not much better understood disorder which has a high degree of symptom overlap with fructose malabsorption (and SIBO); we're note quite sure what to make of IBS, but Amy's IBS-related symptoms have significantly improved through the dietary management of fructose. Some of these conditions are suspected of being interrelated, and it may be the case that several of these diagnoses apply.
During a visit to Amy's gastroenterologist last Friday, he suggested that MCAS may be the genesis her FM/IBS symptoms – possibly triggered in response to an earlier gastrointestinal infection – and so she is preparing to add antihistamine and quercetin to her daily regimen to reduce the likelihood of future [over]activation. He also suggested that the rapid intestinal transit that was observed in an X-ray of her upper GI with small bowel follow-through may be a factor – fructose may not be absorbed in her small intestine because it simply isn't given enough time – and so he also recommended a daily dose of Imodium (Loperamide) to slow down the intestinal transit. I hope to have more to say about this trajectory in a future post.
Exploratory abdominal surgery was recommended by a few different specialists at earlier stages of her digestive health odyssey; thus far, concern over possible complications resulting from gastrointestinal surgery – which can introduce as well as reduce digestive problems – has steered her away from that path. However she did undergo hyperbaric oxygen (HBO) treatment at the Center for Wound Healing and Hyperbarics at Swedish Edmonds this spring to treat radiation enteritis, when that seemed to be the most likely diagnosis. HBO is a relatively unknown and minimally invasive treatment that appears to be effective for several conditions, and we were initially hopeful about prospects for improvement. Although she received excellent care over the course of her treatment, the lack of significant improvement in her digestive symptoms after 37 "dives" was a strong signal that radiation enteritis was not the correct diagnosis. She also underwent a course of Xifaxan (Rifaximin) antibiotic treatment for SIBO at the start of her HBO treatment, but the persistence of symptoms during that period lead us to believe that SIBO is/was not a primary factor.
Fructose malabsorption seems to be relatively unknown, at least in the U.S., and there are many aspects of the disorder that are still poorly understood. A review of studies on fructose malabsorption, most of which are based on results of hydrogen breath tests (HBTs), suggests that some level of fructose malabsorption may be present in more than a third of the "healthy" population in western countries, where high fructose corn syrup is increasingly used in popular consumer foods. HBT evidence of fructose malabsorption is present in a much larger proportion of those exhibiting symptoms associated with functional gastrointestinal disorders (FGIDs). However, there is some disagreement about the application and interpretation of HBTs, as well as the correlation between HBT results and FGID symptoms; there is also the risk of triggering severe reactions on the way to a "positive" test result, as some fructose must be ingested prior to measuring the hydrogen in the breath. In Amy's case, she has not taken an HBT, but we consider her body's positive response to a diet restricting fructose and other FODMAPS – and the negative response whenever she unintentionally eats even small amounts of high-FODMAP foods – to be strong evidence that fructose malabsorption is at or near the core of many of her digestive health problems.
Given the different tests, diagnoses and treatments Amy has undergone during this odyssey, one of the motivations behind composing this post is to share some of this experience in case it might help others who are unknowingly suffering from fructose malabsorption yet have only been tested, diagnosed or treated for other diseases or disorders. Amy is an indomitable e-patient – engaged, empowered, equipped and increasingly expert in her own medical care – and I'm hoping her journey may help inform or inspire others. If not for her perseverance, she may have undergone other, potentially more invasive or risky treatments, and might still be suffering [more] from the often debilitating symptoms.
That is not to say she is not still suffering; the source of suffering has simply shifted from severe reactions to food to severe restrictions on food. There is no known cure for fructose malabsorption, and it appears the most effective treatment is an austere low-FODMAP diet, devoid of most fruits, vegetables, grains and other sources of sugars that can feed the bad bacteria. Based on some recent negative food reactions, we suspect that Amy may also be lactose intolerant – lactose being another sugar – and so she is also currently avoiding all dairy products. Years ago, she discovered that foods high in saturated fat triggered negative reactions – her digestive health odyssey actually began decades ago – so those foods were already eliminated from her diet.
At this point, nearly all the things she most enjoys eating and drinking – including many fresh fruits and vegetables, whole grains, cheeses, chocolate, wine and beer – are now on the "avoid" list. Many activities and places that used to bring her joy – such as growing fruit and vegetables in her garden, exploring farmers' markets, trying new restaurants – are now also on an "avoid" list, serving as depressing reminders of the life she enjoyed until recently. As one among many examples, the strawberries in her garden [shown in the photo at the right] recently achieved optimal ripeness and were ready for harvest, and although they are a generally "safe" food in the low-FODMAP diet, she had a negative reaction to eating a store-bought strawberry a few weeks ago, and so she could only pick but not eat them. One of the many puzzling dimensions of this disorder is why she can no longer tolerate so many nutritious foods she used to eat regularly; it's as though some kind of switch has been flipped. While we have found no evidence that fructose malabsorption is a life-threatening disorder, it is certainly proving to be a lifestyle-threatening disorder, and the psychological adjustments are at least as challenging as the physical ones.
The good news is that after six weeks on the diet, many of her physical symptoms have been greatly alleviated; the bad news is that many of the generally "safe" foods she has tried to re-introduce so far have re-triggered negative physical – and emotional – reactions.
Margaret Mead famously observed that
Always remember that you are absolutely unique. Just like everyone else.
This individual and collective uniqueness is a significant factor for those suffering from fructose malabsorption ("FMers") and following a low-FODMAP diet, in that foods that are safe for one FMer – or even most FMers – may not be safe for another FMer (e.g., strawberries). Further complicating matters, heating (cooking) and cooling (refrigeration) affects the chemistry of foods, as does ripeness (in the case of fruits and vegetables), and so foods that may be safe in one state may not be safe in another. Foods that might be safe in isolation may not be safe when consumed soon before or after other foods that also might be safe in isolation. The set of safe foods for a given FMer can also change over time. We keep hoping it will get better, that her gut will heal and she will eventually succeed in reintroducing some of the eliminated foods. It appears that "getting better" involves some combination of radically adjusting the diet and the associated gustatory expectations and desires, as well as managing stress through exercise and mindfulness meditation … and practicing a great deal of patience.
Amy is currently at the most restrictive phase of the low-FODMAP diet. She has eliminated everything but fish, chicken, lean beef and pork, oatmeal, white rice, rice pasta, rice crackers, quinoa, buckwheat, banana, grapefruit, portabella mushrooms, mustard greens, Swiss chard, spinach, almond milk, an assortment of seeds, oils and nut-based butters, and decaffeinated coffee. The photo on the right shows the single shelf containing all of the non-perishable foods she can safely eat at this stage [since taking the photo, we discovered that the shallots in the bowl at the right are not low-FODMAP and have been eliminated]. We hope this is a temporary low, and she will eventually reach a stage where we will need more than one shelf to store her food.
After achieving a state of greater digestive balance in the first two weeks, Amy started experimenting with reintroducing other generally "safe" foods (e.g., blueberries), several of which have resulted in a mostly mild recurrence of symptoms. Just this week, she had an extreme bout of abdominal pain – almost on a par with the bouts that brought us to the emergency room – that, as far as we can determine, resulted from eating a few sea salt & cracked pepper flavored potato chips. We later discovered that one of the other seasonings listed in the ingredients included onion powder, which is on the low-FODMAP "avoid" list, reminding us of how diligent and vigilant we need to be about checking ingredients.
Due to the cumulative effects of unabsorbed sugars in the gut, low-FODMAPpers are advised to wait 72 hours between experiments, so as to be able to correctly assess the credit (or blame) for any symptom recurrence. Another recent failed experiment occurred after eating 1/2 of a leftover baked potato (with a small amount of "safe" margarine and no skin) a few weeks ago. The next day, shortly after eating her standard breakfast of plain oatmeal, she experienced the waves of sharp abdominal pain that characterized her worst reactions. We have since learned that starch can be problematic, at least in the early phase of the diet, and that refrigerating potatoes increases their starch content. We also discovered that oatmeal contains starch, so the abdominal pain may have been triggered by an inadvertent starch overload. We hope to redo the experiment with freshly cooked potatoes, which are a generally "safe" food, during an otherwise low-starch period, in the hope that they will prove safe for her to eat again.
Amy sometimes fears that she will never be able to reintroduce eliminated (or new) foods, regain weight or acquire the nutrients – through food – that her body needs. She has been compensating for nutritional deficits through supplements including UltraClear Medical Food and calcium citrate, and has also been experimenting with the probiotic VSL#3; many supplements contain FODMAP ingredients, so she needs to be careful with those as well. Over the past 2 years, she has lost 20 pounds (9 kg) and now weighs 110 pounds (50 kg); she stands 5'8" (173 cm) tall, yielding a body mass index of 16.7, well below the "underweight" threshold of 18.5. This is particularly worrisome because none of the foods that have proved safe for her to eat [yet] are foods that can help her gain weight. Even at the worst / lowest point during her recovery from radiation and chemotherapy treatment, she weighed 117 pounds (53 kg). The lack of absorbed nutrients is likely contributing to osteopenia bordering on osteoporosis. On top of all this, her hair has also been thinning [again] throughout this time. The photo at the right was taken a little over a year ago, on the 5-year anniversary of her successful cancer treatment; little did we know then that this would represent a relatively brief crest amid the sporadically crushing waves of health challenges.
When Amy was diagnosed with anal cancer in 2005, the early stage of the diagnosis gave us confidence that there was a high probability the treatment would be successful (it was), and the side effects would eventually subside (they have). When she was diagnosed with multiple sclerosis in 1986, the long gaps between her initial exacerbations gave us hope that she would not suffer the steady and progressive deterioration that some with MS experience (she has not). The fructose malabsorption diagnosis – and low-FODMAP dietary treatment – have left her feeling more isolated and depressed than any prior health challenge. It often seems like no one – at times, including me – fully grasps the magnitude of the restrictions she may be facing, possibly for the rest of her life.
As I noted above, one reason I am writing this post is to share her (our) experience of this odyssey, in the hope that it might help others become more aware of a condition that may be widely experienced (to varying degrees) and not [yet] widely diagnosed or appropriately treated, especially in the U.S. Our hope is that we might save other sufferers some of the pain, time and money – not to mention fear, uncertainty and doubt – that we have experienced over the past several years. I plan to share more of the ongoing odyssey in future posts, similar to the "cancer counterinsurgency" series I posted during Amy's anal cancer diagnosis, treatment and recovery (which has generated more comments and email than anything I've written). We've discussed the prospect of Amy starting her own blog to catalog her journey, but for now, she is focused more on learning than sharing, as she adopts and adapts new ways to nourish and nurture herself through nutrition, exercise and stress reduction.
I'll finish off this post with a few resources that I / we have found particularly helpful:
- Heidi Turner, RD, is the Medical Nutritional Therapist at Seattle Arthritis Clinic, which we first visited when Sjogren's Syndrome was a candidate diagnosis (subsequently ruled out via lip biopsy). Heidi helped us converge on the fructose malabsorption diagnosis, and she has continued working with Amy through office visits, telephone consultations and email to help her navigate to a safe, if severely restricted, baseline diet and gradually experiment with reintroducing eliminated foods. Her web site offers a number of resources to support the elimination diet (which can be applied or adjusted to support other digestive disorders).
- The Irritable Bowel Syndrome Self Help and Support Group (IBSgroup.org) has a number of high signal-to-noise ratio forums; the thread on Printable FODMAP diet chart for your convenience, in particular – especially the posts by pseudonymous IBSGroup user Common Response – has more valuable online information about the experience of fructose malabsorption, lactose intolerance and a low FODMAP diet than anything we've encountered.
- A blog maintained by A.V. Thompson has a number of posts describing her insights and experience with fructose malabsorption – including numerous baking experiments – from January 2008 thru May 2010; she recently started posting again after a 1+ year hiatus, and I hope she will continue sharing her journey(s). Her post – and others' comments – on What is Fructose Malabsorption Disorder? is very helpful, as is her Google site on "fructmal".
- A collection of pages on Information on Fructose Malabsorption compiled by an anonymous FMer in UK, including tips for living with fructose malabsorption, is also very useful.
- The Eastern Health Clinical School of Monash University in Australia appears to be at the forefront of clinical research into fructose malabsorption, FODMAPs and other related issues involving gastroenterology and nutrition. Two researchers from Monash – Peter Gibson and Sue Shepherd – were the first to expand the focus from fructose to FODMAPs [Personal view: food for thought – western lifestyle and susceptibility to Crohn's disease. The FODMAP hypothesis. Alimentary Pharmacology & Therapeutics, 21(12):1399–1409; June 2005]. Another article they co-authored, along with other colleagues at Monash, is the single most useful scholarly overview I've found yet on fructose malabsorption [Gibson, PR, Newnham, E, Barrett, JS, Shepherd, JS, and Muir, JG Review article: fructose malabsorption and the bigger picture. Alimentary Pharmacology & Therapeutics, 25 (4): 349-363, Feb 2007]. A more recent paper by Gibson & Shepherd, Evidence-based Dietary Management of Functional Gastrointestinal Symptoms: The FODMAP Approach (Journal of Gastroenterology and Hepatology, 25(2):252-258, Feb 2010) is also quite useful.
- Sue Shepherd also has a dietician practice in Australia, Shepherd Works, and has posted many resources regarding fructose malabsorption, FODMAP intolerance and other digestive disorders such as celiac disease, irritable bowel syndrome and lactose intolerance. These resources include research articles and books such as the The Low FODMAP Diet and The Food Intolerance Management Plan [unfortunately, the shipping charges from Australia may make these prohibitively expensive for some prospective American readers].
- Another Monash University researcher, Jaci Barrett, is affiliated with another Australian group of dieticians, Diet Solutions, with clinical experience and research involvement in fructose malabsorption, FODMAP intolerance and a number of other digestive disorders. Jaci was kind enough to send me a paper she co-authored with Peter Gibson [Clinical Ramifications of Malabsorption of Fructose and Other Short-chain Carbohydrates, Practical Gastroenterology, Aug 2007] when I contacted her seeking clarifications regarding references in the Wikipedia entry for fructose malabsorption; the figure at the start of this post is from that paper.
- An August 2010 article on The FODMAPs Approach — Minimize Consumption of Fermentable Carbs to Manage Functional Gut Disorder Symptoms in Today's Dietician by Boston-based Kate Scarlata offers a good overview that balances breadth and depth and may be more generally accessible to a non-clinical audience. She is also the author of The Complete Idiot's Guide to Eating Well with IBS, which includes coverage of fructose malabsorption and FODMAPs and has several garnered many positive Amazon reviews, including several from other dieticians.
- IBS–Free At Last! (IBSfree.net) is a blog by Patsy Catsos, a dietician in Portland, Maine, that seems particularly attuned to FODMAP-related issues. She is also author of the similarly titled book, IBS–Free at Last!: A Revolutionary, New Step-by-Step Method for Those Who Have Tried Everything. Control IBS Symptoms by Limiting FODMAPS Carbohydrates in Your Diet. Unfortunately, due to Amy's suspected lactose intolerance, the low-FODMAP recipes on this blog – and most other low-FODMAP recipe sources we've discovered thus far – are off limits for her.
- Gabor Mate's 2003 book, When The Body Says No: Understanding the Stress-Disease Connection, makes a compelling case for the the role stress plays in the onset and progression of many chronic conditions such as IBS, cancer, multiple sclerosis, arthritis, diabetes and heart diseases. The author, a practicing physician, also emphasizes the importance for doctors and other medical professionals to pay attention to patients' life stories – not just their symptoms – in their efforts to promote effective healing.
- Jon Kabat-Zinn's 1990 book, Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, and the associated mindfulness meditation practice audiotapes and CDs, offer very helpful guidance in managing the stress associated with the diagnosis and treatment fructose malabsorption (and many other maladies).
I want to emphasize that neither Amy nor I have any formal training in medicine, nutrition or biochemistry; the information shared here is based on the personal experience of a long-time sufferer and her spouse. Based on our interactions with various health care professionals over the last several years and my own reading of over 40 peer-reviewed articles in medical research journals over the last several weeks, we appear to be at the beginning stages of a very steep learning curve involving a condition – or perhaps several – that do not seem very well studied or understood. I also want to highlight the fact that we are still not sure whether fructose malabsorption is the primary diagnosis or is secondary to other conditions (such as MCAS, IBS and/or SIBO). This is why the subtitle of this post is the latest milestone – vs. diagnosis – on a digestive health odyssey … and our epic journey continues.
While we expect – or hope – that most people will never experience the symptoms of fructose malabsorption, or the challenges of the restrictive diet used in its treatment, we also hope that those who are suffering from these symptoms – or know someone else who is – and thus may be candidates for the diagnosis and dietary treatment, might benefit from this summary of our experience thus far, and seek out personalized care and guidance from appropriately trained health care professionals.
Comments
48 responses to “Fructose malabsorption: the latest milestone on an epic digestive health odyssey”
My thoughts are with the two of you Joe.
Tim: thanks for your kind words of support.
Have you looked into this? http://freakonomicsradio.com/the-power-of-poop.html
Agathe: I was not formally familiar with fecal transplants (aka transpoosions), but following the the link you suggested to a 20-minute Freakonomics radio segment – complete with transcript and several interesting reader / listener comments – about The Power of Poop, “a couple of gutsy investigators [Thomas Borody and Alex Khoruts] willing to go to a dark place”, offers an interesting new avenue to explore.
It’s interesting that gastroenterologist Thomas Borody is from Sydney, offering yet another example of innovation relevant to intestinal disorders (and, perhaps, multiple sclerosis) arising in Australia. Alex Khoruts was co-author of a recent, somewhat more scholarly, commentary on Therapeutic transplantation of the distal gut microbiota [Mucosal Immunology, (2011) 4, 4–7].
Thanks for the tip!
Some random comments:
Joe, you mentioned Amy’s recent reaction to strawberries – how very disappointing for her 🙁 I wonder if it’s because these are very high in salicylates and amines? Amy’s reaction to the potato bake may have been because of the type of potatoes used – the ‘safest’ ones to use are peeled, white potatoes (peels of many and fruit and veges are very high in natural food chemical). All other potatoes, including sweet potatoes, are moderately high in salicylates, and thus can be problematic.
If FODMAPs are a problem for Amy, it’s a given that lactose is because it’s the D for Disacharrides. Lactose-free milk is recommended in the FODMAP diet so you don’t have to go completely dairy free – is it available where you are? In Australia you can buy lactose-free milk, cream, and ice-cream.
Since starting the Failsafe Diet, I too have been having hypersensitive reactions to many foods that I used to eat in abundance. Apparently this is very normal and the hypersensitivity begins to settle over a weeks. For me, the hypersentivities that have remained are related to foods I only now realise I am chemically sensitive to – oats (which were my every-morning delight, winter and summer) and the quinoa which I replaced it with. Both of these grains now cause severe and very painful mouth ulcers and overwhelming waves of tiredness an hour or two after eating them.
The sea salt and cracked pepper chips Amy reacted to, check ALL of the ingredients against the list of problematic additives here:
http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/
Joe, I feel for you and Amy and the very difficult path you’ve both endured. It is wonderful that Amy has such a supportive partner – your empathy, compassion, intelligence and capacity for critical analysis is a unique combination. And though I don’t know either of you, I suspect Amy has these characteristics too, and so no doubt she is a wonderful partner too.
I read your post with great interest. After a life time of daily diarrhea and continual weight loss, my husband was only really diagnosed with fructose malabsorption. As a family, we too are now exploring the FODMAPs diet and have the very difficult task of balancing it with the Royal Prince Alfred Hospital (RPAH) Elimination Diet more commonly known as the Failsafe Diet.
Here are some excellent resources on the Failsafe Diet, but PLEASE NOTE, if you are on the FODMAPS diet, there are many foods in the Failsafe Diet that are not ‘safe’ for your particular condition and vice versa.
RPAH Elimination Diet Handbook
I can’t recommend this book highly enough – it’s $22AU and worth every penny
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/handbook.cfm
Succinct but VERY comprehensive – includes list of foods and additives to avoid
http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/
Introduction to the ‘how’ of the diet
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/sed.cfm
The development of the Failsafe Elimination Diet (research and clinical trials)
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/development.cfm
Food additives list – the problematic ones to avoid
http://www.fedupwithfoodadditives.info/information/additives.htm
The ‘mother’ of all websites for food intolerances
http://fedup.com.au/
People who are sensitive to natural food chemicals are usually also sensitive to one or more of the common FOOD ADDITIVES. If you seem to be reacting to a store-bought product (or a medication) but can’t work out why, it might be one of the additives causing the problem.
Below is a link to the 350 food additives permitted in Australia and New Zealand.
The ‘number codes’ may not be consistent across different countries, but I think the names probably are.
About 50 food additives are likely to cause adverse reactions. They are marked in RED bold with “AVOID”
Other Additives in RED should be used, if at all, with caution.
Other additives are unlikely to cause reactions (though this not true for every individual ie citric acid can be problematic for some). This includes anti-caking agents, bleaches, emulsifiers, mineral salts, propellants, food acids, sweeteners, thickening agents, vegetable gums and vitamins.
http://www.fedupwithfoodadditives.info/information/additivesall.htm
Ria: thanks for your kind support and additional information. I’ve gone through and added embedded URLs to each of the links you’d shared, to enable other readers to more easily explore the resources you suggested (though I haven’t had the opportunity yet to fully explore them all).
I have read a bit about the RPAH Elimination Diet, and noticed the rather small intersection of foods that are “safe” for both FAILSAFE and low-FODMAP diets. Our dietician – who I believe has taken the RPAH training – has raised the issue of salicylates and amines a few times, so they are among the many considerations on our radar. And we are increasingly vigilant about reading and interpreting the lists of ingredients for the foods she does eat.
Amy has recently succeeded in adding a few foods that are low-FODMAP “safe” to her diet, and has gained a few pounds. We’re still not sure whether fructose malabsorption is the primary or a secondary factor in her digestive disorder(s). Some recent consultations with doctors and other health professionals have yielded new [partial] possible explanations, and we have a few more consultations on the horizon that may reveal more. I hope to post an update on what we’ve learned in a few weeks.
Thanks again for sharing what you’ve learned, and we wish you and your husband all the best as you navigate the challenges of your individual and collective digestive health odysseys!
Thank you for this. As a former colon cancer patient who also was diagnosed young and who is struggling with odd, painful and sometimes debilitating GI symptoms, i appreciate the lead.
Best of luck to Amy, and continued persistence and courage in the search for lasting improvement. And i would like to underscore your support for Amy as well as her courage and determination. My experience is that when doctors don’t know what a patient has, they tend to downplay the symptoms. Lack of diagnosis tends to cause a similar reaction in the patient’s entourage – if it was real, there would be a diagnosis right?
So i wanted to say it’s great that you are a supporter and not a doubter. And thanks again for sharing.
Frederique: thanks for your kinds of words of support.
Amy’s digestive health odyssey has continued along often unpredictable and inexplicable paths. In re-reading my last response to the previous comment, I realize that I have not yet followed through on my intention to post an update … so I will simply reconfirm my intention here.
Meanwhile, I wish you all the best on your own journey toward greater health!
Hey Joe and Amy,
My name is Theadora, I was diagnosed with Fructose Intolerance last year when i was 19 years old. I understand everyday is a struggle. Self control seems to be my biggest challenge. Tonight I decided to google it to see if any one out there would have any sort of blog and then i found this. Some days im just so fed up, the pain is too much for me. Once you take the sugar its irreversible and you have to wait until the symptons are gone. I look like a 4 month old pregneant women my stomach bloats so much. I would love to know amy how you get through everyday?, i feel like its unavoidable.
Theadora
Theadora: thanks for sharing some of your story here. Given that Amy seems to be tolerating some FODMAPs, we increasingly suspect that some other disorder(s) – with similar symptoms – may be the actual cause of her ongoing problems. Her most recent and currently most promising treatment support has included acupuncture and other non-traditional (or non-western) approaches and practices. Most days continue to be challenging, and we keep hoping that significant improvement is just over the horizon … but sometimes that horizon seems very far away. Unfortunately, we haven’t yet stumbled on a set of “best practices”, but we keep hoping some will emerge, and will share them when we discover them. Meanwhile, we send you our best wishes for rising to meet the challenges you are facing!
I’m so glad that I stumbled upon your blog post about Amy’s health issues. I too was diagnosed with FM last summer. 6 wks later after struggling with the low FODMAP diet I was tested for SIBO which was positive. I have since had 2 Rafaximin treatments (several months apart) and seem to be doing better along with the continued low FODMAP diet. Yes, this diet is certainly restrictive, but I’m feeling so much better and actually feel as if Ihave my life back…GI-wise. It’s not perfect by any means but it is significantly better. I have gained my weight back….and then some. Last month I connected with Kate Scarlata, RD (outside of Boston). You and Amy may want to connect with her as she recently participated in FODMAP training in Australia. She had the latest changes in food testing and was extrememly knowledageable about FM and SIBO. I left with so much new information, a diet plan and a shopping list. She has great modified recipes on her website as well. I recently began taking a probiotic which is FODMAP safe. It’s Culturelle – Health and Wellness Formula. She also recommends Pure Encapsulations Multi t/d as a safe vitamin supplement. Thank you for highlighting your wife’s journey. Wishing you and Amy many blessings! Karen
Karen: thanks for your kind words, and for sharing some of your own experience and the resources you’ve found useful. I’ve read a few things by Kate Scarlata, and have found them very informative. I had not heard of Culturelle before, so it’s good to know about an alternative. Wishing you all the best on your own journey!
No matter how the researchers cut it, patients participating in screenings had higher cure rates across the board. Furthermore, the higher the stage of cancer, the more effective were the screenings. Five-year survival (rather than cure rate) showed similar rates.
Last night I bought strawberies to make daiquiri for a gathering at a neighbor’s house this Friday for the opening ceremony of London Summer Olimpic games. I ate perhaps three strawberies and I am dying of abdominal pain today. I have been to the ER twice and each time I was told all I had was gas! They took an X ray and it showed all the bubles in my bowels. I knew I had gas but why was I having it to the extend to send me to ER! No explanation.
I know now I have fructose mulabsorption. One day I had nothing but iceberg lettuce and grilled chicken. I was sick the next 24 hours. That is when I went on the Internet (I had allergic family, knew how to do muscle tests we learned in Japan) and searched for iceberg allergy and that is when I came accross in a forum somebody suggesting to check fructose mulabsorption.
Since then I have been very careful with foods that are high in fructose (I had to give up 6% soy milk) and had been doing very well until last night. I got up with an extreme pain this morning and I still have pain almost 15 hours later. If I have glucose right after I eat something and feel that there was too much fructose, it would help me. But perhaps all of the fructose is already in the bowels, no matter how much glucose I took today, it made no difference.
I grew up on fruits and vegetables in Turkey. Yet, I don’t remember being sick. I am not going to give them up but I don’t want to be sick either. Now, what I do is make green smoothies, put oats, barley etc type of grains at the bottom a Ball/Mason jar, add green smoothies (usually 60% vegies 40% fruits) and on top add plain Turkish yogurt that I make at home, top it with nuts and seeds. Eating this type of raw foods has helped me tremendously. I was not having any problems until last night when I ate strawberies alone.
Thanks for sharing your wife’s experiences. Everything helps, scientific articles I read but others’ experiences and what works for them is what helps me!
Thanks for sharing your wife’s issues, as hard as I thought I had it, mine was nothing compared to yours. Ever since 1982 I have had diarrhea which was at first shocking, then after about a year it calmed down, but over the last 10 years or so it has worsened. I was informed at the time it was a stomach infection. I have been bloated and I thought there was a growth in my stomach, but that was nothing compared to the diarrhea though. I work on a different building site each day and i need to make sure there is a toilet onsite or a McDonald’s or else, no control. This would be almost every morning and possibly a couple of times during the day. Late last year I finally discovered with 2 Hydrogen tests that I am both Lactose and fructose intolerant. I also get indigestion a lot due to a hiatus hernia, about 2 years ago I have controlled it with a Nexium tablet each day. A dietician gave me the normal instructions but I also removed all sugar, wheat, legumes and breads from my diet. I went cold turkey, I used to love my chocolate, icecream, onions etc. I also add a desert spoon of fish oil to my new regime (mainly to help my torn shoulder tendons) which may assist but I don’t really know. I am living mainly on fish, red meat, eggs, rice cakes and slowly increasing my veggies and salads. The outcome so far is I seem to be cured to a great extent. I can now have my morning cappuccino, go out to a restaurant (once per week or so) and eat anything without issues. Well 95% of the time that is. I consider this a near-cure. Interesting to see how I am in the next few months. I also have had high cholesterol for over 20 years, i have stopped my Zocor, I will get it checked in the next few months and see if this has come good as well.
I hope my experiences can in some way help someone else reading from your site.
@Emine, @Gary: thanks for sharing your journeys. It is encouraging to read that you have both progressed beyond the dark night of the soul (and gut) and are doing better. I hope the positive trends continue.
Do you think fructose is really bad for us? Reading from your article and others comments scares me. This is not an easy problem because most foods we can buy has high fructose corn syrup on it.
@cath: I don’t believe fructose is bad for most people, but it is bad for some. I also believe that the widespread use of high fructose corn syrup is a significant health issue; perhaps the current US drought will prompt a search for alternatives.
Hi Joe/Amy: have you heard of the Specific Carbohydrate Diet? http://www.breakingtheviciouscycle.info/
I’m trying it out and I’m also restricting fructose. I’ve noticed some improvements. Hope things work out!
@HW: I have heard of SCD, but Amy has not tried it. I’m glad that you are noticing some improvements, and hope that trend continues!
I have been diagnosed through a hydrogen breath test to have Fructose Malabsorption. I have found that I have the same dietary restrictions as your wife does. People often do not understand and cannot comprehend what it is like to have this condition. The food restrictions are endless, I have found that I cannot “reintroduce” foods into my diet like most medical professionals suggest that you can over time, and this means that you have to accept that for the rest of your life you can no longer experience the joy of eating out, cooking and gardening like you used to, and simple family get-togethers and workplace potlucks become a true emotional and physical struggle and therefore are no longer fun. No one can understand the depth of the emotional depair that this condition brings unless they have it themselves. There is no simple list to follow, each case is unique, and it is not as simple as avoiding fructose – one must avoid sugar, fructose, gluten, dairy, peanuts, caffeine, vegetables, fruit, grains, carbs, it goes on and on. “Fructose-free is not enough, gluten-free is not enough, sugar-free is not enough”. Something must be done to help us. I don’t know why there isn’t more research being done to help with FM, but I never seem to find anything new that is actually useful to me. I find your aricle to be “spot-on” in describing what this condition is like and what you can actually consume, which is so little. Thank you for writing this and please continue to do so.
@Mandybohiken: While FM may not be directly life-threatening, I agree that it is severely lifestyle-threatening at a breadth and depth that is not readily comprehended by anyone who has not had to live with such restrictions. I wish you all the best in adjusting to the restrictions and exploring new, substitute channels of fun and joy!
Thank you so much for sharing. It’s a great relief to know there is someone out there like me. My body went into crisis mode about 6 months ago where all of a sudden my world was turned upside down. I started to experience hypoglycemia after eating, sever constipation, brain fog, weakness, fatigue, blurred vision and the list goes on. After seeing a series of doctors no one can really uncover what is going on or how to treat me. Similar to your experience I have had a series of test including MRI, CAT scans, sitz marker study, blood work and the list goes on. I have been diagnosed with celiac but many of the doctors I have seen question the diagnosis. After hours of my own research I have stumbled on the issue of fructose malabsorption. After careful experimentation and elimination, I have started to feel better. The main problem is, the only foods I am now able to tolerate are eggs, fish, poultry, meat, small amounts of white rice (although I have recently responded to this too), lactose free milk and coffee. I have a response to all other foods I’ve tried on the low fructose list including spinach, potato, rice cakes, celery and cauliflower. I have lost 20lbs. I am 5’2″ and weigh 88lbs severely underweight. I am not taking any supplements for fear of reactions to unsafe ingredients and have not found a nutritionist knowledgeable enough to help me. I would love to hear more about your wife’s progress along with any advice. Loved the piece of advice on refrigerated potato. I would like to hear more about the results on rapid emptying. It’s been over 6 months and I am growing more and more frustrated and defeated but reading your story made me feel less alone.
@my2girls: The experience of being undiagnosed, or having questionable diagnoses – despite seeing numerous specialists and having innumerable tests – seems to be common among many who suffer from digestive disorders. I’m glad to read you have found your own personal safe zone with respect to tolerated foods. Amy’s fructose malabsorption appears to have been temporary and likely secondary to other causes (perhaps SIBO?), and she can now safely eat several of the foods that were off limits during the darkest days of the elimination diet.
From my earlier research and reading, I suspect the temporary / limited nature of her fructose malabsorption is more the exception than the rule, but I also know that finding and resolving the core cause of digestive disorders often takes decades, and many sufferers reach a stage where a diagnosis and treatment (or response) – such as a severely limited diet – offers sufficient relief from symptoms that they suspend the search so that they can get on with their lives.
We still don’t know what is really going on in Amy’s gut. We go through periods where we resume the search for answers (or questions), but also have long periods where we try not to think too much about the whole thing, especially as there does seem to be a psychosomatic component (i.e., thinking about the problem itself sometimes precipitates an exacerbation of symptoms). At this moment, her weight appears to have stabilized around 115 lbs, and she has seen some small gains over the past few weeks. She still suffers periodic episodes of abdominal cramping of varying degrees of severity, as well as other symptoms, but they no longer appear to be as closely linked to what she is eating. She is developing greater capabilities of awareness, mindfulness and acceptance, and this appears to be helping smooth things out a bit.
We wish you all the best as you navigate your own digestive health odyssey. It seems that while there are many common symptoms and emotions, each person’s journey is different. We can relate to frustration and feelings of defeat, and we hope you will persevere as you continue the process of understanding and responding to both the common and special challenges you encounter!
Thanks for posting – your comprehensive roundup of fructose malabsorption information is excellent.
I’ll add a few things from our experience:
Turn your vegetable gardens into flower gardens!
As to lactose intolerance: Cabot aged cheddar cheese and Finlandia swiss are lactose free. Also check for whey in any product you eat. Whey used to get fed to pigs, who apparently didn’t mind lots of lactose; now whey is put in crackers and other commercial food products.
Our best to you and Amy.
Hi Joe, this has been amazing. Reading what your wife has been through is like reading about my own life. I did not have cancer but about 3 years ago started getting strong abdominal and flank pains, upset stomach, dry mouth and bladder issues. After various tests it was found that I had a large ovarian cyst and this was thought to be the cause of my problems. I had it removed and thought I would feel normal again. Imagine my dismay when my symptoms returned with a vengeance every couple of months for weeks at a time. I always had kidney and bladder problems as a child so I thought the persistent flank pain must be kidneys. I had 4 C.T.s many ultrasounds a bladder cystoscope and a colonoscopy both under general anaesthetic. I had every blood test and urine rest, I had stool tests. Amazingly all these showed nothing of concern except for one CT of the bowel which showed a “marked fecal loading”. Diagnosis that had been discussed included irritable bladder, IBS, Celiac, Sjogrens, Crohns, various others. After all this had been going on for ages and I had worried myself stupid thinking I must be dying of some horrific yet to be diagnosed disease and had broken down in tears many many times under the burden of the intense pain and discomfort I was experiencing I decided to take a different approach. I went to a naturopath who said she believes I have Candida overgrowth which is causing my symptoms. She then put me on a completely sugar free diet. No fruit, carbs, sugar, honey, no gluten,minimal dairy and only from goats. I felt like a new person. The horrible bloating went away. The pains subsided and lost 12 kilos in 3 months. I mainly lived on lean meat, eggs, green veggies and tomatoes. She also gave me various supplements to take. After 3 months I tried to add some forbidden foods back in and had a resurgence of all symptoms. So I did some more research ( trust me I have spent entire days studying my symptoms online over the last few years) and I came across fructose malabsorption. I now believe this is what I have. I know it’s very individual and I don’t react to every food that Is high FODMAP but I do react to many. I am going to get HB test done to confirm. In the meantime I am back to my restrictive diet but I have learned that many things I love to eat are ok. I don’t think I am lactose intolerant for instance and I think eating gluten free foods is ok too. I also react badly to certain sweeteners and to alcohol so I only have those things very rarely and I seem to be able to get away with it. I wish Amy all the best and I just want to say I understand how horrible it can be and I just hope she can discover some of her favourite foods can be added back to her diet. I will let you guys know what the results of the HBTs are. Sorry for the long post but it’s do great to find someone who knows what it’s like. Liz
@Nancy: thanks for sharing the additional resources.
@Elizabeth: thanks for sharing the story of your odyssey. Amy has also added several foods back to her diet. Our current hypothesis is that the fructose malabsorption may have been secondary to / triggered by some other disorder (e.g., SIBO), and that the subsequent reduced frequency and severity of reactions to formerly problematic foods may be due to the primary disorder having abated. In any case, it’s great that you’ve reached a stable state, and we wish you all the best as your journey continues!
I have read your article 3 times since being diagnosed with FM 5 months ago, every time learning something new. I was a world traveler and the type of person that would try anything and go anywhere. My personality was based totally off of my independence and ability to DO ANYTHING.
My fiancé finally made me go to a gastroenterologist after many nights of severe flatulence (25x and hour) and a general sour mood. They believe that the multiple severe stomach infections I had while spending time in South America may have triggered (or worsened) my FM. It has been a constant struggle dealing with the limited diet, social situations explaining why I can’t drink that beer, enjoy the barbeque, eat the pizza (also lactose intolerant). To be honest, many days I feel defeated and lose sleep.
Medical stuff I’ve tried:
-Tested negative for parasites and ova.
-I have tested positive for the hydrogen breath test (I ingested 50g of fructose one morning AT WORK – take my advice and do it on a weekend).
-Small-bowel follow through where the barium took 30 minutes to go through my entire small intestine. Doctor says this could be normal due to my age (27)
-Tested negative for SIBO with a glucose breath test.
-Currently I am attempting to convince a doctor that a fecal transplant may help the symptoms by balancing the bacteria in my gut. Currently this procedure is regulated by the FDA in the US and is only used for people with Candida infections.
****Fructosin supplements have helped me enjoy a somewhat normal lifestyle by enabling me to eat at the occasional restaurant without totally disabling my gut for 48 hours. Fructosin only works for fructose and not fructans (wheat, onion, garlic). It is extremely expensive but well worth the freedom it has provided me. ****
I sometimes feel selfish thinking of all the people with various cancers and far worse GI symptoms, but I WANT TO FIND A CURE.
@sam: thanks for sharing your experiences with FM and various treatments.
Reading your comment after listening to an NPR story this morning about a mother and daughter injured in the Boston Bombing facing a new future – and struggling to regain their former sense of independence – reminds me of just how devastating the early stages of adjustment can be. The relative invisibility of FM offers special social challenges, often requiring either explanations or deflections, as you note.
One of the other aspects highlighted in that story, that I think is relevant here, is the strength and hope the mother and daughter both derived from visits by a veteran U.S. Marine – and amputee – who demonstrated that it is possible to rebuild one’s life after devastation.
I hope others will similarly draw strength and hope from the stories you and others have shared here (and elsewhere) about perseverance, challenges and whatever palliative successes you encounter along the way.
Joe,
Looks like this post is kinda old, so I don’t know where Amy is on her journey, but I hope things are improving.
I just wanted to pass on something I came across recently. I lost the link, but do remember reading that FM can cause problems with serotonin levels, esp since it is found in the GI tract. While it is understandable to be depressed somewhat on just the fact of missing foods you like, or dealing with constant pain, bloating, and cramping, the article I read pointed to a drop in serotonin due to FM. Low levels have been found to contribute to depression. Sorry I can’t give you much more detail. I have just recently (<4 weeks) self-diagnosed myself with FM and am still in the learning stage.
Sounds like she has a lot going on with healing to begin with. Most sites say after 6 weeks or so of an elimination diet, you should be able to introduce foods in small quantities to see where your tolerance lies. Perhaps will the cancer and MS, her elimination time may need to be a little longer. Perhaps the cancer, and/or the treatments have affected her intestines to be extremely sensitive.
Regardless, I hope things are getting better for her, and continue. It’s hard to stay positive, but do hope that at least finally knowing what is causing the issue will give her some sense of peace and she can focus her energy to fighting back with knowledge, instead of being in fear from ignorance.
Best of luck to you both!
Thank you for sharing your story. I have been dealing with fructose/lactose intolerance for a number of years. I find for fructose that I can eat very small amounts occasionally of fruits “to be avoided” and be OK. This can bring back pleasure into eating ‘eg pick your strawberries, have one or two to taste – but not more).
Another thought: beware of medecines that contain lactose. I have found that a number of médecines or suppléments in tablet form with a hard coating actually contain lactose – and can cause a reaction.
@rob: Thanks for the information about possible linkage between FM and depression via serotonin, and sorry for the delay in responding (somehow, the comment notification email escaped my notice). There is a 2011 article on Fructose Intolerance and Depression at LiveStrong.com which references a 1998 study on the linkage between fructose malabsorption and depression. I wonder if that is what you are thinking of. In any case, I wish you all the best on your journey!
@Alison: thanks for sharing some of what you’ve learned. FM does seem to promote (and even require) a great deal of experimentation with – and attention to – what is ingested in any modality.
Joe – thanks for Sharing Amy’s story, stumbled upon your post via google.
I had some surgery a few years ago and after collected a few diagnosis including POTS/EDS 3, Mast cell activation syndrome and a few others. However had gi symptoms/gerd prior. treated with long term ppi. surgery made gut issues much worse.
fodmaps and sodium cromglycate helped me. i cant for the life of me work out how “trauma” causes damage to gut vili and blesses us with these onset intolerances. the gut is the 2nd brain as they say, g.i ptsd perhaps. in my case it did apparently progress to mcas, but perhaps this is where autoimmune problem genes come in to play.
Aaron
I am a physician who had fructose malabsorption for years. I tried to manage it medically and by pure luck wound up curing it. I believe that steps I took, will work for most people.
The details are on the website: http://www.frucmalcure.com
Hi Joe,
I relate very much with your wife’s symptoms. I too went through many doctors before one recommended a hydrogen breath test, which ended up showing that I malabsorbed fructose. My diet has been very restricted, particularly in light of how many foods contain high fructose corn syrup, including many breads and cereals. One thing that I now constantly have keep with my are glucose pills, the kind that drugstores carry for diabetics. As you described in this post, the symptoms are caused when foods have a fructose:glucose ratio greater than one. Therefore, the moment I have any symptoms of fructose malabsorption (headaches, bloating, etc), I immediately take glucose. It does help with the symptoms. In the first years, when I was experimenting with which foods were “safe”, I made many errors and this was a way for me to continue functioning in the days following ingestion of a “non-safe” food. This is something I discovered after years of searching for a way to manage the symptoms, and I wanted to share with you in the hopes that your wife could benefit from my experience.
@aaron: I’m glad you’ve found some relief through the avoidance of FODMAPs. I had not encountered a reference to sodium cromoglycate before, but have read about a wide variety of medications (often typically prescribed for other conditions) that seem to work for some people. Although we no longer believe Amy has (or had) fructose malabsorption, intermittent gastrointestinal trauma and PTSD are significant factors in her ongoing health challenges.
@Dennis: Thanks for sharing your experience with this multifarious and multifaceted disorder. I am glad to read that your symptoms have been eliminated. Given our own experience with a [self-proscribed] misdiagnosis of FM, and having read so many stories about others’ experiences with related symptoms and idiosyncratic salves and solutions, I find it difficult to interpret the generalizability of any claims of a cure.
@Liz: we similarly found it very useful to pay close attention to the fructose:glucose ratio of any and all foods when Amy was symptomatic. I’m glad you are able to successfully manage your symptoms through supplementing your diet with glucose pills.
Joe, I have a 6 year old with fructose malabsorption. We are still experimenting what she can/cannot tolerate in small quantities. The pain she encounters is still quite severe. Is there anything you know of that relieves the pain?
@Una: I am sad to learn that your 6 year old is experiencing severe pain. Although we no longer believe Amy has fructose malabsorption, she still occasionally experiences related symptoms, including episodes of severe abdominal cramping. Yoga, meditation and other mindfulness practices seem to help during some episodes. The most severe episodes still require analgesic opioids (Dilaudid, or hydromorphone hydrochloride) administered via IV in an emergency room. I am at a loss for what to suggest for a 6 year old, but I hope you and your daughter are able to find relief!
Thank you for sharing all this information. I have been struggling to figure out all of my digestive issues as well. I have recently started having the inside of my mouth swell after I eat…so now what? That’s a bummer about the strawberries. We now use green onions and red bell peppers instead of white onions and green bell peppers. I have gotten extremely picky. I ate a gluten-free fig cookie today and my mouth swelled. I am trying to find out if this could have been caused by fructose or sucrose. I use unsweetened coconut milk due to lactose intolerance and dairy intolerance. I am also beginning to be concerned about tomatoes. It gets to be too much. I have lost 65 pounds over the last two years. Thankfully, I still have plenty more to lose. Tell your wife she is not alone. Doctors are learning from Australia.
@Laura: figuring out digestive issues can be quite the odyssey. Thanks for sharing some of your experience here, and best wishes as you continue your journey.
Your comprehensive overview is great — I’ve discovered a lot of this myself but you put it all together so clearly. Thanks, Joe, and best to Amy.
I have FM and Lactose M and Oil/Fat malabsorption too (although with recent changes and help, the oil/fat is getting better). I’m sorry for what Amy has, and I pray that you may find moments to enjoy life despite all the struggles.
For me, I cried and everything, but it came down to moving past the fact of looking at food for pleasure, although I still try to find pleasure in it every day or other day or so, I work hard to not make it my focus, and instead think of it merely as survival so that i don’t feel deprived or sad, it helps often to be competitive in somthing else so that, that competition becomes your main goal, and food just a means to getting there..
I really hope your family gets better. Thanks for sharing.
@Natalie: thanks for your kind words. It does seem that the ability and willingness to consciously direct focus toward – or away from – certain things is a valuable asset on the journey. Best wishes on your own journey!
Just a consideration (that i have tested directly on my skin …); have you considered that the problem is only hypocloridria? In this case the low acidity of the stomach produce all the synthoms of sibo and FI ! This is generally the main problem and you can try to fix just adding to the food (at every meal) a tablet of Acerola (vitamin c natural), that you can buy in a natural supplement shop or pharmacy.
I am sure that many many problems will disappear almost “miracolosamente” !!.
Sorry for my english .
Ciao,
Michele
@Michele: Thanks for the recommendation of hypochlorhydria (aka achlorhydria) as a potential diagnosis and Acerola (aka malpighia emarginata) as a potential treatment that may be consistent with these symptoms.