Dairy allergy

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It's been some time since I last posted but have some significant news. Essentially all the symptoms I previously ascribed to Gilbert's have actually turned out to be due to dairy allergy (went to a hepatologist for the first time in years). Stopped all dairy intake - not easy, careful ingredients label scrutiny necessary - and have improved amazingly. I feel consistently normal again for the first time in years. Has apparently had pretty much the same effect as coeliac disease on me including mild pancreatitis and moderately abnormal liver function.

Thought I'd share this in case some form of food allergy is responsible for the symptoms of some other Gilbert's sufferers (my Gilbert's has been confirmed genetically by the way, with the promoter variant UGT1A1*28 and probably three other causative variants). Complete left field speculation without evidence, but there's always the chance that a gene for dairy or other allergy/intolerance might be close to the Gilbert's gene such that there is an association, which might explain why some people with Gilbert's get symptoms and others don't.

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  • Posted

    Gilberts appears to have numerous causes, often triggered by foods.

    My Gilberts, or the very high bilirubin levels, were caused by eating spicy foods.

    Stopped eating spicy foods and bilirubin level dropped from way over 100 back to 25, or almost normal.

    MORE RESEARCH is needed, but so many doctors think that Gilberts is a disease with no cure and anyway the effects are mild to insignificant.!!

    I can only suggest that people try lots of different diets and find one that works for them.

    PS A lactose intolerance, or dairy intolerance, is VERY common, and as we get older a lactose intolerance becomes ever more common.

    Dick

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  • Posted

    Thank you for taking the time to update. I too have been targeting food allergies after seeing evidence of others with celiac and gilberts. I will say that after removing gluten from my diet the IBS my doctor and myself related to gilberts historically has completely gone away. So what you put out here is a very intersting fact that needs paid attention. Diagnosis of gilberts or ANYTHING out there is most likely a very complicated equation of cause and effect that we all need to carefully work on. I wish "gilberts" was to blame for all the symptoms posted here but given all of our different makeup it only makes sense that there are many factors, and why doctors seem to be wrong so often. Its not a test tube where its an isolated Gilberts diagnosis. There are a multitude of underlying things going on in my opinion. That said, I am targeting gluten at the moment and seeing good results by eliminating it. Again, I appreciate your post. I will not stop at just gluten. I want me white eyes back smile
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  • Posted

    Thank you for the update! So often people come online and spew their symptoms and complications but rarely follow up when they do find something out, so thank you! I'm currently in the process of eliminating things that it could be, so this is helpful. i'll see if I can get a food allergy test.

    I too have been a little skeptical that it is simply Gilbert's causing all the problems. I feel like for those of us with the nagging symptoms, something in conjunction with Gilbert's is likely the cause.

    It's such a wierd place to be, it almost feels like those of us who have problems related to GS are forced to do a majority of research and trial and error with virtually no medical support. Maybe someday enough people will complain that we'll get taken seriously.

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  • Posted

    Thanks for the encouraging and interesting replies. A bit more background on my journey in this. I should mention that I'm a doctor myself, a surgical specialist in a field unrelated to Gilbert's, which helps a little in decoding some of the research and published stuff. It's depressing that as mentioned there's little in the way of definitive knowledge on the symptomatic/functional ramifications of Gilbert's, and disappointingly I've discovered much the same in my exploration of food intolerance/allergy. I suspect I might have been sceptical myself if I hadn't experienced the condition firsthand.

    A year ago my primary school age son developed an intermittent dramatic rash: 'hives', formally urticaria. Despite the medical advice that a search for a cause typically didn't reveal anything and that he would grow out of it, we experimented with a few different things (we'd just got rabbits, tried stopping chicken, pollen etc) and then I got some antibody testing done - IgE antibodies, which is the medically-legitimate one in allergy, versus the less evidenced IgG antibodies). The IgEs came up weakly positive for one or two things, but strongly positive for milk. We duly tried an impromptu skin patch test on his forearm with milk, which made his whole arm come up in a marked rash within a few minutes. So that was solved, and now we can control his symptoms, but dairy is almost ubiquitous so not easy.

    Next development. I'm adopted, and just a couple of months ago was contacted for the first time by my biological family. At one of our first chats, I was asked if I had any awareness of milk allergy, as my newly-discovered biological niece has an anaphylactic (severe allergic) reaction to milk. So it all fitted with regard to my son, but still no suspicion that my much more non-specific symptoms might be due to milk allergy.

    Anyway, my symptoms had been getting worse over the last couple of years, and in November I decided to investigate aggressively. Saw a hepatologist who mentioned food allergy but I was sceptical and went to see someone else who picked up that I had mild-moderate pancreatitis that may be the reason things had been worse. Had various scans, scopes and blood tests, which showed the raised bilirubin consistent with Gilbert's, mildly raised transaminase liver enzymes (not normal for Gilbert's, but I've had these for many years) and mildly raised amylase (pancreas) that I haven't checked before. No cause was evident, and we looked for virtually every possibility. Might mention also that I've also had intermittent mild 'eosinophilia' for 25 years, which typically signifies either allergies or parasitic infection - I and other medics stupidly dismissed it.

    The epiphany came when two weeks ago after a family meal out I awoke feeling more lousy than usual, and for the first time found a small patch of the urticarial rash that my son gets. Stopped dairy immediately (instead of my usual healthy bowl of cereal and milk) and the effect was profound.

    More research with my biological family revealed that about a third of them have the same systemic Gilbert's-type symptoms so common on this forum, but all have identified dairy as the cause and avoid it. So all ties in nicely.

    The only definitive way to diagnose a food allergy or intolerance is by trial and error, and pinning down a specific food is not easy unless you have a prior clue as I did. However, common things are common so if anyone wanted to experiment I'd suggest starting with the most common and working down the list, giving a strict few days to each until benefit is appreciated. Testing for coeliac disease may be worthwhile - the blood tests are straightforward.

    There's a lot of confusion by the way around the difference between food allergy, IgE-related and non-IgE-related forms of food allergy, food intolerance, lactose and wheat intolerance. Not just with regard to the terminology, but in determining which form of food sensitivity an individual has. I suspect that given my age (middle-aged) and the general nature of my symptoms (fatigue, malaise, headaches, night sweats, arthralgia, bloating etc) I would have been given a label of intolerance rather than allergy if it were not for the family history. I checked my own IgEs, by the way, which showed only weak positivity to milk but negative for most things - a weak result like this would almost certainly have been disregarded by medics as that's the conventional wisdom.

    Good luck guys!

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  • Posted

    A further update in passing. Checked my bilirubin level last week after a couple of weeks dairy-free - it was normal at 19 for the first time ever. As a doctor, I've been able to check LFTs whenever I felt like it, and the usual level has been high 20's to high 30's. Basically it's at the upper end of the normal range now, bearing in mind that genetically I definitely have Gilbert's.

    Still feeling normal - which for this community translates as fantastic - though I did have a bit of a relapse (still better than before) after a few days and investigating further found I was also allergic to soy, as is a half-sister. A pity, because a lot of dairy avoidance strategies involve soy. Hopefully that's it for the allergies

    Bothering to keep raising this because, as I mentioned above, based on my experience there's a good chance that at least some other Gilbert's sufferers have food allergy as well, and it's tempting to speculate that in some cases the reason for the occurrence of symptoms only in some of us (and some cases of ME/CFS) is undiagnosed food allergy.

    The diagnosis is not easy though, partly because unless you get dramatic symptoms like a rash (e.g. my son) and/or have a family history, medics are likely to be sceptical. A blood test that was positive for me, providing objective evidence of the type of problem, was 'eosinophil cationic protein'; this is raised in allergic and parasitic problems only, so narrows the field, and scans and other tests were negative for parasites. Not sure I would have come up with the diagnosis if I hadn't had the flexibility and access to investigations my profession affords me. It's important to note also that IgE antibody testing can be negative. Although this categorises a patient then as almost certainly 'non-IgE' allergic or 'food intolerant', I know from my son's case that IgE's can be normal on one occasion but raised on another - again, useful for me to be able to get blood tests for him when I wanted.

    Biometric

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