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Soy & Dairy Questions


Sooz

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Sooz Newbie

I've posted a couple of times before. Briefly, symptoms started in November. Went gluten-free a week later and wasn't prepared to eat gluten until I could have an endoscopy, which in Australia, in the public system, can take up to 2 years.

 

My problems were alleviated with a gluten-free diet, but I also discovered I can't eat any dairy, not even hard cheese, or yoghurt that seemed so soothing in the beginning of gluten-free.

 

I finally got the genetic testing and of the three results, all were positive. I also have Type 1 diabetes, so celiac often goes hand-in-hand. Pretty much a no brainer about what I have, but no 'official' diagnosis. I may pursue it in the future, if I want to damage my gut again, just for a diagnosis. Both my family doctor and my endocrinologist say it's obvious what it is and to stay gluten free.

 

Now I'm wondering about soy. Seems I can tolerate some soy... but maybe not. I'm aware that soy and corn can be a problem. 

 

It seems I can't eat my usual mayo that is made with soya bean oil. I'm not exactly sure if it's the eggs or the oil. I can eat eggs where the yellow isn't very cooked, but not hard-boiled eggs. In the mayo, surely the eggs are raw? I use S&W Mayo made in the USA. Does anyone know if there's some kind of cooking process to make this mayo? 

 

I mostly have mayo with canned tuna (packed in springwater). Surely it couldn't be the tuna, could it?

 

I can eat a couple of soy-based crackers ok, but I've wondered when I've eaten more, if they were responsible for ensuing gastro problems.

 

Yesterday afternoon, I tried a soy latte (I'm missing my decaf lattes). I was ok all yesterday (and almost jumped for joy because it was tolerable to drink), but 24 hours later, I'm having gastro symptoms. I know these will last 24-48 hours, so I'm stuck with it.

 

I'd gone 16 days straight (without being glutened or dairy'd) feeling fantastic with zero gastro issues! I'm only a couple of months into this, so I'm still coming across stuff I could happily eat before, but not now.  

 

My question is... does anyone know the difference in soy content between a couple of crackers, soya bean oil and about 3/4 glass of soy milk? What's in soy that causes the problem?

 

Not that I really want to eat soy, but the occasional soy latte would be nice, but not if I can't tolerate it. 

 

With the non-gluten "intolerances", do they do the same kind of gut damage that gluten does? If not, what kind of damage do they do, if any? 

 

Last question... why does a dairy intolerance rear its head when you first go gluten-free, when dairy was never a problem before? I'd have dairy every day before, but definitely not gluten every day. 

 

Sorry about all the questions in one post. I've been saving them up! 


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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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