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Gluten Free Products Are Making Me Sick


Mack the Knife

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Mack the Knife Explorer

I was diagnosed with Coeliac disease at the end of 2009. I have been on a strict gluten free diet ever since. I don't cheat and I am really careful about eating out and cc, etc. However, I have not gotten better on a gluten free diet. My symptoms persisted and when my gastroenterologist re-did the blood tests and biopsy they came back as still positive for Coeliac disease. He suspected I was still accidentally ingesting gluten from somewhere.

So I cut out everything and went back to unprocessed basics. Fruit, veg, meat, chicken, fish, nuts, seeds and lactose free dairy. And it worked! After two weeks or so, I felt better than I have felt for ages. My energy came back and my gastro-intestinal symptoms disappeared.

So I went to see a dietician and told her what I had been eating and the changes I had made. She thought I was probably getting sick from using contaminated gluten free flours (I love baking!) and she said I should be fine as long as I was more careful about where I sourced my gluten free stuff from.

So I ate some certified gluten free cereal and some certified gluten free buckwheat crispbread (made in a dedicated gluten free facility by a company that specialises in gluten free products). The next day all my symptoms came back and I have felt like crap for the last couple of days. So I have cut everything back out again and hopefully that will get me back to feeling better soon.

So am I so insanely sensitive to gluten that I can't tolerate certified gluten free food (that has to meet Australian food labelling requirements of testing under 5ppm)? Or am I intolerant to something in the gluten free food? I didn''t get sick instantly. There was a delay of about a day before it effected me.


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WheatChef Apprentice

If this occurs from a wide array of gluten-free products (ie: not just soy/corn/etc containing ones) then you might be experiencing carbohydrate intolerance. Would certainly account for the GI symptoms.

Mack the Knife Explorer

If this occurs from a wide array of gluten-free products (ie: not just soy/corn/etc containing ones) then you might be experiencing carbohydrate intolerance. Would certainly account for the GI symptoms.

You can be intolerant to carbohydrates???? Damn! I don't know if I could cope with that one.

I was eating potatoes and sweet potatoes when i was feeling good. Are grain carbs different from potato carbs?

In retrospect, I probably should have started by re-introducing just one thing - preferably with a single ingredient. The stuff I ate was regular gluten free products with several ingredients.

Skylark Collaborator

By "carbohydrate intolerance" do you mean FOADMAP foods? There are some people who have gut issues when they eat FODMAPs (Fermentable Oligo-, Di-, and Mono-saccharides, And Polyols). Some are fructose intolerant too, meaning they don't absorb fructose properly. And yes, potatoes are lower FODMAP than grains.

Open Original Shared Link

Could also be lectins. Where's Mushroom? She finds foods with lectins very problematic though the diet you arrived on sounds more like low-FODMAP.

Open Original Shared Link

Maybe take a look at the specific carbohydrate diet? A lot of people around here really like that one.

Open Original Shared Link

dilettantesteph Collaborator

I have the same issue. I buy my gluten free grains whole and sort them. I find the odd grain that looks like wheat. I remove it. Then I wash, dry and grind for baking. I can eat the grains that way. I seem to be sensitive to the allowed levels. I can't even eat the certified stuff, though I do better with the stuff from Australia as your limits are lower than ours (USA). I am glad that you have managed to figure out how to feel better. Even if you are unable to eat grains, it is better than being sick all the time.

GFinDC Veteran

...

So I ate some certified gluten free cereal and some certified gluten free buckwheat crispbread (made in a dedicated gluten free facility by a company that specialises in gluten free products). The next day all my symptoms came back and I have felt like crap for the last couple of days. So I have cut everything back out again and hopefully that will get me back to feeling better soon.

So am I so insanely sensitive to gluten that I can't tolerate certified gluten free food (that has to meet Australian food labelling requirements of testing under 5ppm)? Or am I intolerant to something in the gluten free food? I didn''t get sick instantly. There was a delay of about a day before it effected me.

So what are the ingredients in the cereal and the crisp bread? Can you add those ingredients in isolation to your diet and see if you react to them?

Marz Enthusiast

Be careful of the "home industry" gluten-free stuff.

I was ecstatic to see a whole range of gluten-free biscuits being sold at the local grocery store. A few days later started getting reactions :( I noticed when I was at the store, the range being sold by the manufacturer included biscuits with wheat ingredients as well as gluten-free stuff.

I'm assuming she made the gluten free items with the same baking utensils and oven as the wheat items, there was no type of warning like "being processed in the same lines...", but it was definately "home industry" type goods so bleh. Also, flour gets everywhere :(

Proof was when I made my own biscuits using identical ingredients, obviously in a gluten-free kitchen. No reaction at all! Safe to say I'm not trusting home industry anymore...

What is your reaction to plain grains - like rice, corn, maize/corn porridge?


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  • 4 weeks later...
Guest tamilynn38

I was diagnosed with Coeliac disease at the end of 2009. I have been on a strict gluten free diet ever since. I don't cheat and I am really careful about eating out and cc, etc. However, I have not gotten better on a gluten free diet. My symptoms persisted and when my gastroenterologist re-did the blood tests and biopsy they came back as still positive for Coeliac disease. He suspected I was still accidentally ingesting gluten from somewhere.

So I cut out everything and went back to unprocessed basics. Fruit, veg, meat, chicken, fish, nuts, seeds and lactose free dairy. And it worked! After two weeks or so, I felt better than I have felt for ages. My energy came back and my gastro-intestinal symptoms disappeared.

So I went to see a dietician and told her what I had been eating and the changes I had made. She thought I was probably getting sick from using contaminated gluten free flours (I love baking!) and she said I should be fine as long as I was more careful about where I sourced my gluten free stuff from.

So I ate some certified gluten free cereal and some certified gluten free buckwheat crispbread (made in a dedicated gluten free facility by a company that specialises in gluten free products). The next day all my symptoms came back and I have felt like crap for the last couple of days. So I have cut everything back out again and hopefully that will get me back to feeling better soon.

So am I so insanely sensitive to gluten that I can't tolerate certified gluten free food (that has to meet Australian food labelling requirements of testing under 5ppm)? Or am I intolerant to something in the gluten free food? I didn''t get sick instantly. There was a delay of about a day before it effected me.

You may have more than just celiacs disease- you also may have gluten intolerance or starch problems- you should be tested to see if you have problems with carbs-

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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
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    • 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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