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Still Struggling ..


Karwei5

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Karwei5 Apprentice

I am still having issues with my son.

He was diagnosed in January by biopsy.

His main symptom was throwing up everyday and multiple times along with pain and grumbling.

He got the sickest after eating chocolate at Halloween. At that time he could not eat any chocolate w/o throwing up and a lot of pain.

We started him on the gluten free diet.

I did not change soaps/shampoos though.

He showed improvement.Throwing up slowed down. He recovered a lot faster and not everyday.

Late Feb. March he had a few weeks w/o throwing up.

He snuck pretzels about 1.5-2 months ago and I am having a hard time getting him better again.

Is the chocolate getting him sick a strong indicator of some other sensitivities to other foods?

WE also were doing a lot of remodeling in our house could there be dust that is making him sick?

I have allowed him to have food with natural flavoring.

I think that is all I have slacked on.

I told my girls they can not cook anything with flour in it for awhile to see if we are having any cc issues.

I have orders to retest his ttg and am going to take him in this week to see if his antibodies are still up.

I am not sure how to figure out if other foods are giving him problems.

I feel bad he is still having problems. He has missed most of his summer school because of it.

Karol mom to Billy


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emorgan816 Newbie

I'm sorry to hear he is not feeling better. Did you also cut out dairy and sugar? I would find an allergist and take him there. I went to one and discovered I'm allergic to many things and once I eliminated them I am starting to feel much better. Dairy and sugar are the two major ones I eliminated - but from what I understand dairy intolerance goes along with Celiac (I was diagnosed end of March and still learning about this diesease)

I do cheat on the no-sugar (I have a huge sweet tooth!) When I eat sugar I get bloated and have abdomin pain - no throwing up. When I have the dairy tho I sometimes get sick from that.

I hope you can narrow it down - you may have to gradually add/subtract things from his diet to really get a handle on what is making him ill. But I would find a good allergist for him. As you mentioned, it could be environmental (since you are remodeling).

Good luck!

Elizabeth

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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
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    • 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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