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My First Post- About My Son


Sharon C.

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ryebaby0 Enthusiast

My son always loved oyster crackers -- lived on them. The first months out of the hospital, I couldn't even be in the same aisle in the grocery store as those crackers. When I eventually did, I cried like a lunatic, right there in the store. And it felt good.

The school is legally obligated to accomodate your son. You will find, however, that is simply easier to send his food. But you aren't ready to be dealing with all this right now. I know it is so overwhelming, and depressing to think of all the stuff he's missing. To feel like you are going to "poison" him by accident, or someone else might. But believe me, you are blessed that he isn't suffering from an incurable, untreatable, degenerative illness, or one that requires dangerous medicine or therapy. I kept telling myself that over and over.

There are still lots of things he CAN eat. And what he eats is only a very small part of who he is. We try to tell our son "well, this sucks, but it's what we got, so we aren't going to let it ruin our lives". I learned to make gluten-free pizza. I learned to think creatively. I learned to never apologize for not letting him eat things, and I learned that we can do whatever we want as long as we figure out a new way to do it. (I do so miss spontaneous trips!) I learned to order MCd burgers without the bun (why do they call it a muffin?)!!! YOU WILL GET THERE!

Hang in there, you are doing fine so far. When you are ready, try Miss Roben's ---a multiple-allergy vendor on the web at www.missrobens.com . Some of our new favorite foods come from there.

Joanna

mom to a son with: celiac, egg allergy, and autoimmune enteropathy: rare disease where his body tries to reject his small intestine. Lost 25 pounds in 4 months; weighed 48 pounds at 10 yrs/hospital admission for 7 weeks, recovery for 4 months --- weighs 72 pounds and DOING GREAT!


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jsib Newbie

The gluten free pantry has a pretty good pizza crust I bought a seperate crust cutter for it. I use it as bread. Tastes pretty good crunchy from the oven.

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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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