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Newbie - Well Sort Of..


Roadki11

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Roadki11 Newbie

Hi everyone,

It looks like I might have coeliac disease after all.

Huh?

Well between 18 months and 14 years of age I lived Gluten-free as an atypical coeliac sufferer (On the heavy side rather than underweight and no symptoms since I was a baby) I was then biopsied after weeks and weeks of bread (capsule attached to suction type) and was told (as far as I can remember!)"Oh, no trace of celiac disease after all, go eat what you like." :blink: So I did. Never got a liking for brown bread or pasta, I would quite happily live on rice. White bread was fairly cloying, but I put up with it for the convenience of sandwiches.

Roll on a quarter of a century (during which I start smoking and stop smoking):

I've started getting lower gut pain, and what appears to be IBS, have a patch of "exzema" on one hand that just doesn't shift, permanent tiredness/listlessness. So I went to the doctors. According to my records celiac disease is an ongoing problem of mine. Nice of them to tell me! :angry:

Anyway I've had the bloods drawn for a bank of tests and provided the "other" sample.

So just a matter of waiting now.

Has anyone else got experience of falling off the gluten free wagon for years before going back on?

And how do I cope without my favourite Real Ales??? :(


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    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
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    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
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