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Hi, I'm New To All This And Just Wondering....


IrishLisa

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IrishLisa Newbie

Hi all,

I've been reading the messages on the forum for a few weeks now & have to say that I find the information on here so helpful.

Just to give you a brief run down (or at least as brief as I possibly can!):- I've been casein intolerant since birth & problems with some soya based formulas too from what my mom remembers. For as long as I can remember I have had GI problems, with C (some D), cramps & bloating being the main complaints. In childhood, I also had C, chronic asthma and ezcema. For as long as I can remember I have had a recurrent yeast infection, which is very annoying :angry:, my hair falls out, I get unexplained bruises, and my cuts/scratches heal soooo slowly, mouth ulcers and really cold hands and feet, night sweats etc

For most of my adult life I have stayed away from things like bread, pasta etc. The main reason being that it they have always made me feel sluggish, bloated, given me C and made me feel as though I'm gaining weight. Also, they also make me feel very full and don't seem to be hungry for a few days afterwards. So, I guess without realising it I just unconsciously stopped eating these things. During the past year I started eating pizza, some wholemeal bread etc in an effort to add more fiber to my diet and have had all of the GI symptoms that I described above. C & bloating being the absolute worst. My mom also has many of the same complaints (inc. casein intolerance), but reluctant to do anything about it. I decided to do some investigation and think that many of my symptoms may point towards celiac disease.

Although, many of your posts suggested continuing to eat gluten and get an official dx, I fell into the trap of going gluten-free for a few weeks..just to see what happens. Have been gluten-free for almost 6 weeks now with unbelievable results. I have more energy, feel refreshed in the morning, no more talking in my sleep (so my boyfriend tells me) and no more night sweats and vivid dreams. Also BMs seem to be normal again, which is a relief. Unfortunately, I ate food containing gluten yesterday and am suffering for it now. So bloated that my bf said that I could pass for being pregnant!! Oh yeah & C again....

I live in Spain and the whole celiac thing is really foreign to them. Even doctors & chemists aren't at all helpful. The only silver lining is that it is relatively easy to get gluten-free products because many of health food stores stock them and eating as I love seafood and salads, eating out is relatively easy too.

Guess what I'm asking really is do I need to return to eating gluten and get an official dx? Or is my positive response to a gluten-free diet my dx?

Finally, just wondering if anyone else has been known to talk in their sleep, which stopped when gluten-free? Just think that it seems bizarre that I used to talk so frequently in my sleep and always have done and now not a murmur. My bf is a really light sleeper, so he always wakes up if I start talking.

Thanks in advance for any replies

Lisa


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StrongerToday Enthusiast

It's your body! If you feel you have to have an official diagnosis, then you probably should return to eating gluten and get the tests done. But, even if you do that - you may or may not get an official diagnosis. I got my bloodwork done before going gluten-free and it came up "normal", but my dr. encouraged me to try going gluten-free and diary free for six weeks to see if I was feeling better. When I returned six weeks later and told him I was doing much better, he said to listen to my body and not worry about an "official" piece of paper.

kabowman Explorer

I went gluten-free before talking to a doc, felt so much better by the time I did talk to the docs, I refused to go back on a gluten diet for a positive dx.

I wasn't sure I liked it at first, now I don't care. I feel better and that is the important thing.

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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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