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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Cd Vs. Gluten Intolerance
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7 posts in this topic

All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

I didn't have any gluten problems until early this year when I had some skin/scalp problems show up. Going gluten-free has resolved everything for me so I took my daughters in for testing and put them on the gluten-free diet. which resolved all the gas pain/indigestion my oldest daughter had.

From what I've read on this forum and elsewhere, once a celiac, always a celiac, and you need to be gluten-free for the rest of your life. However, if you don't test positive for celiac, might you be able to tolerate gluten at some point in your life?

Thanks so much for any input.

Laura

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I'm not an expert, but, from what I understand at this point is gluten intolerance is for life too... it also is an autoimmune disorder, it just hasn't caused damage to the intestines.

Someone please correct me if I'm wrong - I'm basing this on what the "nutritional specialist" told me as in her opinion my son falls in this category (GI vs. celiac disease).

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All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

First, going gluten free would alter test results so were you gluten free at the time of testing and well before?

Second, the IgG testing is not enough to rule out celiac. You have to get a complete panel done. The fact is that the IgG is the least accurate of the tests.

Third, even with gluten intolerance you need to be gluten free for life...there has been debate about whether gluten intolerance can turn into celiac if the diet is not followed. I think it is definitely possible.

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All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

I didn't have any gluten problems until early this year when I had some skin/scalp problems show up. Going gluten-free has resolved everything for me so I took my daughters in for testing and put them on the gluten-free diet. which resolved all the gas pain/indigestion my oldest daughter had.

From what I've read on this forum and elsewhere, once a celiac, always a celiac, and you need to be gluten-free for the rest of your life. However, if you don't test positive for celiac, might you be able to tolerate gluten at some point in your life?

Thanks so much for any input.

Laura

<{POST_SNAPBACK}>

I am also gluten intolerant. My GI doc ( who started me on a gluten-free diet ) is now insisting that I can eat gluten (and dairy) because my gene test was negative,

I had no damage to the villi, and my antibody came down. Every time I tried either of these food groups I get sick. I think that he thinks that it is all in my head!

One of the worst things that happen is a migraine headache and they terrify me. There is no way that I am going off the gluten-free diet, not for him, not for anyone. I don't know how to advise you except try it after a while and see how you feel. I think that after being gluten-free you will probably be more sensitive than before.

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I wonder if some of the confusion about out growing is realted to WHEAT ALERGY which you can out grow, or pick up later in life... but thats not an autimune disorder....

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I have a non-celiac disease gluten sensitivity, too. Based on the research I've done, this is genetic just like celiac disease, and it has some equally dire diseases related to it even though the intestine may not be among them. Being a genetic disease, we're stuck with our genes for life so while some symtoms may change and appear to allow you to eat gluten, that doesn't mean it's wise.

You may want to have a DNA test done to see where your genes may lead you. I had mine done at Enterolab (gene test alone - $150) since they test for a few more genetic variations besides the two for celiac disease (HLA-DQ2,8). Once you get your results, you can Google them if you want to see what diseases pop up from the search - if you have any of the non-celiac disease gluten sensitivity genes, you will find the results very sobering. I'm of the opinion so far that non-celiac disease gs is equally as dangerous as regular celiac disease; it just affects different parts of the body, particularly neuro related things. I also recommend reading "Dangerous Grains" by Braly for its coverage of non-celiac disease gs.

Bottom line is if your body feels better being gluten-free (my case and sounds like yours, too), it's probably trying it's best to tell you something. Probably worth a listen.

George

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Thanks so much for all of the responses.

Yes, we were on gluten when the tests were done -- I did take my daughters off after the blood was drawn, assuming that gluten was going to be a problem and I didn't want to wait for the results to come back. In addition to the ELISA test, we had the tTG, which was negative.

My intuition is that this is going to be a lifelong diet for us because they have had their symptoms all of their short lives (while my own had started in mid-life). They also have food reactions to dairy, beef, sugars, eggs, so their diet has become quite restrictive. "Lifelong" when you're 10, though, is more overwhelming than when you are in your 40s! But they hear random stories from people who had wheat allergies as children and outgrew them, so I thought I would ask.

I did tell them that we need to think of it as "today we will not have any gluten" and the future will resolve itself. We are finding some fun things to eat so it makes it easier.

Thanks again,

Laura

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    • Newbie: mother to coeliac kids
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    • Weird Reaction
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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
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