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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Amyleigh0007

Twizzlers Did Me In...

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I gave in. I ate Twizzlers. I shoved them down my throat when my son was outside. I inhaled them when he went downstairs. I ate more while he was in the bathtub. I knew I shouldn't have bought Halloween candy this early.... Anyway, I am not sick. I had mild nausea (anyone would who just ate their weight in Twizzlers) but that's it. No D, no headache, no extreme fatigue. Why? Part of me is thrilled with the thought that I might be able to cheat now and then. The other part of me is pissed. Why am I avoiding all this food when I don't even get sick anymore? Did my body heal and now gluten doesn't affect me like it used to? What is going on??

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Hummm...well, you know that everyone is different.

Your reaction time could be extended. You might not know what tomorrow will bring.

(twizzlers were very hard for me to digest, when I did eat them. A bady tummy is understandable.)

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According to your signature, you were never diagnosed with Celiac.

So, if you look at it from the approach that you don't have Celiac, you don't know why you were having reactions to gluten. Whatever it was may have cleared up. You may have a 'threshold' of gluten intake that you can tolerate. Or...<insert other reasons here>

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Thanks for your replies. It's interesting to get others opinions. I might be counting my chickens before they hatch. I should give it a bit longer before I celebrate with more Twizzlers. My Celiac testing was messed up so my results were not accurate. I actually don't really know if I have Celiac. I do not wish to gorge myself with gluten for 3 months in order to get an accurate test. But, I do know I have a problem with gluten. Going off gluten has made a huge difference in my health. So, I will wait and see.....

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I'm in the same boat as you. I often don't feel sick when I get glutened, but if I gluten myself several days in a row I start to get sick. Maybe you should eat twizzlers once a day for the next week and see what happens :) I'm thinking I either have a much higher gluten tolerance level than others and my immune system can handle it now that it's healed or I am getting damage but it just takes a few days for reaction to make it to my joints and muscles to make them hurt.

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I'm in the same boat as you. I often don't feel sick when I get glutened, but if I gluten myself several days in a row I start to get sick. Maybe you should eat twizzlers once a day for the next week and see what happens :) I'm thinking I either have a much higher gluten tolerance level than others and my immune system can handle it now that it's healed or I am getting damage but it just takes a few days for reaction to make it to my joints and muscles to make them hurt.

I tend to be the same way. Last year I'd cave once and a while and eat "real" pizza with my friends with no issue. But if I ate gluten every day for several days (like I did whenever I left the country or because of CC issues in the sorority house) I was always sick, had D, throwing up, super fatigued, depressed, and anxious.

All the same, it's been so long now since I have cheated that I'm wary of experimenting anymore. Plus even just once I tend to get anxious and tired.

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I think there are degrees of damage from gluten intolerance (including but not limited to official celiac). Those who have not suffered years and years of the truly debilitating symptoms don't seem to get as severe a reaction once they have healed.

As long as the only culprit is gluten (i.e., we're not talking about other food intolerances, Lyme, or any other causes), I don't believe it matters whether or not your official diagnosis is celiac or gluten intolerance; nor does it matter how mild your reactions are--the unseen damage can be just as severe, whether or not you have villi damage. If you cheat, you could be triggering lupus, RA, diabetes, Hashimoto's, or even cancer.

Since DH sufferers have an automatic diagnosis of celiac even though they may present with no intestinal symptoms or villi damage whatsoever, it's not even a baby step to understand that celiac can present in ways other than damaged villi. So that, I believe, takes the validity out of the whole biopsy diagnosis as"gold standard" idea currently in use.

As for genetics, there are people on this board who have biopsy-diagnosed celiac who do NOT have the supposed "celiac genes." So either they've been misdiagnosed, or the idea that celiac is limited to those with "the genes" is plain wrong, but either way, something is not Kosher with the diagnostic process.

The current thoughts on the "celiac genes" are based on studies of genes from those who were diagnosed by biopsies. I can't find any studies showing the genetics of those who do have celiac symptoms but either a negative biopsy or no biopsy. If people have can have celiac with no villi damage (like Dh sufferers mentioned above), why are they still drawing the conclusion that you have to have villi damage to have celiac?

And that doesn't even consider the number of biopsies that either miss a damaged patch of villi, or the doctors who misread it.

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Welcome to the site Steve! =)

hehe I would love to eat a real piece of cheesecake.....mmmmm. lol I always say that. I wont do it though, no gluten is worth it. If the doctor asked me to eat gluten for 3 months, I would be so sick. Last time it was only 3 months before I was dx'd and I dropped so much weight, not doing that again lol.

Good luck to you =)

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You all had some great insight. I do feel sort of yuck today (headache, yawning all day, muscle pain) but it's not nearly as bad as it used to be (D for hours, extreme fatigue). I would never give up on the gluten free diet just because I ate a few Twizzlers with little ill effects. I am a strong believer of the gluten free diet and eating a few pieces of candy that contain wheat flour won't change that. Today it was back to 110% gluten free. We are all human and prone to giving in at times (especially during this time of year when treats are going to be everywhere you turn). I am glad I have a group of people like you all to vent to, people who understand and may be going through the same things I am. Thanks!!

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You all had some great insight. I do feel sort of yuck today (headache, yawning all day, muscle pain) but it's not nearly as bad as it used to be (D for hours, extreme fatigue). I would never give up on the gluten free diet just because I ate a few Twizzlers with little ill effects. I am a strong believer of the gluten free diet and eating a few pieces of candy that contain wheat flour won't change that. Today it was back to 110% gluten free. We are all human and prone to giving in at times (especially during this time of year when treats are going to be everywhere you turn). I am glad I have a group of people like you all to vent to, people who understand and may be going through the same things I am. Thanks!!

Well, I hope you enjoyed them ;) Don't feel too bad. I don't condone an occasional temptation, but it's just hard to be perfect. :P

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Twizzlers- Ahhh! I got glutened by them over the summer accidentally and it took me 3 days to react. Mostly, uhm, unpleasant bathroom experiences. Hope it doesn't get you too bad!

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I know this is old but I wanted to update it. I was concerned because I did not get ill right after eating Twizzlers. Well, it's been about 5 days now and I've been sick for the past 4. I guess it was a late reaction. I haven't had D and stomach pains like in the past. It feels more like a hangover. I am still not feeling better. My belly bloat is back and my pants do not fit me! That symptom alone will make me not give in to my temptations again! I have learned my lesson!

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Good point someone made about the internal damage.  Physical reaction or not, the worry is what is happening that u can't see. 

Newly diognosed in March, with celiac and Crohn's, so I'm still new at all of this... someone made reference in a post to Dh. What is that? 

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6 hours ago, Jdentice1 said:

Good point someone made about the internal damage.  Physical reaction or not, the worry is what is happening that u can't see. 

Newly diognosed in March, with celiac and Crohn's, so I'm still new at all of this... someone made reference in a post to Dh. What is that? 

Welcome to the forum!

An itchy, blistering, burning skin rashdermatitis herpetiformis (DH) is a difficult condition to live with (better known by our members as the "rash from hell".  The rash and itching can occur on the elbows, knees, scalp, back, and buttocks. This rash is triggered by gluten, which is a more serious underlying condition that's also known as celiac disease.

 

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