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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.

Oh, It's Just The New Thing!
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9 posts in this topic

This is what EVERYONE aside from my sis in law who has celiac disease has said to me. Everyone from my husband, coworkers, my boss (I waitress), friends, family, etc. EVERYONE!

Oh, Gluten is the new bad guy, Dr's tell people it's gluten only because they dont know what it REALLY is. How can wheat cause this. Its just the new thing, its all in your head. The Dr is making you think its Gluten but its not.

And more...

Of course, most times I ignore it..but there are sometime I wonder if I am "going along" with it and believing in the new thing...

The non-support is actually more frustrating than having to eat gluten-free.

Also, everyone tells me its a way for companies to make money off me buying the "expensive food" Actually, all I have bought gluten-free so far are donuts...otherwise, I stocked my house full of just naturally gluten-free foods..

My sis in law who is Celiac has even said that only about 2%of her weekly shopping is on gluten-free foods..everything else she buys is just normal, naturally gluten-free food...

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Just give them a small history lesson in celiac. It was discovered ages ago. There's nothing new or "thingie" about it. It's just what it is. If people care less about educating themselves by actually reading rather than just watching silly shows, why should we bugger ourselves over it ;-)

My whole family except for my mom and hubs don't believe me, and I'm still in the process of making myself care less about what they thing.

We need to relax, care less about their "oh so insightful opinions" that come from daily shows, and enjoy our journeys to good health being gluten-free :-)

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Here's some history. It is believed to be the "wasting away" disease described in the Bible.

The cure was discovered through the starving children of Belgum during the war. Children who had been diagnosed as failure to thrive, became "healthier" when they were STARVING. This lead to the conection ~it was food related. They usually just left the person on a banana diet.

You have to remember there was no "routine" endoscopy in the past. The furthest information gastroenterology had was from Dr. Beaumont. Dr. Beaumont had a patient that was accidentally shot in the stomach. The wound never healed properly and left in layman's terms a "window" into his gut. So Beaumont got to watch human digestion through this window and was termed "the father of gastro physiology"

If this "fad" term is happening because more people are asking to be tested. At least people are hearing about Celiac and DH begging to be tested. Because it matches symptoms that they have had for (what 40 some years depending on their age)?

One out of every 300 people are estimated to have Celiac/ DH. The number is probably higher, because doctors really haven't tested. (It was a blind study of blood supply~ only blood donations were sampled) I always get turned down for being underweight, anemic, and so on. So how are the true bunch of undiagnosed Celiacs going to donate blood? ;)

Sorry went on a Cliff Claven rant. :ph34r: :ph34r:

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As more and more people hear about it, even if it is through the hype from the famous people who are going gluten-free without needing to, more and more people might put two and two together. If people who actually HAVE Celiac discover it and start eating gluten-free and thereby prevent all of the terrible things that can happen to a Celiac who continues to eat wheat, it is worth it. We who truly have the disease may suffer from the taunts and pooh-poohs of others, but our suffering is nothing compared to the cancer, neurological problems, thydroid problems and the like that an undiagnosed Celiac faces.

Just last night I was talking to a lady I know about it. After hearing the non-digestive symptoms that I have, she now believes her daughter may have it. She has thydroid problems, rashes, and balance problems. I half expect her to show up here in the next day or two. I hope she gets tested, or at least tries gluten-free to see if it helps. I made it a point to direct her to this site so she can learn HOW to go gluten-free - reading labels, CC issues, all the pitfalls that await us in the grocery stores.

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Yeah, I get a lot of this too. More people are eating gluten free even though they don't have Celiac or an intolerance. I'm not saying it's not healthier to eat gluten free, I just think you're crazy to do it if you don't have to!

I inherited Celiac from both sides of my family. My aunt developed thyroid cancer partially due to undiagnosed celiac. It's definitely not in your head. Also, if eating gluten free makes you feel better, then you should eat gluten-free regardless of any diagnosis.

Just tell your friends/family (as I often do) that the gluten-free diet keeps you a healthier, happier person and they don't want to be around to face the consequences if you get glutened.

Education and awareness helps (how many times have we explained our condition to someone..?), and reminding them that it's a DISEASE, not a fad, and that you wouldn't be doing it if you didn't have to.

Also, if more people eating gluten-free means better/more affordable gluten-free products for the rest of us, all the better.

(though don't get me on a rant about exploiting the celiac. When you're stuck at a restaurant where the only option is a tiny salad, or $5 extra for pizza, what do you think...)

Peg

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I was scared it was going to be a passing phase..finding gluten free food in the store. But, my SIL's nephew has autism and has been told to go gluten free. Considering how high the autism rate is, it wouldn't suprise me if they find out it is caused by what we are doing to our food in America! When everything (practically) gets better when gluten free, I think the awareness will just grow...and hopefully the menu! I have friends who do gluten free for their daughter's ticks. Within 3 days they were gone. I am for finding a cure and the University of Chicago says by 2026, they will have one for celiac. However, I wish more studies would be done on how our wheat crop is different than it used to be and maybe stop these other problems as well.

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Today's food makes me so.scared and I dont.know.if.its that medical.science is more advanced and thats why they can diagnose more problems, or that our nutrition.is so poor that more problems are arising. Scary times.

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I have friends who do gluten free for their daughter's ticks. Within 3 days they were gone.

By this I assume you mean nervous tics, not biting ticks?

Just checking....

:ph34r: :ph34r:

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of course people who have not suffered stomach cramps or chronic diarrhea would think that you are just on a 'fad diet' or something. tell them, in graphic details, about your symptoms!

If you feel better gluten free that is all that really matters!

I want to add that, although some gluten free items are expensive, you can find a lot of gluten free foods that are not any more expensive than any other food items.

I eat a lot less now that I am gluten free, so that $3.50 bag of rice noodles is about 8 meals, and maybe 10 meals, depending on what I have with the rice noodles.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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