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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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steve-o

My Blood Panel Results Are In...

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Well, I finally saw my doctor today to get the results of my blood panel. I'm sure lots of other people have similar confusing results, so I wanted to share my experience and insight:

I had an IGA Anti-Gliadin antibody reading of 53 (over 25 is high), but my TTG was only 3, which is a low/negative number.

My biopsy was also negative, BUT....he only took one tissue sample, so I don't have a lot of faith in the scientific value of this result, given that damage to the villi can be patchy, and all the literature I've read says that you must take multiple tissue samples to avoid sampling error.

The doctor said this means I don't have celiac disease. He said although the Anti-Gliadin AB is high, this doesn't necessarily mean I have celiac. (I didn't think to ask him at the time...but I'm kind of curious, why do they bother doing this test if the results don't mean anything?)

I asked if this means I have a gluten intolerance, that hasn't gotten so bad that it's damaged the villi yet. His reponse was that you either have it, or you don't....there's no degrees of gluten intolerance.

But then he said my symptoms before going gluten free were classic celiac...and the improvements I've seen since being gluten free for the past month, are exactly what he would expect to see from somebody who was recovering/recently started the gluten-free diet. He said there are "subclinical" cases of celiac, and that I may be one of those cases. His recommendation was to stay gluten free for a few more weeks, and then slowly try reintroducing gluten into my diet. If I have reactions to it again, I can probably take this as "evidence" that I need to avoid gluten.

I guess the point (which most of you already know all too well) is that in the end, you need to just listen to your body. Blood tests and biopsies aren't perfect, and if your body is telling you that it doesn't play well with gluten...you should always listen to what your body tells you, regardless of what the tests/doctors say.

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When my doctor diagnosed me, it was only with the blood tests. My levels came back indicating celiac, I never had a biopsy. I responded really well to the gluten-free diet and I just went with that, as you said...your body knows best!!

Good luck!

Laurie

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My experience with celiac disease and going to the Doctor is that I have come to learn what an un-exact science medicine is. I always thought with all the technology etc. that medicine was more specific in its diagnosis and treatments....Wrong. This seems especially true when dealing with celiac disease!

Your best bet is to listen to what your body is telling you because nobody knows you like you do.

Best of Luck!

Cleveland Bob B)

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I think your physician is about 1/2 right on this one.

An AGA IgA definitely is not enough for a diagnosis. The Anti-Gliadin tests are not very accurate at all. The tTG is the best serological test out there right now, followed by the EMA. A negative biopsy and a negative tTG would be grounds for saying no celiac. However, one sample is not going to work...the biopsy is worthless with only one sample.

What I would suggest is this: get a gene test. This will tell you if you can or cannot have celiac. If you have neither the HLA-DQ2 or HLA-DQ8, you cannot have celiac, and you can rule out celiac altogether. If you have either of the genes, then you should probably have an EMA and another endoscopy, making sure that they take multiple samples.

The part that I think is 1/2 wrong is that you can't have celiac. There is inadequate testing to rule it out altogether, because the tTG, though important, isn't the only way to diagnose or...not diagnose.

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Guest nini

I agree that listening to your body is very important...

I also believe that gluten is toxic for way more people than just those predisposed to celiac through genetics.

Listen to your body, if it's telling you gluten is bad for you then by all means stay away from gluten!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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