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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.

Just Diagnosed With Celiac Yesterday
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9 posts in this topic

Hi All,

I just joined this forum today.  I was just given the news by my doctor yesterday that I tested positive for Celiac.  He said that my Endomysial Antibody IgA, t-Transglutamines (tTG) was >100 positive along with Immunoglobulin A, Qn, Serum 436.  I was already on a low-gluten diet for a week or two leading up to the testing, since I had a hunch that is what is was and so did the immunologist.  In the past year, I've been to a rhuematologist, dermatologist, family physician, etc. all treating my symptoms, so I figured that something was causing it all.  I've always had some constipation and bowel issues, skin issues, blood sugar problems, chronic anemia, but in the past 12 months, I started to develop joint pain and inflammation, had elevated ANA levels, confused RA docs, along with exzema. 

 

The immunologist does not feel that a biopsy is necessary, since he feels the test results were obvious enough to him to just start a gluten free diet.  Did anyone else have a physican give a Celiac diagnosis w/out a biopsy?

 

Thanks,


Ruth

Edited by ruthie_ray
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I never had a biopsy either. Some doctors don't push for one when you have a positive EMA IgA because that test indicates that there is a significant amount of damage in your intestines already. That test, along with a positive ttg IgA is a pretty clear diagnosis.

 

Did they check your iron, ferritin, calcium, D, B12 and potassium levels too? Celiacs are often low in those areas because of absorption problems in their intestines from the damage (as I understand it).

 

Anyway, welcome to the forum, and I hope you feel well soon!

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Welcome to the forum Ruthi! :)

 

I've read on here that some doctors will diagnose based on blood antibodie tests and response to the gluten-free diet.  If you stop eating gluten and you get better, plus you had positive antibodies and they decrease over time, then it seems pretty obvious you have celiac disease.  Sometimes it can take months or years to recover from celiac though, and that can sometimes make people question their diagnosis.  If you are sure you can stick to the gluten-free diet, then it might make sense to get he endoscopy done.  Otherwise though there isn't a big need to have it.  Unless you want o participate in clinical trials, where they always seem to require it.

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They did check my iron.  I've been sort of chronically anemic for a few years and supplements haven't been working, so they said my iron was low.  I am low in B12 and deficient in vitamin K.  Over the years there has been many times when I've had low iron, low B12, and every time, I was told to take supplements.  I eat lots of healthy foods, I'm already on (for more than a year) a almost 40-50% fruits/veggies diet and I juice 1 meal each day, eating all fiber, pulp with spinach, kahl, celery, cucumber, apples, ginger, strawberries, bluberries, lemon. Unfortunately, on the side of my large juice, was a little cheese and whole wheat crackers, chock full of gluten.  At breakfast, I usually have fruit and a Whole grain english muffin.  At dinner, a salad or a few veggies servings, protein and something whole grain.  I buy hormone free dairy and meat.  Thought I was healthy eater, but oddly didn't feel great and had all of these weird issues and skin probs.  I'm just glad to know that if I cut out gluten it might make a difference.    Thanks for the info.  I'm trying the gluten free diet.  Need to head over to "Sprouts" tonight. Thanks

I never had a biopsy either. Some doctors don't push for one when you have a positive EMA IgA because that test indicates that there is a significant amount of damage in your intestines already. That test, along with a positive ttg IgA is a pretty clear diagnosis.

 

Did they check your iron, ferritin, calcium, D, B12 and potassium levels too? Celiacs are often low in those areas because of absorption problems in their intestines from the damage (as I understand it).

 

Anyway, welcome to the forum, and I hope you feel well soon!

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Thanks for the info.  I'm going to try the gluten-free diet.  I'm pretty disciplined, so I think I can stick to it, but I feel like to need to educate myself, since I use a ton of lotions, make-up, lip products, hair care, etc. and I'm worried I'll accidentally ingest gluten unintentionally.  Been looking for some good information to see which of my products might contain gluten or what some of the code words in products are to determine if they contain gluten.  Thanks again.

Welcome to the forum Ruthi! :)

 

I've read on here that some doctors will diagnose based on blood antibodie tests and response to the gluten-free diet.  If you stop eating gluten and you get better, plus you had positive antibodies and they decrease over time, then it seems pretty obvious you have celiac disease.  Sometimes it can take months or years to recover from celiac though, and that can sometimes make people question their diagnosis.  If you are sure you can stick to the gluten-free diet, then it might make sense to get he endoscopy done.  Otherwise though there isn't a big need to have it.  Unless you want o participate in clinical trials, where they always seem to require it.

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Don't want to lecture you or anything but your blood tests indicate you have Celiac Disease which is more serious than just a simple food intolerance.  Your word choices like "gluten light" and "If I cut out gluten" and "going to try the diet" make me concerned.  You need to be 100% gluten free - all the time - from now on.  No cheating (special occasions, holidays, just because your finally feeling good, etc.) ever.  It is an autoimmune disorder that, if triggered, can lead to other problems.

 

All your first degree relatives should be tested as well - even if they have no symptoms at all.

 

Your doctor is right that you don't need a biopsy - it is clear from your blood tests.

 

Welcome to the forum.  I found it very helpful when my son and I were first diagnosed.  It sounds like you already eat pretty healthy so you should have no trouble.  Best of luck to you.

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Hi Cara,

 

Thanks for the info.  I was only on a "gluten-light" diet for a week or so leading up to the testing since I was starting to assume that I could have Celiac disease.  Now that I have a confirmed diagnosis, I plan to treat it like a life-long issue rather than a temporary test.  I will find it hard with certain things, like holidays.  We spend Thanksgiving and Christmas with my husbands family out of state and they are all overweight and on the SAD diet.  I already had trouble and usually feel sick by the end of our 7-10 day visit, since all they eat are mostly starchy, unhealthy foods with an occiasional frozen veggie or canned veggie thrown in.  They are from Cincinatti and a mealtime favorite in Ohio is Chili poured over Spaghetti noodles.  I've never eaten it, but I always feel so rude, running to the store once we land on the plane and picking up some fresh veggies and healthy snacks for my kids while we are in town.  At Thanksgiving, I eat the turkey and always make a side salad and everything else is white or yellow on the table, but my green beans and salad.  My husband has become so much more healthy since we were married and now he is even a juicer, but still hard at the holidays.  While at home, it should be easy.  I work from home and have the freedom to make my own lunch each day.  I've addressed all of the obvious items, like breads, rices with hidden gluten, corn products with hidden gluten, etc.  The hard part will be odd things that I may have never thought contained gluten, like spice mixes or marinades that I use for my meat.  I was able to locate some gluten free brown rice, made a stirfry with some gluten free mardinade I found at the store.  I think I may be trying some new products just to get some variety.  Thanks for the info and reminder that it isn't something to take likely.  My next step this week is finding new make-ups.  I haven't been wearing much this week, except minersals which say they are gluten free and burts bees lipgloss which said it was too.  Unfortunately, I think I have to buy new eyeshaddow, foundations, liners, mascara, etc. since most did not appear to be gluten-free. 

Don't want to lecture you or anything but your blood tests indicate you have Celiac Disease which is more serious than just a simple food intolerance.  Your word choices like "gluten light" and "If I cut out gluten" and "going to try the diet" make me concerned.  You need to be 100% gluten free - all the time - from now on.  No cheating (special occasions, holidays, just because your finally feeling good, etc.) ever.  It is an autoimmune disorder that, if triggered, can lead to other problems.

 

All your first degree relatives should be tested as well - even if they have no symptoms at all.

 

Your doctor is right that you don't need a biopsy - it is clear from your blood tests.

 

Welcome to the forum.  I found it very helpful when my son and I were first diagnosed.  It sounds like you already eat pretty healthy so you should have no trouble.  Best of luck to you.

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Hi Ruthie,

 

It sounds like you have a great start: A definative diagnosis and some learning about gluten.  I was diagnosed by a trial diet and then a genetic test.  I had the genes for celiac and a positive response to the diet.  The MD felt there was no need for a biopsy.  Since, we have found more evidence that I am suffering from celiac.  But I am getting better.

 

Get better,  ***

Diana

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Commenting on the above: when EMA positive, that tells you there is significant intestinal damage- my 8yo was EMA positive, positive TTG, and very low vitamin D at time of testing- but her biopsy was and I quote "beautiful" according to our first ped GI who then informed me to keep feeding her gluten- saw a second opinion who said that is crap, this child cleary has active celiac (I have celiac also), and to treat her as such. Drew me a picture of how easy it is to miss damage in children on biopsy. 6 months gluten free, she is EMA negative, TTG normal, and vitamin D tripled. :)

So.....the way I understand it is that EMA directly coorelates to intestinal damage- we should assume that my daughter had damage then, especially with her low vitamin D, correct? It has bugged me for 6 months that they found no damage, as a parent you just wonder! Now that she is EMA negative, does this mean healing has been totally successful then? I assume so if her vitamin D is now excellent (being absorbed). It just irks me that we put her through biopsy, they took plenty of samples, and it was missed!

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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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