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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

High Test Results In Child W/o Symptoms - Is Biopsy Necessary?
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Hello, my 8-year-old daughter was being tested for a pet allergy and her doctor did some blood work. Her allergy testing was all negative except for these results:

 

IgA Gliadin = 63.1

 

IgA TTG = GREATER THAN 100

 

EDIT: I forgot to mention the IgG Gliadin = 53.7

 

The reference value says:

Less than 20: Negative
20 to 30: Weak Positive
Greater than 30: Strong Positive

 

She doesn't have any symptoms that I've read about, but the allergy doctor has referred us to a gastroenterologist who says we need to schedule a biopsy.

 

I'd prefer not to do a biopsy if it's not necessary. Could she have celiac disease without symptoms? Is it necessary to do the biopsy? Is this something we should even be concerned about if it's not bothering her at all? Could those blood test results indicate a different problem?

 

I'm sorry for all of the questions, I'm just really unfamiliar with gluten/ celiac issues altogether. Thanks!

Edited by PLGW2012

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Hello, and welcome to the board.

 

Yes, it is possible to have celiac without recognizable symptoms, otherwise known as latent or silent celiac.  Many people discover accidentally that they have it when testing is being done looking for something else and the celiac screen is tossed in as an afterthought.

 

The TtG test checks for autoimmune antibodies in the gastrointestinal system, so is not completely specific for celiac although strongly indicative.  It is, however, possible for it to have other causes, which is why they recommend the biopsy to confirm the diagnosis.  It is really good practice to have a firm diagnosis, particularly for a child, so that special precautions can be taken during her schooling because, yes, she does need to be protected from gluten.  Even though she does not appear to be suffering any ill effects now, if she is celiac gluten is at work somewhere in her body and could  manifest in symptoms at any time, and in any of the myriad ways, from rheumatic pain to skin conditions, to neurological manifestations like ataxia, tingling and numbness, migraines.  It is just as important for a silent celiac to be gluten free, but in many, many ways harder because you don't experience the reinforcement of suffering symptoms, and by the same token it is hard to tell if you have ingested gluten :unsure:   If I were you I would get the biopsy. :)

 

Best wishes for a clear diagnosis and I hope you will not worry too much about the biopsy as it is a pretty routine procedure and she will not remember any of it (done under sedation, and they give Versed with it so she has no recall of it).

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Thanks, I appreciate the info! Does it matter that the numbers are so high? Maybe they are not that high, but if greater than 30 is a strong positive, does that mean 60+ & 100+ indicate something serious?

Also, is there other testing aside from the biopsy that I should request?

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I just wanted to toss in there, that between my going gluten free, and putting the pets on wheat/barley free food (long story, we ended up with a dog who's very allergic to wheat, and we need to keep his diet clean, and we have one horse with allergies to certain hays, barley, and soy)  my allergies to my furry pets practically disappeared.  Now, the stuff they roll in sometimes, outside, or in the barn, and then try to bring in on their hair still bothers me, so it's not perfect, but it is a whole lot less than having my immune system on hyper overdrive all the time.  If you end up taking your daughter gluten free, don't forget about the possible gluten in pet foods, pet treats, pet litter, and pet bedding. 

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Sorry, one more question: Is there a strong likelihood that the biopsy will show that she doesn't have celiac? Or is the 100+ result a good indicator that she does have it?

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No, the magnitude of the number doesn't mattter, although gives a greater likelihood of a positive biopsy IMO.  Be sure that your GI takes at least six biopsy samples to be sure. :)

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As Neroli said, the ttg IgA can indicate other problems like an infection (ex. e.coli) or other autoimmune diseases (Hashimoto's) but when she also has two other very positive test results, I would say that it is almost a certainty that celiac disease is the problem, but I'm not in the medical field and this is just my own opinion based on what I have learned.

 

 If she does have the biopsy, ensure that at least 6 samples are taken so if the damage is patchy they'll be a bit more likely to find it. I've heard stories from people who have the positive blood tests but whose diagnosis is then doubted when the biopsy comes back negative (most likely because the damaged areas were missed).... oops, I just re-read the above and Neroli said that too. :P

 

I'll just say, best wishes. :)

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Thanks everyone! We are going through a local Children's Hospital. I will make sure I mention the 6-sample thing for the biopsy.

 

The allergy doctor was kind of excited about it, and kept saying, "Wow, we test for this all the time and we rarely get kids with results like this." He also said he would be stunned if she doesn't have Celiac. I'm glad he's so interested but it's not very exciting for us.

 

One thing that I am stressing about is that my daughter is asymptomatic, except for one thing - she has gotten terrible mouth sores for years. We haven't been able to figure it out, until I read on one of the posts on this forum that mouth sores could be a sign of celiac. Now I'm wondering if she's had this for years and how much damage has been done? Was I permanently injuring her everytime I fed her something with gluten in it?

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OK, sorry, I have more test results!

 

Endomysial Abs, S (IgA) Positive Titer 1:160 (high)

 

and

 

Immunoglobulin A 74 (The range says 28-180, so I assume this one is OK).

 

My doctor is a little hard to get ahold of; does anyone else know what these mean? Do ALL of these tests measure gluten intolerance? And is gluten intolerance the same as celiac disease? Thanks!

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Welcome!

 

Your daughter's IgA is indeed in normal range -- which means all of the celiac antibody tests are accurate.

 

I agree that with "silent" symptoms I would opt for the endoscopy as this information may be valuable both to see if the damage is significant or in the future for follow up.

 

Please don't think that you could have prevented this by not feeding her gluten to begin with....how could you have known?  and yes, you will likely see a reduction or complete disappearance of mouth sores.  My kids went gluten-free at 13, 15 and 25 and all three have no more mouth sores....the middle one had them nearly every month growing up and the docs just shook their heads and gave us a cream that did help speed the healing.

 

Once you are done with the diagnosis process you can remove all sources of gluten from her diet.  You may be surprised to find that she did have other symptoms that she just thought were "normal" -- society rarely talks "poop" with our kids after the diapers are in the past -- and our doctors rarely ask for details of our experience in the bathroom.  I was 43 being diagnosed with celiac before I had my first frank discussion with my doc about poop -- was more than a little embarrassed when he started talking about it -- but somehow he knew exactly what type of constipation I had dealt with since I was a kid.  Sorry...guess that might of been TMI...just wanted to point out that my children and I had many celiac symptoms that we either dismissed or were dismissed by excellent doctors.

 

Take this time while you are waiting for the appt with GI to start reading and preparing for removing gluten from your world.  I will not lie -- it is a tough transition for the first few months, but it does get much easier.

 

One last thought -- Celiac Disease is genetic -- You, her Dad and any siblings need to be tested with a complete celiac panel every 3 years and more often should symptoms arise.

 

Good Luck to you and your family :)

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With a positive EMA (endomysial) test, and those other high numbers, your daughter definitely is a Celiac.  The biopsy will just be to see how much damage

there is.  That many positive tests, checking for reaction to gluten in the bloodstream and some for intestinal damage, are a slam dunk.  She is 8...she will heal and do just fine. This is a much easier time to be diagnosed....they even have gluten free pop tarts now!   ;)

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I am hopeful you will progress well through the transition.  You started well by asking here and there is much to learn.  I think you eventually will see that she will react to accidental glutenings, so that you will be able to tell.  Yet, some people don't.  I discovered more and more sensitivity and a change in my reactions since I went grain free.  I react now more like a celiac than I did eating continous gluten.  I am glad you discovered this while she is still young.

 

I know that feeling about protecting your child.  Feeling like you have been poisoning them all the way back.  One could not possibly know.  I myself had no family history and lacked classic symptoms.  But now you know and you may begin to learn what to do to help your daughter excell.

 

I wish you well.

 

Diana

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You are getting great info here - everyone's advice is right on.  Just want to re-state:  the blood tests are pretty clear that she has celiac.  If the biopsy comes back negative, DO NOT let your doctor tell you she doesn't have it.  It just means damage was not found.  

 

The tricky thing with her being asymptomatic is that it will be harder to tell if/when she accidentally has gluten.  You may find that after time (being gluten free) her reaction to gluten will change or become more severe.  This is not uncommon.

 

You are lucky you had a good doctor who ran the correct tests.  Once gluten free, she will begin to heal and be just fine.  Leaving it untreated can lead to other problems - some that cannot be reversed.  

 

We thought our son had very few symptoms (only behavior!)  but after a few weeks of being gluten free we noticed other changes.  He shot up three inches, he slept better, he was much more friendly and outgoing, more focused (homework), no more dark circles under his eyes, no more frequent bloody noses in the middle of the night, etc.  Not sure if they are all related, and we never really considered any of those things problems, but the change was noticeable.  

 

Strangely, his hair went from limp and fine to thick and curly . . . . gluten is some weird stuff.

 

Cara

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Thanks so much for all of the info! I'm so glad I found this forum. I'm especially curious now to see if there are symptoms she is having that we haven't recognized that may become more obvious as we start avoiding gluten.

Is celiac disease the same as gluten intolerance? I was mentioning to a friend that my daughter was diagnosed with celiac, and they said that one of their kids has a gluten allergy. I'm just curious if this are the same, or if there are differences.

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Thanks so much for all of the info! I'm so glad I found this forum. I'm especially curious now to see if there are symptoms she is having that we haven't recognized that may become more obvious as we start avoiding gluten.

Is celiac disease the same as gluten intolerance? I was mentioning to a friend that my daughter was diagnosed with celiac, and they said that one of their kids has a gluten allergy. I'm just curious if this are the same, or if there are differences.

This is an official explanation. The problem is, doctor's sometimes use the wrong terms and say things like " gluten allergy" instead of Celiac.

http://www.cureceliacdisease.org/archives/faq/what-is-the-difference-between-gluten-intolerance-gluten-sensitivity-and-wheat-allergy

"What’s the difference between celiac disease, gluten intolerance, non-celiac gluten sensitivity and wheat allergy?

We use “gluten intolerance” when referring to the entire category of gluten issues: celiac disease, non-celiac gluten sensitivity and wheat allergy.

Celiac disease is an inherited autoimmune disorder that affects the digestive process

of the small intestine.

“Non-celiac gluten sensitivity” (what many call “gluten intolerance”) causes the body to mount a stress response (often GI symptoms) different from the immunological response that occurs in those who have celiac disease (which most often causes intestinal tissue damage).

As with most allergies, a wheat allergy causes the immune system to respond to a food protein because it considers it dangerous to the body when it actually isn’t. This immune response is often time-limited and does not cause lasting harm to body tissues."

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Re: the "gluten allergy" thing, I often say to others that I and my son are "allergic to gluten" because it makes people pay attention. Then instead of them thinking it's not really a severe issue (which they sometimes assume if I say "intolerance), they treat it like a big deal (which, really, it is). So sometimes the use of the incorrect term is intentional.

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