• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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?
0

Rate this topic

16 posts in this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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).

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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. 

  • Upvote 1

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites
Ads by Google:


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. :)

Share this post


Link to post
Share on other sites

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. :)

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


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?

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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 :)

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


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!   ;)

  • Upvote 1

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

  • Upvote 1

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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."

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,142
    • Total Posts
      939,890
  • Member Statistics

    • Total Members
      66,131
    • Most Online
      3,093

    Newest Member
    Larryx
    Joined
  • Popular Now

  • Topics

  • Posts

    • My son is 13 and we have been dealing with his unusual issues for years. By 3rd grade, he was The Hulk, breaking things, punching holes in walls and raging. He had depression, anxiety and panic attacks. His skin would have rashes or turn bright red and i didn't understand why (now i know it's salicylic acid added to conditioner, sunscreen, lotion, ect). We realized that dyes were a problem and cut those out. Little by little, we removed sulfur, sulfites, preservatives, salicylates (aspirin-we assume he will be allergic to this but he has never had it and we won't ever test it, most fruits, spices, veggies and honey), nitrates, soy sauce and many more. He lived on an all home made, special diet and he was better but not well. (We did the Feingold and Failsafe Diet but that wasn't enough). He was diagnosed with hypersensitivity to medication by 5th grade (tried anti-anxiety meds-big mistake). Consecutive doses of anything would get stuck in his body and then the real fun started, full body rash, suicidal thoughts, vomiting and my least favorite-hallucinations. He was in the ER for a fall from a tree and they gave ibuprofen and Vicodin. Within 30 minutes the rash spread up and down his whole body (including under the damn cast). The worst night of my life was trying to keep him from breaking his own cast off and talking him down from trying to hurt himself.                                                                                                                                                                                                                                                             We tested my son for everything and anything, hormones, vitamin deficiency (later found out they don't test for nearly enough to really know) and thyroid. Everything was normal but a mildly low vitamin D level. He was very unhealthy, he was sick a LOT, allergies were bad, asthma and he developed food intolerances out of nowhere. We did a gluten/dairy free diet (because his sister is gluten/dairy free) but it made no difference and his diet was already so restricted. We did a year long food journal and also found an issue with pork, apples, citrus fruit, cinnamon, ect.  I researched my kid like it was my job. We tried many vitamins and supplements and he had bad reactions to many of them. I finally found a man with several of the same gene mutations (we tested with 23andme.com) who's Dr. thought it was a PST-Pathway issue. We decided to try the protocol of vitamins, supplements and amino acids to see if it made any difference and OMG, what a difference. At this point, we didn't have a pediatrician that actually listened so I asked several doctors about the specific vitamin/minerals/amino acids and kept all the does to a child size dose.  We had always used epsom salts as a response to a reaction in something, not as a preventative measure. We now soak his feet twice a day in Epsom salt water (or in the bath), it gives him a form of sulfur that his body was missing and now he can eat anything he wants (except soy sauce but we'll gladly leave that out). He takes molybdenum everyday with magnesium/calcium and vitamin D3 (and when we stop that, panic attacks come back. Weekly he takes milk thistle (we tried L-Glycine but too much gave him terrible insomnia (like 3 days of barely any sleep) and milk thistle works just as well to keep his liver open and working it's best), B vitamins, Cod liver oil capsules with Vitamins A and D and liquid Zinc.  His personality changed on the L-Glycine in a more outgoing way but then in a manic, not himself way so that scared us. Since the supplements started (6 months ago), his anxiety and depression is gone (and it was really controlling how we lived). He would never talk to people before...he was diagnosed with selective mutism but we felt that was incorrect and he was just very shy. He never liked talking with adults. Now, there is no problem, he is not super chatty with everyone but all he adults in our family noticed immediately. He is ready to stop home schooling and start high school next year. He has become a responsible, sweet, calm and caring child. No more daily fights, no more holes in the walls, no more rage. Our daughter has anorexia and we have been very busy dealing with her behaviors and missed the daily vitamins on occasion for several days....old son comes raging back. It doesn't take too long to figure out the mistake and gets him back where he needs to be. We did some genetic testing with a neurologist who specializes in metabolic function and while he tested for some helpful issues relating to hypersensitivity to medication, I still got the impression that he thought it was a placebo effect. We have burned through many therapists, pediatricians, a neuropsychologist, a psychiatrist, a gastroenterologist and possibly this neurologist. I hate not being taken seriously because while they may not agree with my ideas, they have nothing to offer in return.   
    • Yep no fruit, juice, sugar, or grains like oatmeal. The sugars glucose, fructose etc. Are common causes of flares in some. Sugar free fiber like nuts, but butters, cocanibs seem to be great for me. Keto diet sugar free high fat, mostly over cooked to mush or blended works great for me......heck as a baker I had to invent low carb, grain free, starch free bread. Sorta lead to a god like revelation and business took off with diabetics and my bakery.
    • Gastritis was my initial diagnoses before finding out I had celiac. The pains from the gastritis were terrible. I had to wake up in the middle of the night to eat cause I felt nauseous. The Doc prescribed me omeprozole and antacids. I took the meds for about a week but I cured it mostly by not drinking and eliminated caffeine intake. Alcohol was one of the main causes for mine 
    • The UC is a whole different beast. I’ve been eliminating tons of food. Meat is definitely good to me. I can eat all the steak, chicken, and pork without problems. I agree that paleo would be great for me. I’m gonna look more into their recipes.  Have you had any problems with fruits and veggies causing flare ups? I make smoothies with mixed berries, banana, gluten free oatmeal, spinach, and a splash of juice. It seems to be a cause. Maybe it’s the high fiber? I’m not sure. That and caffeine. I’m having a hard time eliminating caffeine though  
    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
  • Upcoming Events