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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Could This Be Celiac & Testing Question
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ML5    0

Hello. I just joined after reading so many helpful and informative posts. Makes me think I'm not crazy! Hoping for some insight from others.

We are waiting on celiac blood work results for my 7 year old daughter. I do not know the specific tests that were ordered other than celiac. She has had other "regular" blood work done recently (CBC, thyroid, sed rate). Everything is normal.

She also had ImmunoCAP testing done 1 1/2 months ago. Positive for allergies to Sesame, Soy, Peanut, Corn and Wheat. We eliminated all of these from her diet -- no easy task -- for 3 weeks. Skin issues improved (rash, itchiness).

We saw an allergist last Wednesday who said she wasn't convinced her skin symptoms were related to food allergies (also allergic to molds, trees, grass; diagnosed with allergic rhinitis and mild intermittent asthma). She told us to do a food challenge and reintroduce one new food allergen per week and monitor symptoms. We started with wheat (it was her lowest score; .82).

Other symptoms she has been having:

Constipation -- for 6 weeks (1 BM in last 10 days or so even with Miralax)

Severe Reflux -- didn't know this was back; had stopped meds since "volcano" feeling up high was gone; pain in lower abdomen I attributed to constipation; back on Prevacid now

Stomach pain - "my tummy hurts" - often can't explain specifics

Sore throat -- recent, assume due to reflux

Fever - low grade fever since Fall of 2009. Did blood work then and never determined cause. Last couple of months she has fluxuated up to 100. Note: before low-grade fever began, she had strep once a month three months prior, and a flu shot 2 weeks before.

Weight gain - She will be 8 this month. She is 25% in height. In 13 months she gained 25 pounds (10 in the last 5 1/2; 15 the 8 months before).

Aches and pains - can't tell for sure if this is joint/bone or muscle pain.

Low energy - Less stamina. Less interest in playing outside than previously (has a sister 1 year older and she can't keep up with big sis' activity level).

"I don't feel good" -- hear this many times a day

Tic? - She has a "one-eyed blink" that comes and goes -- has had for years; saw a pediatric neuroligist with no explanation.

Questions:

1. Does this sound like Celiac symptoms?

2. Could this be a reaction to gluten: She started back on wheat last Wednesday. Had cookies, pizza, bread over next few days. Monday had crackers at lunch and 2 slices wheat bread for dinner. Monday evening temp was up to 101.8. Gave her Motrin before bed. Next morning at 6:00 am temp was 103.5. No other viral type symptoms (still her other "regular symptoms above").

3. Wondering if going off gluten for 3 weeks, then back on 5 days before blood work will mess up the test results.

4. Doc we saw this week is a pediatrician and was recommended by a friend with celiac family. At what point do you decide to see a GI?

Any insight/comments/suggestions would be greatly appreciated!

Signed,

ML5 -- Worried Mom

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MitziG    94

It sounds A LOT like Celiac. Unfortunately, being gluten free for 3 weeks may have caused her antibodies to drop below detectable levels- but maybe not. My son still tested positive (but barely) after nearly a year of strict gluten-free. Mine and my daughter's antibodies dropped to zero almost immediately however.

Keep her eating gluten for now, as they will likely want to do anl endoscopy and she needs to be eating gluten for that. When all of the testing is over with, definitely do a strict gluten-free diet for a few months, even if the tests are negative. (If the tests are positive it is gluten-free for life however).

Hope you get some answers soon!

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Teri Lou    21

With regular fevers that high I would see a specialist. Some of the symptoms sound like Celiac but I haven't heard of high fevers with it? Does anyone else have comments about fevers with gluten intolerance/ celiac?

Good luck and hope they figure it out soon for you so she can feel better!

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beachbirdie    43

Hello. I just joined after reading so many helpful and informative posts. Makes me think I'm not crazy! Hoping for some insight from others.

We are waiting on celiac blood work results for my 7 year old daughter. I do not know the specific tests that were ordered other than celiac. She has had other "regular" blood work done recently (CBC, thyroid, sed rate). Everything is normal.

She also had ImmunoCAP testing done 1 1/2 months ago. Positive for allergies to Sesame, Soy, Peanut, Corn and Wheat. We eliminated all of these from her diet -- no easy task -- for 3 weeks. Skin issues improved (rash, itchiness).

We saw an allergist last Wednesday who said she wasn't convinced her skin symptoms were related to food allergies (also allergic to molds, trees, grass; diagnosed with allergic rhinitis and mild intermittent asthma). She told us to do a food challenge and reintroduce one new food allergen per week and monitor symptoms. We started with wheat (it was her lowest score; .82).

Other symptoms she has been having:

Constipation -- for 6 weeks (1 BM in last 10 days or so even with Miralax)

Severe Reflux -- didn't know this was back; had stopped meds since "volcano" feeling up high was gone; pain in lower abdomen I attributed to constipation; back on Prevacid now

Stomach pain - "my tummy hurts" - often can't explain specifics

Sore throat -- recent, assume due to reflux

Fever - low grade fever since Fall of 2009. Did blood work then and never determined cause. Last couple of months she has fluxuated up to 100. Note: before low-grade fever began, she had strep once a month three months prior, and a flu shot 2 weeks before.

Weight gain - She will be 8 this month. She is 25% in height. In 13 months she gained 25 pounds (10 in the last 5 1/2; 15 the 8 months before).

Aches and pains - can't tell for sure if this is joint/bone or muscle pain.

Low energy - Less stamina. Less interest in playing outside than previously (has a sister 1 year older and she can't keep up with big sis' activity level).

"I don't feel good" -- hear this many times a day

Tic? - She has a "one-eyed blink" that comes and goes -- has had for years; saw a pediatric neuroligist with no explanation.

Questions:

1. Does this sound like Celiac symptoms?

2. Could this be a reaction to gluten: She started back on wheat last Wednesday. Had cookies, pizza, bread over next few days. Monday had crackers at lunch and 2 slices wheat bread for dinner. Monday evening temp was up to 101.8. Gave her Motrin before bed. Next morning at 6:00 am temp was 103.5. No other viral type symptoms (still her other "regular symptoms above").

3. Wondering if going off gluten for 3 weeks, then back on 5 days before blood work will mess up the test results.

4. Doc we saw this week is a pediatrician and was recommended by a friend with celiac family. At what point do you decide to see a GI?

Any insight/comments/suggestions would be greatly appreciated!

Signed,

ML5 -- Worried Mom

Some of the symptoms do sound like they could be celiac, but there is likely something else going on as well. Celiac would not necessarily cause fevers, a low-grade fever is generally a sign of infection somewhere. Among the tests they did before, was your daughter tested for juvenile rheumatoid arthritis? That causes a lot of similar symptoms and actually can be related to celiac.

Did the do an ANA test?

Also, if she is having a continuing sore throat, and has a history of strep, I'd ask them to culture the throat for what IS there, not just to rule out strep. They also could do the long version, the rapid strep doesn't always catch it. My daughter was having throat trouble for over six months, they kept testing for strep and finding nothing. I finally got frustrated with the docs and said "it is NOT NORMAL to have swollen inflamed tonsils all the time, that are also draining pus. Can you pleas culture this throat and find out what is growing there?" Turns out my DD had a strep B infection, not strep A which is what they are looking for with the tests they usually do. Strep B is not as big a deal as strep a, but it WAS causing a problem.

Could she possibly have a mononucleosis/glandular fever thing going on? She is young, but that's also a possibility.

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ML5    0

ANA was negative in 2009. Doc said if rheumatoid problems it would have shown up then. Of course this is the same doc who said celiac is diarrhea only; not constipation.

Sore throat is recent. It seems to correlate with other reflux symptoms. Allergist looked at it and did comment her tonsils were large, but said that was just how hers are. ???????

We are waiting on celiac blood results as well as ASO titer. ASO will show strep infection if present? I don't know about the strep A vs B.

I don't think mono was tested. Will keep this in mind.

Thank you for the comments!

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