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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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After my recent diagnosis I decided it was important to have my kids tested too. The results of the Celiac panel are not back yet. However, the stool results have come back. The baby's results are very high.

Fecal fat 42% normal range is less than 20%!

This would make sense because I have been telling the doctor for the longest time that the baby's poops are huge and very stinky! He was also diagnosed with slow growth as an infant and I had to stop breast feeding him and put him on high calorie formula before he would gain weight. He is extremely tall but still very light. He is in the 95% for height and 35% for weight, so he's thin but not emmaciated at 26 pounds.

I called the specialist right away when I got the results. The results are being faxed over to him so he can see for himself. He thinks it may be wrong. He said "I don't know why they did it that way. I'll look at it and see if thats correct." Now, his regular pediatrician has seen the results and he is concerned. The regular pedi had nothing to say about the testing being done incorrectly. I felt a little brushed off, as if I was worried for nothing. I'm hoping he gets back to me soon. I'm tired of chasing doctors for answers. If my son's results are correct I woud like to schedule an endoscopy very soon to evaluate the damage and get him started on a proper diet. I think a proper diagnosis is very important if his damage is severe enough to cause such malabsorbtion. That way doctors will take this seriously and work with me to make him healthy. I'm so frustrated.

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Hi,

A friend of mine's 13 month old was just diagnosed. I believe his blood tests were iffy but he had fat in his stool. On his endoscopy the GI said it looked normal but the bx came back for all three markers of Celiac.

Wouldn't it be nice if Celiac didn't fall under just GI docs. I guess it has to since it deals ultimately with the intestines but I think it would be great if every town had a doctor who dealt strictly with Celiac and all its glories. Then, they could be up to date and gather all the information out there, etc. Dream on, I guess.

Good luck!

Tip

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Hi,

A friend of mine's 13 month old was just diagnosed. I believe his blood tests were iffy but he had fat in his stool. On his endoscopy the GI said it looked normal but the bx came back for all three markers of Celiac.

Wouldn't it be nice if Celiac didn't fall under just GI docs. I guess it has to since it deals ultimately with the intestines but I think it would be great if every town had a doctor who dealt strictly with Celiac and all its glories. Then, they could be up to date and gather all the information out there, etc. Dream on, I guess.

Good luck!

Tip

His regular pedi ordered IGA and TTG initially and we learned that he is IGA deficient. That said, I don't think the answer is going to lie in the bloodwork anyway.

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I'm so frustrated I could scream! I just got off the phone with the boys' pedi and that got me no where! He basically is blowing me off and telling me to take all questions to the gi specialist. He has the lab results and he's telling me they look "ok". Really, a fecal fat of 42% is ok? WOW! Could have fooled me! Now they're both on the inaccuracy kick. Ok so order it again! Someone order something to prove this result right or wrong! Is it that hard to take a pen to paper and hand it to a secretary to fax? I don't think so. The doctors I work for do it all the time. I'm ready to expolde. If this was one of thier kids, I wonder how laid back they would be about the whole thing then.

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If I was you, I would call the pedi tomorrow morning, and tell them you will drop by at (whatever time you choose) to pick up the copies of the results.

You have a right to your own copies, they can't refuse to give them to you. Once you've got it, post all the numbers here, and somebody will be able to tell you what it all means.

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If I was you, I would call the pedi tomorrow morning, and tell them you will drop by at (whatever time you choose) to pick up the copies of the results.

You have a right to your own copies, they can't refuse to give them to you. Once you've got it, post all the numbers here, and somebody will be able to tell you what it all means.

I'm waiting for the specialist to call me back now. I do plan on picking up copies of everything at the pedi today. As of last night the pedi was saying he still didn't have everything from the specialist yet. I'm going to call there and see if the rest came in yet. If not I'll call and harass the hospital.....AGAIN!

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Ok so I got the results from the pedi today. Unfortunately, there were no normal values ranges listed, only the results. They were flagged as high (H) or low (L) if they were abnormal. Here are some of the numbers that concern me.

For Braedon 10 months:

MCV 73.8 L

MCH 25.6 L

HDW 2.70 L

absolute eosinophil count 0.43 H

Potassium 4.52 H

Glucose 104 H

CO2 21 L

Iron, Plasma 39 L

Platelet 463 H

For Kevin 7.5 years:

MCV 75.5 L

MCH 26.7 L

RDW 12.4 L

HDW 2.48 L

ABSOLUTE LYMPHOCYTE COUNT 2.98 H

IGA 59 H

Both boys will be having an endoscopy. Kevin will also have a colonoscopy. Braedon is also going to have a sweat test to test for Cystic Fibrosis. I'm really quite nervous and the thought of waiting until mid August for all of this is upseting.

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My DD and I have Celiac, but I also have a niece with Cystic Fibrosis. The two diseases are so closely related that we also had to do a lot of testing to make sure we were being diagnosed correctly (and still sometimes I wonder). If it is Cystic Fibrosis your childs skin should taste salty (more than a normal person would). One of the issues with Cystic Fibrosis is that their body doesn't have the ability to hold salt, therefore they eat a lot of salty foods and drinks and they also sweat enormous amounts of salt. That is why they do a sweat test - to see the amount of salt per amount of sweat collected. be sure the test is done correctly - some places just test how much sweat they get (the wrong way) they should test the amount of salt IN the sweat. At our childrens hospital here they will only accept labs done themselves, because so many are done the wrong way. ALso the fatty poops are a big sign. For CF they should also look greasy and float on the top of the water. Whatever happens just know that you are on your way to making your child healthier and happier. And I would Fire your DOc. for treating you that way - YOu know your kids BETTER than ANY doctor or Lab ever could.

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Im glad they are doing the testing. I really have no reason to believe it is CF. The most obvious reason is that every child born is MA is screened before leaving the hospital. He was not positive at that time. Also, he does not have the salty skin, family history, or any pulmonary issues at all. However, I understand the need for the testing. Its just something else to make me nervous now. I can't wait to have the testing part over with.

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We did the sweat test and it was negative! So thats good news, no CF. Now we have to schedule a gastroscopy and sigmoidoscopy for both kids. Maybe we can finally learn something that will help them!

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With that high glucose are they looking at his pancreas?? Diabetes and Celiac go hand and hand.

I just dont understand how your Pedi could say everything is fine when all of those are either H or L????

Once again I cannot use the word I would like. <_<

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With that high glucose are they looking at his pancreas?? Diabetes and Celiac go hand and hand.

I just dont understand how your Pedi could say everything is fine when all of those are either H or L????

Once again I cannot use the word I would like. <_<

After looking up the norms for those results, I saw that they were all borderline high or low. There were no drastic numbers. At least now we are scheduling the scopes so we'll get a better idea. If those are negative we'll move to the next thing. I will probably try making them gluten free even if the biopsies are negative just based on my own success. I would like a proper diagnosis though if possible.

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