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How Do You Know If It Is Celiac?

madiganmommy

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madiganmommy Newbie
madiganmommy
Posted

Background info: When my daughter was born, she breastfed great in the hospital. We came home and she start to eat less & less, until refusing to eat at all (at breast or expressed in a bottle). Her belly was bloated/distended and she was constipated as well. At one week old she was admitted to Children's hospital, they did upper GI lower bowel follow through, barium enema, MRI, anal biopsies, the works. Everything was "normal". They took her off breastmilk, and put her on Alimentum. Finally she would drink on her own.

After 3 weeks in the hospital, we went home with glycerin suppositories daily - Ugg! That was fine until she was about 6 months. Then we switched to Milk of Mag for fear of anal retention. Life was good.

The fun began again when we introduced solids. She would throw up virtually every meal, maybe not everything she ate, but most. After several months, GI wanted to get her on prilosec (about 15 months old) to prevent damage to her esophogus. She hated the taste of prilosec, so after only 2 days she started refusing all oral meds including her antibiotic for ear infections, and Milk of Mag. So we turned to Miralax to help her stool and prevacid to help her esophogus. I HATE all of these medications! After seeing 2 GI docs, and ENT (for cronic ear infections), we were able to do a upper intestinal endoscopy at the same time as getting tubes.

Results: damaged villi - GI doctor suspects celiac. So we did a blood test on Monday and IgA = 31. The normal range from Kaiser says 15 - 94. How do you know if your child has celiac if blood test is "normal", but biopsy shows damaged villi? Can milk of mag, miralax, prilosec, or prevacid damage villi? Also, we went gluten-free after the blood test and vomitting has drastically reduced. I just want to cry, she is only 16 months.

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mushroom Proficient
mushroom
Posted

Welcome to the forum, Madigan's mommy. It is not reallly clear what test they did on Madigan. The total IgA test only shows if she produces normal IgA antibodies. If they want to find out if she is celiac from blood work they need to perform other blood tests. The fact that she had damaged villi at her age would seem to indicate celiac disease. But to verify with blood work they would need to perform the following blood tests in adddition to the test they performed which only indicates that she produces normal amounts of IgA antibodies (which she apparently does). The other tests indicate if she is celiac::

Anti-Gliadin (AGA) IgA

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Ask them to run these tests ASAP, and if they will not accept the damaged villi as proof, if any of these tests is positive she is most definitely celiac.

None of the drugs you mention would damage her villi/ And the fact she has responded to gluten free is positive. Get the blood tests run as soon as possible because recovery can begin almost immediately.

Di2011 Enthusiast
Di2011
Posted

My son (Liam) didn't sleep through the night until he was 22months old. He ate and didn't have your childs issues but he was a very fussy eater (I now suspect he is also gluten intolerant.. now he is, mostly, coming along on for the ride on my gluten free diet).

I was absolutely drained, almost delusional at work some days because of the exhausting hours he was keeping. This was nothing compared to what you have been going through all these months. So....

Remember to look after YOU. I know it is hard with a little one even if they are "easy" but after so many months you are probably stressed and exhausted (?). If you dont already, start now:

* ask family, friends and neighbours to help out with some of the other household jobs (even if you have the time you may not have the physical/mental capacity to do what you do or think you should be doing)

* take the two of you out for lots of walks

* eat well and enough (YOU)

* drink LOTS of water

* have lots and lots of hugs ((my 9y/o will give me a hug even in his classroom. His mates gave him a hard time for a while but eventually they realised that Liam loves his mum and that he didn't care what they thought))

Roda Rising Star
Roda
Posted

With damaged villi on biopsy, that is diagnostic of celiac. You may want to consider testing for all first degree relatives (mom, dad and siblings). The risk for celiac increases to 1 in 22 from 1 in 133. The blood tests for you would be the same as your daughter. Mushroom listed them above.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Some of us have negative blood work. I think it's around 20-30% of us? I was DX from the damage to my villi, like your baby.

The fact that you've seen some improvement on gluten-free is encouraging.

Hang in there..

(((hugs)))

madiganmommy Newbie
madiganmommy
Posted
  • Author

Welcome to the forum, Madigan's mommy. It is not reallly clear what test they did on Madigan. The total IgA test only shows if she produces normal IgA antibodies. If they want to find out if she is celiac from blood work they need to perform other blood tests. The fact that she had damaged villi at her age would seem to indicate celiac disease. But to verify with blood work they would need to perform the following blood tests in adddition to the test they performed which only indicates that she produces normal amounts of IgA antibodies (which she apparently does). The other tests indicate if she is celiac::

Anti-Gliadin (AGA) IgA

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Ask them to run these tests ASAP, and if they will not accept the damaged villi as proof, if any of these tests is positive she is most definitely celiac.

None of the drugs you mention would damage her villi/ And the fact she has responded to gluten free is positive. Get the blood tests run as soon as possible because recovery can begin almost immediately.

Thanks, Mushroom. They just drew the blood on Monday, and said it may take a week to get all the results back... I will check with the GI doctor to make sure all of those others are covered and maybe the results just aren't done yet.

madiganmommy Newbie
madiganmommy
Posted
  • Author

Confirmed celiac. Elevated Gliadin IgG and biopsy. All other blood tests were normal. Now the fun begins...learn a whole new diet. Any suggestions for websites with recipes or helpful hints.

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mushroom Proficient
mushroom
Posted

Confirmed celiac. Elevated Gliadin IgG and biopsy. All other blood tests were normal. Now the fun begins...learn a whole new diet. Any suggestions for websites with recipes or helpful hints.

I'm glad you got a definitive result for him. Welcome to our club where you can freely ask about anything you want and someone will be able to answer for you. It is a steep learning curve for the first few weeks, but gets easier every day :)

StephanieL Enthusiast
StephanieL
Posted

What do you need help recreating? It isn't "easy" but if gluten is the only thing you have to learn around, it's totally doable!

Some staples people here like (I have not tried them all as we have a long list of food allergies as well):

Udi's bread

Van's Waffles

Rice cakes

Chex's and the new gluten-free Rice Krispies

Mary's Gone Crackers crackers

Cherrybrook Kitchens Pancake/Waffel mix

King Arthur's Flours

Again, I have nor tried all of these but it's a place to start. When we went gluten-free, I chose to research and find ONE replacement for staple foods a week. Sometimes I would do 2 but it depended on what was going on that week.

Again, ask away! Good luck!

kitgordon Explorer
kitgordon
Posted

Betty Crocker makes gluten free Bisquick and cake, cookie and brownie mixes. They also have a website with gluten free recipes. If you want to take a shot at making bread, the Gluten Free Pantry Favorite Sandwich Bread mix is good. Tinkyada rice pasta. Glutino pretzels.

This forum is an awesome source of info. We have a recipe section, and try the search for anything you want to know.

Good luck, and hope your baby gets better and better. This is doable, I promise!

GretaJane Newbie
GretaJane
Posted

Crazy how most docs don't recognize the possibility of gluten in breast milk!!! My son, exclusively breastfed, had chronic diarrhea until he was about a month old, when I eliminated gluten. I tried eliminating dairy and soy first, but no change until stopping gluten. Every time I cheated, he suffered diarrhea. Same when he started solids. He has had the celiac genetic tests and is at the highest risk. The only true diagnostic tests available require him to eat gluten for 4-6 weeks first. I just can't send him to school with diarrhea. He is 4 years old. So no diagnosis. My husband thinks I am making it all up, because the GI doc has not confirmed. He laughs when I tell him something has gluten in it that is not obvious, like some deli meats. This is so frustrating. I just need to vent.

salexander421 Enthusiast
salexander421
Posted

Crazy how most docs don't recognize the possibility of gluten in breast milk!!! My son, exclusively breastfed, had chronic diarrhea until he was about a month old, when I eliminated gluten. I tried eliminating dairy and soy first, but no change until stopping gluten. Every time I cheated, he suffered diarrhea. Same when he started solids. He has had the celiac genetic tests and is at the highest risk. The only true diagnostic tests available require him to eat gluten for 4-6 weeks first. I just can't send him to school with diarrhea. He is 4 years old. So no diagnosis. My husband thinks I am making it all up, because the GI doc has not confirmed. He laughs when I tell him something has gluten in it that is not obvious, like some deli meats. This is so frustrating. I just need to vent.

I know, this frustrates me so much! I went to an expo recently to hear a GI speak who is the celiac expert around here. Everything she said was great but she did make the comment that gluten does not get into breastmilk. I'm sorry but that is wrong! Maybe there aren't any studies on it I don't know, but in my own experience and from talking to others it is definitely obvious that gluten DOES get into breastmilk.

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