Emma’s celiac results (Christine/kevieb)

[Anonymous]

Well after Emma’s biopsy showed damage to her small bowel they took 3 vials of blood and 4 vials of stool and ran a bunch of tests including Ttg and everything came back negative. They checked for anemia and we are safe on that as well (I was anemic most of my childhood). They checked for malabsorbtion and it was negative which makes no sense to me b/c she has fatty stools (they float). So basically we are all stumped. So instead of completely taking out gluten right now (since she is already dairy and soy free) they started her on another allergy med, singular, on top of the periactin. They use allergy meds to heal the GI tract from food allergies/intolerances. When I tell people this they think I am crazy because she does not have outdoor/environmental allergies and I have not heard about this on the internet. However they have done studies at this hospital (One of the biggest childrens hospital in the state of Missouri) that shows that these meds do help and they have hundreds of kids on them with great success, meaning there GI tract has healed. She said she will have the biopsy reviewed again by 2 more docs to see what there suggestion is.

I guess the only thing I don’t understand is wouldn’t the GI tract heal even faster with a gluten free diet, what else could possible leave that much damage when I have only trialed dairy twice?

Also is anyone on digestive enzymes?? I want to continue with her probiotic and include these but I have no idea which ones to use!! Thanks in advance

What do you guys think???????

[Anonymous]

Brandy,

That’s very interesting about the allergy medication healing the intestinal tract. I hope it works for her. Maybe your experience will help other babies one day.

Sorry, I don’t have any advice or insight…just wanted to wish you and Emma my best.

[Anonymous]

Hi Brandy,
Papaya enzymes are supposedly really good for the GI tract. You can get those in the health food store. Our OT says she knows a baby on those. I’ve heard you can even use papaya nectar (like Kearns I guess) which contains a lot of enzymes.

[Anonymous]

i don’t know of anything else that can damage the small intestine. i know that emma is too young for the blood tests to be accurate, though. sylvia is almost 3, and our ped gi says she is still too young for the tests to be accurate. the biopsy is supposed to be the “gold standard” to diagnose celiac. from all the info i have read, celiac can be difficult to diagnose sometimes.

i’ve never heard of the allergy meds to heal the digestive tract, theory—– will they do a follow up endo with biopsies to see if it is really working for her?

if she doesn’t improve with the allergy meds, you can always give a gluten free diet a try for several months and see if she has any improvement. i have heard of some celiac patients that have had negative blood work but had positive biopsies.

i wish i could tell you something more that would be helpful.

[Anonymous]

We used probiotics and aloe juice to help heal dd. Trust your gut with this one, it is difficult to diagnose and intolerence that can be irritating her. I have multiple protein intolerences that took me years to figure out. Food avoidence is the key. I hope that you do get some answers, just so you have the satisfaction of knowing something instead of playing the guessing game. Best of luck cutting out the gluten. I love rice noodles and there are alot of gluten free products at the health food store.

[Anonymous]

Hi Brandy,

Did they find eosinophils during the biopsy? A lot of kids being treated for EE or Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID) are put on Singulair or other allergy meds, to heal digestive problems. There is a good site here for more info, if it’s applicable: http://www.apfed.org/

Hope that’s helpful,

[Anonymous]

Thanks everyone!!! I appreciate it.

Christine ~ I hear you on the blood tests, everything I have read to states they are not necessarily accurate at this age and I brought that up to my GI and they don’t know what to think about that. Overall Emma is a very happy baby and is gaining weight just fine and that is really throwing them off. Have you heard of or are your kids gaining weight fine with celiac?

She didn’t say anything about a follow-up biopsy but I can request one. I am going to try this med and if it don’t work as well as they say it does they only thing left to take out of her diet before eliminating gluten is corn, which is in her Alimentum, if that’s not it then I will remove gluten.

Julie ~ Thanks for the website. I don’t think they found EOS cells during her biopsy, she didn’t say anything, but that is one question that I have when I talk to her this week. Its good to know others are treating digestive problems with allergy meds. I just hope it works. What symptoms did your little one have when you found she was intolerant to wheat/corn/other grains??

[Anonymous]

some kids gain weight fine with celiac. there is such a wide range of symptoms.

[Anonymous]

What symptoms did your little one have when you found she was intolerant to wheat/corn/other grains??

Her symptoms have been a little different for each…with wheat and oats, she has stomach cramping and mucus in her stools; for millet and quinoa, it took a while, but she eventually reacted with excema in her diaper area and on her back – no GI symptoms, though; with corn she gets a little nasty and gets a rash on her face – no obvious GI symptoms, though. She reacted to rice with excema one trial, and with increased refluxing on a subsequent trial. We haven’t tried any other grains yet. We don’t know if Sharon is celiac or not — she was negative on the TTG blood test, but we had eliminated any gluten from her diet for 8+ mos before the test, which makes the test invalid. Also, she has very low IgA, which makes the TTG test invalid as well. So, on the advice of our ped, we just steer clear of all gluten, and all grains until we start getting some successful trials. We don’t want to do a biopsy to test for celiac, as we’d need to load her system with gluten for 2-3 mos prior to record the damage for the biopsy.

[Anonymous]

Thanks guys!! I just wish there were distinct symptoms to all this. Its enough to make you go crazy, especially Emma’s sypmtoms. She has gas & bloating all the time and diarrhea with mucous some times and damage to her small bowel, that can be a million things. Everytime I think I have it figured out and we have a action plan something changes. I want to take her off the Alimentum just in case the corn is bothering her but she does not have a good diet and I don’t know what else I can give her except Elecare or Neocate which is so expensive, I guess whatever it takes to get her healthy. Do you guys have your kids on digestive enzymes??

[Anonymous]

http://en.wikipedia.org/wiki/Bacterial_overgrowth

Here’s the way I understand it: Reflux Meds change the PH of you stomach acid, so the environment is not suitable for “good bacteria” to grow, therefor making BAD bacteria grow rampant. The bad bacteria overtime can wreak havoc on the small intestine. I have read that it can damage the hairs (or whatever they are called) that help absorb nutrients and it makes the small intestine look like that of someone with celiac or chron’s disease (smooth). I think that the PPIs are a good thing, but I think you need a LOT of pro-biotics to keep your small intestine happy.

My son has a yogurt drink twice a day as well as a cup of trix yogurt. He had dark green stools from age 2-3 years old and stopped eating meat. I knew there must be something up with the digestion. He does better, the more pro-biotics I give him (with three servings of yogurt a day – no more dark green stools!). Once I added extra pro-biotic powder into his yogurt and he actually ate a hamburger that night!! Then he didn’t like the powder – I haven’t tried dissolving it in juice, but I should try it. It’s just that the pro-biotics can get pricey and I have to take them myself. Also, wanted to add that your immune system is comprimised if you don’t have the right balance of bacteria in your small intestine also. I bet it’a already on Marci-Kids list of things to study if they haven’t done so already.

“Proton pump inhibitor medications that decrease acid in the stomach cause bacterial overgrowth, “

[Anonymous]

julie—one of my kids is IgA deficient. we had to have some specialized testing and gene testing done through promethius lab in california to see if he had celiac disease. i’m not sure at what age that the regular blood tests are supposed to become more accurate—but sylvia is 3 next week and the doc says she is still too young for the tests to be accurate. she was tested last december, but she has some problems with her teeth that have me a little concerned that she may also have celiac disease, so we considered re-testing her. we are participating in a celiac study, so i will know who in our family is genetically susceptible—but it might be a few months before i know.

[Anonymous]

christine, I’ve heard about the tests done there. Very interesting. I imagine the celiac study results will be really helpful to you. Since Sharon is intolerant of any grains and rice right now (not just those with gluten), I don’t know how likely she is to be celiac or if she just needs to develop more to handle any of these foods (she also can’t handle most fruits or dairy or soy). That test has been in the back of my mind to check out, though, so thanks very much.

[Anonymous]

julie—-i really hope she is just intolerant—-celiac is not nearly as hard as ithought it would be—-but i’d still rather that my kids didn’t have it!

[Anonymous]

Christine ~ I have thought about doing stool samples through enterolab. Is promethius lab the same or any better?? Did you ever have sylvia tested through the lab?

That is awesome that you guys are doing the study!!!

[Author]

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