Search Results for 'celiac'

[Anonymous]

our ped gi uses prometheus for specialized testing.

i would not use enterolab myself because there are no peer reviewed studies or published papers on dr. fine’s stool testing methods. they may be perfectly legitimate, but i don’t think that most MD’s will recognize his findings as being accurate. if you look at their site and read about all the genes that he feels are conected to gluten intolerance (non-celiac gluten intolerance) the majority of the population would be considered gluten intolerant. that just seems a little strange to me. however, there are a lot of people that swear by enterolab.

[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!!!

[Anonymous]

We had David’s one month check back yesterday after being put on iron and formula (he’s about 1/2 on formula and 1/2 breastfeeding at this point). He did well. His blood work showed improvement and the doctor was pleased.

I am glad too but also confused. His diapers have been terrible since starting iron. They have a ton of mucus and are full of black specks that I can only think must be dried blood (they are also dark green but I know that is normal for being on iron). I told the doctor this but after he saw the improved numbers he said they wouldn’t look so good if it were blood. He also said that being on iron scewed the test numbers so it really didn’t do any good to retest.

I’m glad if it’s not blood, but then what in the world is it? I begin to doubt myself. It doesn’t seem that my observations mean anything. How can he be so anemic because of bleeding in his intestinal tract when his diapers look great with no sign of blood and then how can he be doing so much better with his diapers looking so terrible? I can’t make sence of anything anymore.

His celiac test came back negative but did show low for Immunoglobulin A. Serum. As far as I can tell, it is inconclusive what a low IgA number means. The studies I saw said that low numbers were more prevalent among those tested for CD and those with CD but really all that was conclusive was that kids with intestinal problems tend to have low IgA numbers.

We did skin prick testing at the allergist and all that came up as positive was peanuts. The rest of the major allergens did not show positive. He even tested for breast milk, allimentum and Neocate. We are waiting to hear back on the blood tests. They had to be sent to Primary Children’s.

We are still looking forward to an Apt. with Christine’s GI on the 11th.

Thanks for listening!

Kara

[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’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]

Melissa, Great news for Michael! Now he can eat more foods just like other kiddos his age! I’m glad they caught your daughters celiac. Both my dd’s are wheat sensitive so we spend alot of time shopping at the health food store. They you have those gluten free isles now so it makes it a bit easier on us! Good luck and thanks for posting and update, sometimes it seems like she will never outgrow this let alone sleep through the night!

[Anonymous]

Great news all around for Michael! Sorry to hear about your daughter’s celiac

but it sounds like things are going well in general.

[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]

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]

Melissa,
Congratulations on all those great accomplishments! It’s must be great to have the worst of it behind you with Michael. Good luck with the medicine weaning! I’m sorry to hear about your daughter’s celiac disease though…

[Anonymous]

Hi Everyone,

Lots of great news, we have been busy. 1)Michael has weaned to rice milk 2)Michael is sleeping in a big boy bed and sleeping through the night for the first time in 19 months! 3)Michael is starting to use the potty!!!! 4)Michael has grown out of his soy allergy and is well on his way to growing out of the dairy as well!

So many things have been happening! It is crazy! And believe it or not, all of this was Michael led. He wants to be 4 just like big sister! I was going to try to wean his medicine but my daughter just got diagnosed with Celiac Disease (gluten and wheat “allergy”) so I am feeling much like I did when I first joined this site! But anyway we will try the meds cut back in a couple of weeks and see how it goes!

[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]

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]

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

[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??