Search Results for 'celiac'

[Anonymous]

my son is thought to have it as well.. we are having an endoscopy done next month to confirm it.

all i know is that if its shows up positive they will have to obstain from gluten which is the protien i believe in grains..wheat.. barley..and a couple others.

and the intolerance to the gluten can damage their intestinal tract and keep them from absorbing nutrients properly.

(anyone correct me if i am wrong).

it is also a genetic disease.. that is passed down from someone carrying the gene. the person may carry the gene and not even know it!

well thats about all i have for you…i am sure other moms can inform you a bit more..

i hope it shows up negative! let us know how it goes!

[Anonymous]

I don’t really know too much about Celiac disease but just wanted to see how the upper gi went. Big hugs! isaacsmom6182007-09-18 09:08:12

[Anonymous]

My 7 month old daughter had an upper Gi and small bowel follow through, definite reflux was detected and signs of Celiac disease were thought to be present. We are having an endoscopy done really soon, but i just want more information on celiac so i know how to better prepare for life with it. Anything, anything would be very helpful.

[Anonymous]

thanks i’ll check it out.

and naomi i hope your right! i’ll keep it it mind this whole LONNNGGG month until his test! 😉 thanks again.

[hellbennt]

there’s a link form ‘mspi what I’ve learned & allergy info’

about ‘misdiagnoses’

this is a post about malabsorbtion…

[Anonymous]

Lauren, just another word on the poop! Ben also has whitish chunks in his poo at times, but again, I really think it’s just because he doesn’t wholly chew his food. I see avocado as whitish chunks and sometimes green beans (or at least the bean inside the bean, you know?).

[Anonymous]

i think when a person has malabsorption from celiac that it makes greasy bowel movements.—-i’m not sure how you could get white chunks of fat in poop unless you were eating white chunks of fat. my guess is that the white chunks are something else—-but i really don’t know. there are alot of different things that can cause malabsorption and it is important to know the cause, because the treatment is different depending on the cause. i don’t think that chunks of undigested food necessarily indicate malabsorption, i think that they would more likely indicate a digestion problem or just that food was not chewed well.

almost all of my kids have been really small. i don’t know how long the girls have had celiac,but i wonder if it might have been picked up sooner if all of my kids weren’t so small. molly has looked fragile for years, but she always seemed tough as nails, so i wasn’t that concerned. i used to tell kevin she looked like she would break because her wrists were so thin.

the twins were preemies and have always been small. i don’t think that my kids had reached the point of being malnourished when they were diagnosed—-well, tianna reached a point of being malnourished, but that was because of her eating disorder, not because of the celiac disease.

if your allergist ran 5 tests i am willing to bet that they ran all the right tests. the NHA (?) has launched a celiac awareness campaign to get the word out to doctors, so i think that more and more docs are getting the current celiac info and running the newer, more accurate tests—–and i think that 5 is the number of tests that are included in a full celiac panel—but a couple of them are not particularly accurate for diagnosing celiac. i am willing to bet that the positive on your son’s test was the antigliadin antibody test. if so, you probably don’t need to get too worried yet since there are a number of different things that can raise AGA levels—-including constipation. i think it is really great that the allergist tested for celiac and that they recommended a biopsy—–i think that there are still alot of docs that are uniformed about celiac because it was so misunderstood in the past. they say that a biopsy is the “gold standard” for diagnosing celiac, but i also know that a biopsy can miss celiac because the damage can be spotty and the scope can only get into about 6 feet of the intestine—–that leaves alot of unseen area. if the tests all come out negative, you might keep celiac in the back of your mind and if you don’t see any improvement over time, you could ask to have him retested when he gets older.

we will continue to test our entire family periodically for the rest of their lives because we don’t know who is genetically susceptible and the disease can be activated at any time if you carry the gene. our son that has the gene needs to be tested yearly———or sooner, if he develops symptoms.

[Anonymous]

Our doctor told us that he pale whitish chunks are fat, and that it could be a sign of fat malabsorption.

I’m sorry I missed this and sorry to hear about the celiac. Hopefully the scop ewill give you more answers.

[Anonymous]

hi christine. ..

i have no clue what test they did! all i thought we were doing was drawing blood for any allergies. she called and said no more allergies.. but one out of the five “peramiters” (i think that was the word) came out positive for celiac. …and that we would have to do a biopsy to further verify it. …

also.. what in the world does pale bowel movements that floated..mean in a diaper!?? haha… i cant imagine it! but he does get pale/whitishy yellow chunks in his diaper a lot…and i have no clue what they are. would that be it???!

and.. did your celiac kids have a hard time growing also? did they seem really malnurished?? i am really scared that shane is malnurished and i dont know it!

shanesmom2007-09-06 22:51:06

[Anonymous]

lauren, which test came out positive? a Ttg test is the most accurate blood test for celiac—but alot of young children don’t start producint Ttg antibodies until they are over 3 years old—so celiac blood testing is not particularly accurate in really young children. did they do a total IgA serum level? if a child is IgA deficient the celiac tests will not tell you anything because the tests are usually IgA based. one of my kids is IgA deficient and we had to do some specialized testing to know whether of not he had celiac. we learned he has the gene for celiac, but no active disease.

there is a really wide range of symptoms that can be caused by celiac disease. all three of my girls had different symptoms. it used to be thought that it was a rare, childhood disease and the “classic” symptoms were failure to thrive, diahrrea, a distended belly and large, pale bowel movements that floated and smelled pretty bad. now they know it is not something you outgrow, that it is NOT rare, and that it can cause many symptoms beyond the “classic” symptoms.

some people with celiac will have a lactose intolerance that is caused by damage to the villi and once the intestines heal, the lactose intolerance goes away.

beth is right about the reason for staying on gluten until after all testing is done. if a celiac is staying gluten free, their blood work should look totally normal.

[Anonymous]

hi claire..

i am wondering some of the same things too! i dont know what that means that one of the “peramiters” i think she said.. came out positive. I am hoping someone can help me. And yes usually celiacs have a tough time growing.. the gluten keeps their body from absorbing all their nutrients (someone correct me if i am wrong). I guess they are going to take a biopsy to confirm it. So..there is still chance that he isnt. And yes, this is how they found out he had it.. by his BLOOD allergy testing. He isnt allergic to wheat.. but they also tested him for celiac and that is what showed up (this was 2 weeks ago, not when he did the prick test).

But as for his poo.. it could be normal i guess as well.. i have NEVER seen it in all the other children i have changed.. but since you say Ben has it …it makes me feel better ;)… sorry if it makes you feel worse! I dont think Ben has it.. he looks pudgy in his pick 😉 .. did he ever fall on his growth charts? Shane fell from 90th to 50th and then to 20th like over night.. i was never really tooo concerned. .. but they seem to just think it fits the symptoms. Hopefully this is just another “scare” and he doesnt have it! I will let you guys know what happens.. oct 12th is his endoscopy.. and if anyone has any other answers or info i would love to learn more! thanks !!

[Anonymous]

Lauren! I don’t have any advice either, as we haven’t done the endoscopy ourselves, but I just wanted to send some warm thoughts and wishes your way. Does testing postive for one of the five tests mean that he is likely to have it? Do you have to test positive for all??? I don’t know much about it at all. Do celiacs generally have trouble gaining weight? Also, this is maybe a dumb question, but would this have shown up at all when they did allergy testing on him? Didn’t they check for wheat or gluten allergies??

Anyway, what is “malabsorbed poo.” I’m pretty curious because I’ve seen Ben’s food come out nearly whole on the other end! Bean, blueberries, you name it. I think it’s just because he doesn’t have many teeth and can’t really chew his food, but your post has me wondering!!!

[Anonymous]

thanks heather..you know exactly how i am feeling 😉

and thanks kathy for your help.. i am feeling a little more relaxed by it.. and excited to get it over with!

[Anonymous]

Hi Lauren,

Poor Shane! It will be good to figure out what’s bothering him, but I can imagine how stressful it’s going to figure out a diet that is milk soy and gluten free. Yikes! But if that’s what it takes to get Shane to have a comfortable nights sleep, I’m sure you are ready to do whatever it takes.

As for the endoscopy, it really was a simple procedure. I sat and cried the whole time (only 45 minutes) but Gabby seemed to handle it just fine. She was drinking her formula again by that night. My insurance covered it well. I think we only had a $25 co-pay and the procedure was done at the pricey prestigioius children’s hospital. I hope you get the answers you are looking for. Good luck!

Kathy

[Anonymous]

Hi Lauren,
I don’t have any advice, but just wanted to wish you good luck with everything. I hope they can find out if celiac is the problem. Hopefully you’re getting close to the end of your long road to an answer and Shane can finally get feeling well and sleep better.