Search Results for 'celiac'

[Anonymous]

my daughter was 14 when her procedure was done—i think that is why he let me stay in. when her twin sister had it done a couple of months before i didn’t ask about staying in, but they had me go in with her and stay until they were ready to do the scope. i don’t think they let parents in with very young children. i THINK they said it is because the little ones get too upset if the parents are there. when sylvia went in to have her fundo done they let me carry her to the surgery doors, but that was all. i asked the doc how she did and he said they are usually fine when they get them back there. if they give them versed beforehand it really helps to calm them.

i have had a scope and 3 of my girls have had one, also. i think that the surgeon that did mine put me under more deep than the ped gi put the girls under—but they didn’t remember anything.

kevieb2007-09-26 23:47:28

[Anonymous]

they won’t let us be in the room with her… they escort us out before they give her anesthesia and will let us back in when she comes around after the procedure is done. they didn’t give you or you dd anesthesia?

[Anonymous]

emi’s mommy—–it is impossible to diagnose celiac disease with a barium x-ray—-they don’t even diagnose it visually with an endoscopy—-they diagnose it with biopsies, microscopically, when they look at the villi through a microscope to see if it is blunted. i also think it is impossible for a barium x-ray to diagnose improper absorption—-i think that has to be done with stool tests. i know it is hard, but i would try not to get too worried about what you have been told about the barium x-ray, yet.

[Anonymous]

i thought i’d let you gals know that the endo is no big deal. our ped gi let me stay in during the procedure when one of my twins had it done. he had me stand right next to him and hold her hands so that she would not try and put them up to her face. i found it really interesting to watch the whole thing. none of my kids remembers a thing about having their endoscopies done. i had one last october and i don’t remember a thing about it. i was so worried i would be aware of them putting that thing down my throat. i was out driving later that day.

[Anonymous]

and thank you amy for you suggestion! i posted in the Celiac section and she messaged me.

emi’s paternal grandmother has I.B.D. and her side of the fam is riddled with food allergies and intestinal probs, mostly Large bowel though, which is discouraging.

i thought I.B. problems was an older person thing i didn’t know until recently that babies and children get it too! i keeping my fingers crossed that it is celiac and nothing worse!

[Anonymous]

thats what i hear too, i am just worried b/c i can’t be in there with her! but it’s only a half an hour and if it will get her better i am willing to sacrifice … but i will definitely let you know how it goes!

[Anonymous]

yes i have thought about just keeping her on nutramigen, she is doing so well on it and has gained so much weight.

i am almost inclined to believe it is Celiac
b/c once i switched from BF she did immediately better, (gluten was the only thing I did not eliminate from my diet) if it was something else wouldn’t she have trouble gaining weight?

i don’t know, we have her reflux in check and now this! i’m biting my nails until we get this endoscopy and praying its not something more serious like her SI dying or something!

[Anonymous]

Now, if I remember correctly, Owen had a biopsy done with his that showed inflammation in the intestines and he was severely undernourished because of the MSPI, they never mentioned anything about celiac??

Have you thougth of going the route of formula only Nutramagin until a year and forgoing solids?

I do know of a local family and the dad had been having problems for years and never knew what it was and was dx’d at age 35 and then tested the whole family and his 8 year old also has it. Are they going to test any family? Do you know of anyone with like IBS or anything that may be misdiagnosed??? Sometimes bowel issues are kept hidden at times, not something you want to bring up in conversation?

[Anonymous]

Gosh, I bet that was overwhelming to hear! I don’t know anything about celiac, but I would suggest sending a private message to “kevieb”. A few of her children have celiac and she is very knowledgeable on the subject. Good luck and i hope you find out what you need!!!!

[Anonymous]

ohh please let me know how the endoscopy goes..and the results..and what you learn and so on. ours is the 12th..

g’luck with it!! i hear its easy and overwith fast!

[Anonymous]

I recently posted that my daughter had a GI and a Small Bowel Follow Through. The test went through fine and just this week the GI called us in for the results, She had whole sections and patches of her Small Intestine inflamed and displaying improper absorption. I was blindsided when he said that it looked like she “might” have Celiac Disease.

From what I have researched Celiac is genetic, although the gene can be dormant, it’s not very common to have it without someone in the immediate family having it as well.

They are doing a Endoscopy to find out for sure (since it is really hard to diagnose Celiac through Barium X-ray)

So my question is: Could the inflammation they saw in the intestines be linked at all with Acid Reflux? Are there any other things that could have cause her small intestines to become inflamed?

[Anonymous]

thanks! we will know for sure on after Oct 2nd (the date of the endoscopy!)

[Anonymous]

i think it is great that you have a GI that is being so careful in his testing. let me know how your tests come out. if you have to go gluten free i’ll give you any help you need.

there are some good books out there for gluten free cooking. i have even made sweet rolls and fruit danish that turned out really good. we make muffins and pancakes all the time. we have had to change a few brands and it is more expensive, but it is very doable. good luck!!

[Anonymous]

thanks for the quick responses! the Upper Gi and the Small bowel follow through went fine, a couple instances of spitting up the barium and she hated being held down to do the xrays but other then that the test went through okay

the GI said he got some good pics showing reflux up to 2 hours after start of test. we were there for a little over 2 and a half hours.

when he called me in to the office to discuss the rest of the test, he said it took so long b/c the formula had trouble moving through the small intestine. he said it looked like to him that the barium was not being evenly absorbed, there were whole sections and patches along her SI that was not absorbing nutrients properly and looked inflamed. He said this display is associated most commonly with how celiac affects the SI.

He won’t rule anything else out though, but he suspects it is celiac. He thinks it was triggered through my nursing her, her SI never healed all the way and when i fed her oatmeal (possibly gluten contaminated) and wheat teether cookies, it started an even worse reaction. thus this is the reason why she can not tolerate other solid foods b/c there has not been enough healing time. it might even explain the painful BM’s she has too (posted in the gastro section)

[Anonymous]

i have 3 kids with celiac disease. i don’t know how they could see signs of celiac disease with an upper gi and small bowel follow through since they can’t see the villi when they do that test, is there something going on besides reflux that makes them suspect celiac disease? there is a blood test for celiac disease, but it is not particularly accurate in very young children.

celiac disease is a genetic, autoimmune disease. when a celiac eats gluten—even a crumb—-their body turns on itself and destroys the villi in the small intestine. i had several meltdowns when my girls were first diagnosed. one night, kassie made some gluten-free bread that was really good—-and i quit crying. a gluten free diet is really not that difficult, but it can be very inconvenient at times. we eat almost the same things we ate before diagnosis, we just use different ingredients.

gluten is in wheat, barley, rye, triticale, spelt. most commercial oats are cross-contaminated. i buy guaranteed gluten-free oats for my girls, but they are not cheap.

neither my husband nor i have celiac disease and as far as we know, no one in either of our families has ever been diagnosed with it—–this kind of came out of nowhere for us. we know that one of our other children has the gene, but no active disease at this time.

kevieb2007-09-18 21:37:17