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Post by hannahph on Sept 12, 2006 9:18:41 GMT -5
Forgot to ask, Donnita, do you understand the blood test numbers??? I have Hannah's lab results and can't figure a darn thing out. I don't know which Dr to believe!!!
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Post by Connie on Sept 12, 2006 14:16:01 GMT -5
The symptoms of celiac are like Heather posted but those are the "TYPICAL" symptoms. You can have "ATYPICAL" symptoms such at constipation and behavior issues and still have Celiac Disease. Connie
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Post by Kristin on Sept 12, 2006 22:25:19 GMT -5
I had Clarice screened because of no height or weight gain from ages 2 1/2 to 4. She had chronic (liquid) diarrhea, exema, hyperactivity...When they did the screen they found elevated IgA for gluten, which is one of three markers they look at. Removing gluten helped, but didn't "cure" her. We finally had an endoscopy done (after I had charted the lack of height and weight gain to convince them something was amiss.). To do an accurate test, the child needs to be on gluten for 3-6 weeks. The endoscopy revealed some lower intestinal autoimmune disease, not celiac. (But she was on a gluten-free diet at the time. The Dr. and I didn't want to take her off of it because it made her so sick.) The Dr., a gastroenterologist, said that a more accurate screen could be done when she gets older. After further testing we made some big changes including no gluten, eggs, or dairy. I can tell you that she has no red cheeks, exema, less hyperactivity, and fewer tantrums. She is back on the DS growth and weight charts that she had fallen off of. There are some newer screens (genetic ones) that are becoming available.
I guess one of my points, is that if you have to go to a gluten-free diet, it is truly worth it. The damage done by celiac and other autoimmune diseases is permanent. Although the flattened villi will heal if gluten is removed, the more often gluten is present, the more damaged and difficult it will become to heal. Studies show that many people have celiac and don't even realize it. They have learned to live with the discomfort and avoid foods that bother them. The bad news is that they are more prone to stomach cancer.
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Post by donnita on Sept 13, 2006 19:11:23 GMT -5
Heather, I haven't heard the numbers, just that the screen was "positive". The next test (that still hasn't been scheduled yet) involves sticking a scope down her throat to collect samples from her stomach. Ick!
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Post by momofrussell on Sept 13, 2006 20:03:54 GMT -5
Even though they are doing the scope to collect samples for testing for Celiac's.. would that still be considered an endoscopy? I wonder when Russell had his done years ago would they have done that along with the other stuff, kinda like a "while we are there" kinda thing? I know.. retorical at best... just thinking out loud again A.
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Post by Connie on Sept 13, 2006 20:18:37 GMT -5
Donnita, I thought the scope went in the other end?!?! I thought it was the linning of the small and large intestine that was the problem, not the stomache. I may be completely confused which would not be the first time....the rest of you hush!!! No comments needed....LOL Connie
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Post by Emilysmom on Sept 13, 2006 21:14:52 GMT -5
Connie, Best route to the stomach would be through the mouth. Best route to the intestines is at the other end. I've had both tested and was really glad for whatever that stuff was they put in my IV.
Susan
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Post by hannahph on Sept 14, 2006 8:38:23 GMT -5
It is my understanding that they would do a biopsy through an endoscope through the stomach into the small intestine. At least that is what we were considering for Hannah. A-I don't believe they would have done a biopsy "while they were in there" BUT if he had damage to the villi in his intestine they would have more than likely seen that. If there are no symptoms you are concerned with then it is usually ok to just do a blood screen every few years like maybe at the same time as another test like yearly CBC and thyroid tests.
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Post by momofrussell on Sept 14, 2006 8:58:40 GMT -5
Ok.. thanks Heather... I would have remembered if they said "damage to the villi" or anything close to that.. heck, he only had minimal scaring in the esophogus so we were good to go with the scope. Since he has never had the screening maybe I will just try to remember to mention it the next time we do blood work Connie.. I always thought the biopsy was done from the bottom end too But I don't know much about this Celiac's stuff A.
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Post by alisonzmom on Sept 14, 2006 13:56:43 GMT -5
Don't know if Alison's ped is just a little on the overly cautious side as far as a number of the screenings go or not. Since she turned 2, he has ordered a CBC & the Celiac screen every 6 months along with her thyroid studies. She does have thyroid problems ( hypothyroidism ) so those tests would be done anyway but all the other stuff has been well with in normal limits each time. I thought that Celiac screening was recommended at 3 yrs old as kind of a routine thing for kids w/DS.... not sure where I got that idea though........
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Post by momofrussell on Sept 14, 2006 14:05:35 GMT -5
Barb, I do think there is a list or guidelines for tests/screenings for our children w/DS.. I don't know specifically what it says for Celiacs but it's on there. You mean we are suppose to follow those things? LMAO A.
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Post by Chester on Sept 14, 2006 14:10:55 GMT -5
I'm glad this thread was started. My oldest son (non-ds) has always had "issues". I took him to the Dr. today to ask if she thought it would be appropriate for him to be screened for Celiac. She said yes, but also wanted to x-ray his belly. Turns out that even though he's had soft stools for ever, that he is very constipated and that his intestines are all misshaped now. The soft stools are from having to go around the block.
I felt so bad for Cory, that he's been like this FOREVER! This has been something we've been dealing with since we adopted him at age 1. I never ever would have guessed he was consitpated, guess the Dr's didn't either. Sigh.
We also did the Celiac screen, blood work. Won't know anything for a couple of days.
Thanks again! Dawn
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Post by alisonzmom on Sept 14, 2006 14:18:01 GMT -5
Supposed to follow the guidelines? LOL, A.... I don't think I've followed a guideline or a rule most of my life, as I'm sure many a nun could tell ya beginning with Sr. Inocencia who I had in Kindy!!!! Ya know I gave our ped a copy of that guideline list forever ago..... probably at Alison's first ever office visit...... and I gotta love the man, he checks it EVERY single time we're there........ Only problem is I think he's one of those who once he does the test the first time it's recommended he just keeps ordering them with each visit!!! Guess I better get off the stick and double check when and how often some of this stuff is recommended. While she's still little it's not much blood there taking but geesh, before long she'll need to go to the Red Cross to have them draw off a pint to do all the blood work on!!!
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Post by momofrussell on Sept 14, 2006 16:39:08 GMT -5
OK.. so I now have another question... I was searching online for even a gluten free diet list or food list and all I can find are diets and foods to order.. I just want a list or whatnot... anyone got one?
A.
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Post by MatureMomG on Sept 14, 2006 17:07:57 GMT -5
From my limited understanding, Celiac's is an auto-immune dosease. So this would mean that they may not have it at one time, but later get it? And if I am right so far, is there anything that would be preventative? Clue me in, folks! Yours in Christ, Kathy
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