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5 Years - Same Problem

Posted by on Aug. 7, 2010 at 1:57 PM
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My daighter had a slightly elevated blood result for celiacs at the age of 2 1/2......followed by an intestinal biopsy that was NEGATIVE for any damage.

the gastrointerologist said - treat her as a celiac.  My regular physician said predisposition in the blood doesn't mean she has anything......
then the genetics expert said those blood tests are highly inaccuarte on their own.....let her eat whatever she wants.

so after being gluten free for years......last summer we went back to regular food.  She did great - till about three weeks in- when we noticed lots more trips to the bathroom and lots of full feelings.  Not sure what that really meant........if she were a true celiac i would imagine her 'bad' reaction would have been more immediate like in the first few days and not have taken 3 weeks to present.

So here we are now - she is still barely in the 3% for her height and weight.......so no improvement with growth being gluten free (we went straight back to gluten free after those three weeks).

i guess we have to go back to the gastrinterologist - who we havent seen in 5 years now (daughter is now 7 1/2)  Don't  know if the poor kid is a celiac and stuck on this diet for life, or if we are on it for no real reason (which would suck!).....

ahe also has a tic condition.....which we thought came from going back on gluten......but she's been off for a full year now totally  - and still has the tics!!!!!! and now we're starting to think she has a sensitivity to milk too!!!!!

grrrr.........

anyone else with different opinions from different doctors????????

.

by on Aug. 7, 2010 at 1:57 PM
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Replies (1-4):
happy2bmom0406
by Member on Aug. 9, 2010 at 2:03 PM

My son and I both have Celiac.  Sometimes it takes a week or more to get a reaction when there is an exposure.  A few times I thought "Few I lucked out, no reaction" and then a few days later I am SO SICK!  It can be very delayed.  I am sorry to tell you this too, Celiac patients are more prone to develop food allergies.  My son was tested and he is allergic to EVERYTHING!  My daughter was very small for her age and we had her tested, no Celiac, but LOTS of food allergies.  So three of the six of us in this house have diets.  It sucked so bad at first but it turns out there is LOTS of options out there.  I would get her a complete Food Allergy test.  My kids are doing well on their diets and we have lots of substitutes that make them not feel left out.  My daughter who is small, never really got bigger.  She is growing but she is steadily staying on the lower percentage.  Since she is healthy and happy and her tummy issues have subsided the docs tell me she is alright.  I am so sorry your sweetie is having such a tough time.  I am sorry you have to watch it.  I know how it feels!!!  My heart breaks for my kids but once you get a complete picture of foods to avoid, it gets better.  If you need any tips on foods, I am here!  We have to avoid Gluten, Soy, Dairy, Eggs, Tree Nuts, Peanuts, Sesame Seeds, Corn, Shellfish, and Fish.  I have gotten quite creative!

HEAVNLI1
by on Aug. 11, 2010 at 8:17 PM

I too experienced doubts and went back on a regular diet.  My symptoms did not return until about 2.5 -3 weeks, but sure enough they returned.  You can be gluten intolerant and no have celiac.  Good luck!

happy2bmom0406
by Member on Aug. 11, 2010 at 9:18 PM

This quote is so true!  My doctor said that the best test is if you feel better with the diet.  She said allergy, intolerance, and celiac tests are FAR FROM an exact science.  Sometimes we just have to realize what makes us feel better and go with it.

Quoting HEAVNLI1:

I too experienced doubts and went back on a regular diet.  My symptoms did not return until about 2.5 -3 weeks, but sure enough they returned.  You can be gluten intolerant and no have celiac.  Good luck!

kissing dadbaby in slingteen girl


Thank you God for the Cox Family!!  I am truly BLESSED!!

JustGail
by on Aug. 19, 2010 at 3:40 PM

 i'm just wondering if sometimes after being away from the gluten for a very long time.....if you feel kind of bad at first from it.....just because your body is treating it as a "new" food and needs to get used to it.

anyway - we're making an appointment for a consultation with the gastrointerologist.....ans we're all gonna get the bloodwork done.  (I'm assuming meggie will have to be put back on gluten for a while before they can do her tests.

 

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