Confused About Gluten Challenge Etc.

[katiekay]

The doctor had my daughter tested for celiacs even though she had been pretty much gluten free for the 10 days previous to test. There had been a few bites here and there of gluten but not much. I'm hearing about gluten challenge being needed b4 test. Also my daughter is 18 months old. Was it worthless to even do blood test at that point???

[mushroom]

Testing with children is very unreliable, both the blood tests and the endoscopy, so it is always going to be a bit of a crapshoot. Add in a basically gluten free period and it does lessen the chances of an accurate result.

You have mentioned a failure to thrive and this is very typical of celiac disease. Once you have completed all the testing with the doctor, do give her a strict trial on the gluten free diet because she certainly sounds to be gluten intolerant. If after three months you notice no difference, reintroduce it and see how she reacts. That will be more telling than any of the testing.

[katiekay]

I think you are right!!! We should get the test results back on Monday. If no positive results on the blood test but she still hasn't gained any weight after this week of eating wheat (as my husband wants) than I'm going to put her on a gluten free diet and see if she starts gaining weight. It has been 9 months of no gain so if she suddenly starts gaining weight that should convince my husband more than any test. Although he'll probably surprise me.

thank you for writing... This has really clicked for me as a good idea.

[katiekay]

ohhhh and do you know what else can typically cause failure to thrive??? It's been 9 months with no weight gain.

[mushroom]

"Failure to thrive is a diagnosis given to children who are consistently underweight or who do not gain weight for unclear reasons. There are many causes. Most causes involve environmental and social factors that interact to keep the child from getting the nutrition the child needs. Occasionally, medical disorders prevent a child from growing normally." This is from the Merck Manual.

[ravenwoodglass]

I think you are right!!! We should get the test results back on Monday. If no positive results on the blood test but she still hasn't gained any weight after this week of eating wheat (as my husband wants) than I'm going to put her on a gluten free diet and see if she starts gaining weight. It has been 9 months of no gain so if she suddenly starts gaining weight that should convince my husband more than any test. Although he'll probably surprise me.

thank you for writing... This has really clicked for me as a good idea.

I think you have a good plan there. Young children do have an even higher rate of false negatives than adults do. It isn't going to hurt to try the diet strictly for at least a couple of months. Since celiac can also effect the brain and ability to learn and mood you may also find less temper tantrums and fussiness after she has been on the diet for a bit. Since you have increased the wheat intake greatly little one may be a bit moodier than usual this week. And the same may apply when you first go to gluten free. Read as much as you can to learn how to keep your little safe.

[katiekay]

thank you both!

[JenHarris]

Does your daughter have any other issues besides failure to thrive? Does she have frequent lung problems or get sick with head colds a lot? Does she have any known vitamin deficiencies?

[katiekay]

I don't think she has any of that. She suddenly developed trouble with wetting the bed after I had increased wheat in our diet (english muffins and pb&j sandwiches). That's what first tipped me off to wheat. Than the failure to thrive and the doctor decided to test her for celiacs. I notice as we go on and off wheat that she is having sleep issues. Tonight we are both having stomach issues after 4 days being back on wheat.

I have another question... tonight she seems to be having bad cramps (and so am I) and wimpering. The wierd thing is the only thing she ate was spareribs... I'm thinking if she's reacting to wheat maybe it's the bbq sauce? And her grandfather gave her ice cream in an icecream cone.... OH DUH... THOSE MUST HAVE WHEAT??? For me all I ate was mashed potatoes, carros, and broccoli with vinegar. I think the mashed potatoes were made with butter so I'm thinking maybe lactose problem???? oh and I ate a couple bites of her cone without ice cream. so confused because we are both having such a strong reaction and not as much wheat as we have been eating the past 4 days. Does body start getting overwhelmed?

[mushroom]

so confused because we are both having such a strong reaction and not as much wheat as we have been eating the past 4 days. Does body start getting overwhelmed?

I often use the analogy that the anti-gliadin guards go off duty when the gluten is withdrawn, and then come back madder than h*ll at being called back from vacation to deal with that pesky gluten AGAIN!! just when they thought they got rid of it Yes, the reaction is often stronger after you have been gluten free for a while.

[Smarts]

I have another question... tonight she seems to be having bad cramps (and so am I) and wimpering. The wierd thing is the only thing she ate was spareribs... I'm thinking if she's reacting to wheat maybe it's the bbq sauce? And her grandfather gave her ice cream in an icecream cone.... OH DUH... THOSE MUST HAVE WHEAT??? For me all I ate was mashed potatoes, carros, and broccoli with vinegar. I think the mashed potatoes were made with butter so I'm thinking maybe lactose problem???? oh and I ate a couple bites of her cone without ice cream. so confused because we are both having such a strong reaction and not as much wheat as we have been eating the past 4 days. Does body start getting overwhelmed?

I know this does get confusing. If it wasn't for my 10 yr old daughter reacting to gluten too, I'd think I'd made it all up in my head. Anyway, absolutely ice cream cones are a no no, and believe it or not, they put wheat in some ice creams!! Also what type of vinegar did you use? Malt vinegar is a problem too. I'm becoming a bit of a super sleuth, going to Google if I'm not sure of something - manufacturers often put more information up on their websites about their products than are on the packaging. I found some, like Cadbury's, have a special page devoted to gluten intolerance. Last month I found my daughter in the bathroom sobbing in the foetal position, gripping her tummy. Her tummy hurt so bad and she had a rash all over her tummy and arms that was itching like hell. The only thing she had eaten unusual that day was a Chupa Chup lolly pop but I was sure they were okay. The next day, really confused, I looked on Google and found out that only one flavour - Coca Cola (the flavour she had) contains gluten and all the rest are fine. For the rest of the week my poor little girl complained of nasty mouth ulcers

[katiekay]

thank you both!! can't believe this.