Blood Test Question Re:diet

[Team Young]

My son is on a gluten free diet and shows all the signs of Celiac. We are unwilling at this point to put him back on gluten for 3 mths to do a biopsy. He is 3 1/2. Our current diet is working for him and he is doing great.

His sister is 2 and has shown some signs of wheat intolerance just in the last few months. (Constipation, similar signs that her brother had before his symptoms got really severe). I took her off wheat and in 6 days her stools were soft again.

Our doctors are recommending we do a blood test on her b/c she should ideally still have gluten in her system. They are recommending putting her back on wheat for 2-4 weeks and then doing the celiac blood work up.

Here are my questions:

How much gluten do you need to have in your system daily in order for the blood work to be accurate? I feel like she did not have a large amount. Just grape nuts for breakfast and spelt bread for lunch.

How long...weeks do you need to be on gluten in order for the blood work to be accurate? I feel like no one knows the answer to this! The doctors are saying a month more for her.

Doesn't it make sense that if she is showing signs(constipation) then their should be enough gluten in her system to have an accurate blood work done?

I think my struggle as a mom is if she gets constipated and uncomfortable how long to let her endure that way. I want to get an accurate test done but certainly not at the expense of my daughter's comfort.

Thanks for your help.

[Nic]

I believe I asked this question myself once because I was having myself tested because my son and father both have Celiac and I have some stomach issues. I am gluten light because we eat mostly gluten free at home except for my lunch I eat at work. I was told that being gluten light can lead to a false negative on the blood work. I did test negative by the way. On the other hand, my son who tested positive was still showing a positive result 3 months after being gluten free.

Nicole

[Nic]

Sorry, accidentally posted twice.

[girlfromclare]

It is my experience (though Im no expert - others on this board are much more experienced than me) that blood work in very young children is rarely accurate. If you get a positive result from blood tests in a child under 5 or in anyone actually, then there is no doubt that they have celiac however negative blood results, esp in children, dont always mean anything. It is hard to detect despite what some doctors say, My son had all the symptoms, behavioural and severe mood swings, no weight gain, pale skin, low immune system (not fighting anything) and problems with dairy products i.e. vomiting etc. He had negative blood results and i personally didnt want to put him through a biopsy as he is only five. I spoke to the celiac specialist who said its up to me and that if he was really reacting well to the diet, id have my answer. months on and he is gaining weight, he is healthier looking, he is happier and all round our lives have changed as a result. I suppose what im saying is that its a personal thing. If your children react well to the diet then perhaps that is all you need... although tests are always a good thing as they can rule out other problems too. I recommend you talk to a celiac specialist about this. other posters will be able to tell you how long you need to be on gluten for signs to show. some people say months! I wish you luck with whatever you decide and dont worry as all the mothers and fathers on this site have been through this particular dilemma

good luck

liz ireland

[celiacgirls]

I would do the blood test now because it might end up positive and then you (and others) would know for sure. I would give her as much wheat as you/she were comfortable with until you did the test just to increase the chances of it being positive if there is a problem.

Then, because you know she is more comfortable gluten free, I would just have her follow the gluten-free diet and act as though she did have celiac.

My younger daughter showed signs of gluten intolerance/celiac her whole life. Her blood tests were always negative so I didn't do the strict gluten-free diet for her. When she was 8, we started being very strict with the gluten-free diet and she doesn't have GI issues any more. I wish I had known enough before then to insist on the strict diet.

I started her sister on the gluten-free diet without getting the blood test and know by dietary response that it is right for her, too. I haven't really had any problems so far with her doctors, teachers, relatives, etc., but having a positive blood test would just make the whole thing seem more legitimate to others.

[Juliet]

I asked this question to Dr. Michelle Pietzak a little over a year ago. She told me at the time that an adult would need to consume two pieces of wheat bread, or equivalent amount of gluten, every day for 2 months. For a smaller child, about half of that. If you've been gluten free for only a month, the test may still not be accurate - if the damage was just beginning the antibody reaction may have already gone back to normal, even if the small intestine hasn't yet. Often the people who have high numbers after being gluten free for 3 or 6 months had very, very high numbers before starting the diet. My son had a number over 150 in one area (I think TTg but I can't remember with any certainty) and it took him 6 months to go down to normal. He was also REALLY sick, at a point where he was more or less starving to death. I know others had even higher numbers with little visible symptoms, too, so this disease varies greatly.

[bchapa]

Hello Team Young,

I have asked this same question on this board. My son is 16 moths old and suffers from all of the common celiac symptoms. He has responded very well to a gluten free diet. The one consistent answer I have gotten regarding blood work is a negative test means nothing. We had a negative test and will test again in two months after we re-introduce him to gluten. I