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Help, How much testing would/did you do?

My 8yr old daughter has had chronic Gastro problems since birth. Reflux, low wgt gain as an infant, chronic stomach pains, problems with dairy always. Since my mother died with celiac disease, I had blood tests done on my son when he was 4 yrs old and myself both came back negative. My daughter's blood test were done when she was under a year old. Negative as well. (I now have read some things that indicate that they may have been done too early). Basically her problems resolved themselves. Now she has had chronic stomach pain for 3 months or so, no other major symptoms (very little diarhea like maybe 3 times), doctor feels the pain is in the small bowel area. I tried a totally dairy free diet for her with no improvement in symptoms. I thought it was 'nerves' for an special event that was this past weekend. Event is over and no improvement. Today we went to the doctor and she suggested trying a gluten free diet. I feel it is such a strict diet for a child, would you do that first or do blood work, or see a GI doc. (the closest pediatric Gastro doc is 200 miles away) I want to do what is best and am leaning towards gluten-free diet (I am lucky she enjoys eating salads, fruit, veggies and meat, but she also enjoys her pasta and sandwiches.) I am thinking gluten-free diet and then challenge her and if problem see Gastro doctor. Then do blood tests and if warranted biopsy. What would you do?

Thanks, Anne

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First, your daughter was tested too young. Results are not very accurate at that age.

I would ask my regular doctor, not the GI, to take blood and have the celiac panel done BEFORE ever taking your daughter off gluten. Believe me, if you take her off and she improves immensely, it's going to pain both you and her to force her to eat gluten again. A competent lab should know which ones to do, or your doctor should be able to look it up easily. Iga, total Iga, Igg, and Ttg are the four that should be done at a minimum. You do not need a GI for this part.

After getting results you can then decide where to go. Family history, symptoms, and positive blood tests are really enough but some doctors insist on the biopsy and some parents want it as well. An endoscopy can also check if there's anything else going on.

richard

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Richard,

Thanks I am going to call the doctor again today and talk about the blood tests. I think if we do the blood tests then I can go from there. I totally agree with what you said:

Believe me, if you take her off and she improves immensely, it's going to pain both you and her to force her to eat gluten again.

I don't want to subject her to a lifetime of a gluten free diet unless celiac is what she has, but I want her to feel better. So bloodwork is the way to go I think. My mom went undiagnosed most of her life. (Until she had surgery for the cancer in the small bowel) I do not want to be ignorant about it but with clear blood tests on my son and I and then on my daughter when she was little, I thought we were beyond a celiac diagnosis and maybe we are, but it sure feels like something is going on. My son and my tests were done before my daughter was born, I insisted on my sons & mine done without symptoms. Then my daughters when she had symptoms. But now new symptoms AGAIN, but she is glad she can eat ice cream again, since the dairy free diet showed no imporvement.

Again, thanks for your thoughts on this.

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My son was dx at 10, and I just wanted tell you that he is a pasta lover as well -- and has been very happy with the assortment of gluten-free pastas available. No deprivation for him!

I don't know how much apprehension your daughter has about blood draws, but since we are (unfortunately) very experienced in this department, I wanted to offer that you should 1) ask for a phleb. tech who has done lots of kids' draws -- some haven't 2) ask to have her lay down (every lab has a spot for this, and for my son it has made a big difference in his comfort level-- he has monthly draws for other, non celiac disease reasons) and 3) make sure they use a butterfly syringe -- a teeeeeny needle with little "wings" the tech can use and MUCH easier to get a good first draw than an adult's syringe (which I have seen techs try to use with children) Don't be shy about asking, most labs are very glad to do anything to make it go smoothly.

Joanna

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I would never subject anyone to a gluten-free diet unless I had a diagnosis. Although everyone does get used to the taste of the food and the industry is doing a great job improving the food, it is still a strict diet and if there is no reason to be on it, why do it?

I recommend an experienced tech, although you may not find one when you walk into a lab off the street, so maybe you should call and ask when a person with experience with children is working. Alot of the labs in my area have techs that float (go from one location to another) so there is no guarantee the same person will always be in one lab. Usually labs in hospitals havepersonnel with experience with children. Children's hospitals are great for blood draws. I also recommend the butterfly needle, as they are tiny. This makes a tremendous difference on a person with small veins. On this I speak from personal experience-they run in my family and I usually end up black and blue for 5 days after a blood draw!) I have never had my children lie down for a draw, but if it has worked for one child it may work for yours too! I might have my younger daughter try it if she ever has to get blood drawn when she is still small. What i usually do is sit in the chair with my daughter in my lap. I think this is universal though. But if you have not done it, I will tell you that it relaxes the child AND prevents squirming as one arm solds the child's arm down. Not down towards the floor, but against the chest. I am sure you all do this for shots anyway, and it is just the reverse with the needle.

I do not think your daughter was tested too young, although that seems to be the next controversy brewing on this website. But I would absolutely go to a pedi GI no matter if I had to fly across the country or drive down the block. I would explain the history and get a bloodtest. If it came back indicating celiac disease was a possibility I would have an intestinal biopsy done in order to know for sure. I would not take her off gluten beforehand because the villi could heal and biopsy would not be accurate for celiac disease, which is the whole point of the testing anyway. I know it may be hard to see a child after the procedure, while she will still be groggy, but it is very important to have an accurate diagnosis so it is well worth it. The biopsy itself does not take long at all so you will not be waiting for long. And the results come back fairly quickly as well, although this will depend on the hospital and lab. But after a week you will have the results and know what to do be it go gluten-free or have the pedi GI keep probing his mind and texts. If I did not have a biopsy I would always wonder if it really was something else. And if it is something else, it is important to know that too so it can be treated.

Good luck to you no matter which way you go!

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Just wanted to throw in my additional support for blood testing before going gluten-free. You might consider a biopsy as well, just in case, but you don't have to.

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Thanks everyone, The doctor took off Friday for the holiday, so I will be speaking with her on Tuesday. My daughter is no better, no worse, so we are in the same place. But , I didn't expect any improvement without doing anything anyway.

Thanks loads.

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