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Testing Question

Nic

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Nic Collaborator
Nic
Posted

Hi, as I have mentioned before my 4 year old is showing some signs of Celiac. He is constipated, has distended belly (although it is hard to tell because he is a bit chubby), and has developmental issues. His brother was diagnosed almost 2 years ago. He has had his blood tested for antibodies and it was negative but we all know how that goes. I spoke with the GI and he said we can have him test through Prometeus. I know it sounds stupid but I really don't want him to keep going through all this blood work because as a child with developmental issues he has been through enough testing and I don't want him to have to do it again. Also, chances are that he will still be negative through the blood as his last test was within the past 6 months. So after much research and advice from this forum I have decided on Enterolab. Here is my question: I cannot afford the both the antibody test and the gene test at this time. I think it is more important to test for the antibodies as then we will know if he is actively sick. I can always test for the genes later. Does that sound like the right plan of action? I figure if my father and my son have the gene, obviously so do I. And chances are my little one does too. Has anyone ever had a negative experience with Enterolab? I have only heard good things both on here and in the research I have been doing.

Nicole

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CarlaB Enthusiast
CarlaB
Posted

I think skipping the gene test is just fine. You might want to read the thread on gene testing, it has some enlightening information.

I was happy with Enterolab, but many of us are getting discouraged that Dr. Fine has gone yet another year unpublished. I guess at this point my feelings are mixed, yet I know that I have had very positive dietary response, so his findings on me were valid.

Nic Collaborator
Nic
Posted
  • Author
I think skipping the gene test is just fine. You might want to read the thread on gene testing, it has some enlightening information.

I was happy with Enterolab, but many of us are getting discouraged that Dr. Fine has gone yet another year unpublished. I guess at this point my feelings are mixed, yet I know that I have had very positive dietary response, so his findings on me were valid.

This is going to sound like an ignorant question but why is he unpublished? Is it his choice or is no one willing to publish him? I have been apprehensive about using them for fear of a false positive (which I have never really heard of before). This little boy happens to be a pasta boy and he will eat the gluten free pasta fine with with sauce but he loves buttered pasta and some of the gluten-free pastas that are not shaped like spaghetti tend to get a little mushy. He also loves mac and cheese. I know as he gets older his taste will expand but until then, I would hate to take from him what he loves for no reason.

Nicole

CarlaB Enthusiast
CarlaB
Posted

I believe he just isn't finished with his research, but I don't know.

Tinkyada Pasta is excellent -- all shapes and sizes.

happygirl Collaborator
happygirl
Posted

I'm going to offer the other side: I would have him gene tested through your doctor or through enterolab. If you get the gene test from Prometheus, it will be accepted in the medical community. If you use enterolab, even for the gene testing, I don't know how well it will be received....depends on your doctor, I guess. I know its not fun, esp for a sweet four year olf like yours. But you will at least know if he has the genes...if he doesn't, you know you won't be doing the antibody/Celiac panels again. Regardless of any of the tests, I think trying him on the gluten free diet would be beneficial given your family situation (you actually wouldn't even have to order the gluten-free part, if you are willing to go on the diet anyways.)

Other Celiac experts question his work because his work has not been replicated by others. I am not defending him either way, by the way. I do not know if his work has ever been submitted for publication, or if it has and he has been rejected based on 1. new idea or 2. unsound medical practices. Part of the difficulty in stool testing is that our intestines normally have IgG and IgA antibodies in our stool...so it is apparently hard to distinguish between what is normal and not. Plus, we all make certain levels of antibodies to foods.

I have various theories on all of this of course :)

However, all of this being said, I had the full panel run by them because I was having non-celiac related problems. I also had problems being diagnosed (poor medical advice) and would give anything to hav had a solid course/traditional diagnosis (I did have positive blood work though). I am now having other food issues. Doctors have all told me its a bunch of hogwash. But I tested for 1 of the celiac genes and a gluten sensitivity gene. Go figure :)

But--------no matter the results of any of my tests: traditional/non traditional, gene vs. no gene: I do better gluten free, and I don't need a test to tell me that.

Good luck!

rez Apprentice
rez
Posted

I agree with the previous poster and Carla. I would do the gene test through your medical doctor. We did Enterolab, but I really don't believe it 100%. The only thing to remember about the gene test is that they generally only look for DQ2 and DQ8 only. I have also heard that DQ1 also seems to play a significant role. People are doubting Dr Fine and Enterolab because he diagnoses everybody with either Celiac or Gluten Intolerant Genes. So pretty much, he's reccommending everyone to live on a gluten free diet, BUT so is every other doctor out there, on Oprah etc.. They just don't call it a gluten free diet. You won't find a diet giru out there who tells people to eat bagels, muffins, cookies, etc. :):) It's all in how you look at it. My son had apthous stomatitis (recurrent canker sores) since age 3. Doctors said all the canker sores were normal. I mean multiple big, nasty, huge, painfull sores. Normal????????? Well, he had 5 bouts of stomach flu this year and then never got better, complaining of acid reflux and a stomach ache all the time. Also, he had up to 3 cankers constantly in his mouth. The medical community didn't do the right test in the beginning and to make a long story short we put him on a gluten free diet ourselves. Then, the doctors figured out which tests to run, but it was too late. We had genetic testing done and he has a double copy of DQ2. That is the main gene that predisposes you to celiac. That's what stinks about this disease. It's rarely black and white. Get the book that Dr Greene just wrote. It's very factual, and he admits that the tests can be false negative. He also says Celiac is a very serious condition that people should not self diagnose. My feeling is most people have no choice because traditional medicine fails them. My son is doing soooooo much better gluten free. He's 8. He knows if he ever questions it, he has the option to go back on gluten and go for a more accurate diagnosis. He's happy and healthier than ever and wishes to go nowhere near bread. That's good enough for me. :):) Good luck.

FeedIndy Contributor
FeedIndy
Posted

We skipped Enterolab because I didn't really have the funds for a non-insurance paid test. DD tested negative for celiac, but after reading up on it in the first couple days after the test (before the results came in) DH and I were absolutely convinced that was her problem-she fits the profile with nearly every known celiac symptom. We put her on the gluten free diet, and within 2 days noticed a huge improvement. On day 3 the doc called with her negative results. I told him what we did and he encouraged us to continue the diet. On day 5, she had to go to the doc for an unrelated illness so she was weighed and had gained 5 ounces in 5 days (failure to thrive was her number 1 problem).

He was impressed with the results and encouraged us to continue. He also referred her to an allergy/immunology doc for food testing. She came back negative to everything-including wheat and her other known problem foods. The allergist said the only way to confirm the celiac diagnosis was by putting her back on wheat and doing a biopsy, which she discouraged at least until DD has caught up on size.

Basically, we have an unofficial diagnosis by dietary response. She has now gained 3 pounds in 2 months and has normal diapers, which I'd completely forgotten what they looked like! I wish we had an official diagnosis so our families wouldn't think we're neorotic. The most important thing to me is that it's working. Reaction trumps test results, in my opinion.

Good luck with whatever you decide. I hope you get some answers soon!

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Nic Collaborator
Nic
Posted
  • Author

Has anyone heard of Kimball Genetics? I just received via e mail Scott Adams celiac.com newsletter and it gives a link to this website www.kimballgenetics.com/celiac and it is a company that does genetic testing through cheek swab. They also offer antibody testing but through blood (I guess you have to get it drawn somewhere). Anyway, anyone know about them and their reliability?

Nicole

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