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Testing: When And How
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At 28, I finally found out I have celiac. Now my worry is how to handle it with my children. I'm convinced both of them have it but neither show strong signs. I see symptoms but that is because I'm looking. Neither child is sickly, but for example, my 9 mos old son never, and I mean never, spits up unless he has something w/ gluten and my 6 yr old is frieghtenly pale, even for an Irish girl :P . Her moods are starting to get a bit unruly and she is just beginning to complain about belly aches. Why aren't there tests that can diagnose without having to wait for damage to happen first? Just tonight I saw in some posts, there's a genetic test. Is this common and I just didn't know about it or is it still a work in progress? I heard of genetic testing for neurological disease when I was pregnant (also just found out Huntington's is in my family) but no one ever mentioned genetic testing for celiac. I just feel so frustrated and I want definite answers, which seem impossible!! I just want to make the best decision for my children and I feel like I don't have enough information to made a wise decision. Thanks for any advice.

---Suzanne

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Hi Suzanne:

I went the conventional route looking for a dx, I went through all sorts of tests and everything came back negative. I was sick of being sick and being told that I had IBS that I finally ordered a stool panel test from Enterolab . This way of testing is more sensitive than blood and a more accurate way of testing.

After I was dx my daughter and I both went gluten-free but then I decided to have her tested as well, her test came back positive too. I was happy that she did not have to endure all the tests that I did and that after going gluten-free she was like a new kid.

Good luck to you and your children! :D

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Your 9-month-old is too young to be tested accurately. Your daughter should be tested immediately. Personally I'd go the conventional route starting with a FULL celiac panel. Iga, total Iga, Igg, and Ttg.

To my mind, the gene test is only moderately useful. If you don't have the genes then you know you don't have and can't get celiac disease. But if you do have the genes that doesn't tell you whether you have it or not. Many people have the genes but don't have celiac disease.

richard

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Spitting up, paleness, moodiness, and tummy aches are all mild symptoms of celiac. Since you have celiac, have your doctor order the gene panels for both kids. It is hereditary, and it will make a difference in their lives. Enterolab has a stool test that is non-invasive, and very accurate. Yes, it is expensive, but not as expensive as repeated trips to the doctor! Since you are seeing signs in your children, then it is wise to get them tested. Using Enterolab, you can also take them gluten free right away. The sooner you know and start treatment, the healthier they will remain!

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It is completely untrue that many people have the gene for celiac disease but don't have the disease!!! If you have the gene, you have the disease. You may not have damage to the villi in your intestine, but you have celiac disease! I respecfully refer you to EneroLab's website and Dr. Fine's online lecture in which he explains how EARLY INTERVENTION is the point of these genetic tests, before any damage or symptoms are apparent. There may be other diseases in which a gene's presence doesn't necessaily mean you will get the disease, but celiac disease isn't one of them. I repeat, if you have the gene, you must go gluten-free!

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Dr. Fine is at odds with other well-known experts on this point.

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Two separate board-certified pediatric gastroenterologists on staff of our local children's hospital as well as my own doctor recommended genetic testing for me and my family. Dr. Fine may be a controversial figure, but genetic testing is regularly relied on by the mainsteam medical community. And all three docs said a positive result means no gluten for life.

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For the above posts talking about Dr. Fine. This is what is says on Enterolab website about Genetic Testing. He does not say that you have celiac disease if you have the gene. But Gluten Sensitivity is stil possible...Read the highlighted part.

I have also read his lengthy essay on the subject and he does not state that you have celiac disease if you have the gene.

What role does genetic testing play in the diagnosis of gluten sensitivity?Currently, tests are available to detect the genes that control the immune system's reaction to gluten. These genes are called human leukocyte antigens or HLA. There are several types of HLA genes within each person. It is a particular type called HLA-DQ that is most useful in the assessment of the probability that a person may be gluten sensitive. The reason gene testing assesses probability rather than disease itself is because some people have the genes for gluten sensitivity but have no detectable evidence of the immune reaction to gluten or have no symptoms. In such people, gluten sensitivity is still possible but the probability (or in other words the chances or the odds) is lower than in a person who may be having symptoms attributable to gluten or that has antibodies detected. HLA testing is most useful when there is diagnostic confusion about whether or not a person is gluten sensitive. Such confusion often stems from one of the following: atypical intestinal biopsy results, the presence of associated diseases (such as microscopic colitis) that may mask the expected improvement of symptoms when gluten is withdrawn from the diet, negative tests for gluten antibodies in the midst of suggestive symptoms or signs of gluten sensitivity or celiac sprue (see the paragraph below to understand the difference), or when there are no symptoms at all and the person or the doctor can hardly believe that gluten sensitivity is really present. Other situations that HLA testing is useful is when a person is already on a gluten-free diet, and for testing family members (particularly children) for the odds that they have or will develop gluten sensitivity.

Just thought I would clear up the misinformation. You can even e-mail him if you want and he will write back himself with the answer. Hope this helps.

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One more note...if you have the gene, but don't have celiac disease, gluten could trigger celiac disease at some point in your life. I found out about my gluten sensitivity because I developed symptoms of Hashimoto's. I am sure the gluten in my diet triggered the Hashimoto's because since going gluten-free my symptoms for Hashimoto's Hypothyroidism have gone down. I however am still waiting on my test results from Enterolabs. I e-mailed my celiac disease blood panel results to Dr. Fine and he said I don't have celiac disease but am Gluten Sensitive.

All this to say havimg the gene does not mean you have or ever will have celiac disease, but at the same time it could be triggered at some point. Thus going gluten-free is a good prevention because you may be asymtomatic with celiac disease but it may trigger an autoimmune response such as thyroid problems, diabetes, MS, arthitis etc. as I believe it did with myself and my Grandfather.

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How will your blood tests show if you are just gluten sensitive, or actually have celiac?

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Here were the results of my blood test:

Antigliadin Abs, IgA was Negative

Antigliadin Abs, IgG was 34 H Units

t-Transglutaminase (tTg) IgA was Negative

Reticulin IgA Ab was Negative

Reticulin IgG Ab was Negative

This was the reply Dr. Fine gave me when I e-mail the results to him:

Your positive antigliadin antibody is a sign of gluten sensitivity. Going gluten free will indeed prevent celiac disease and help your thyroid maybe to the point of returning to normal.

He also gave me this link http://www.enterolab.com/Essay to his essay which is were he talks about early diagnosis. I ordered the stool and gene test because I want to know how much if any damage has been done to my intestines. The essay gets a little technical in places, but he is very good and explaining even the technical stuff in layman's terms. Hope this helps.

I also have two childern. One 7 months and one 2 1/2 that I am trying to figure out what I am going to do with them. I have actually put the two year old on the gluten-free diet and am going to be careful to make sure the 7 month old doesn't get any gluten for awhile at least. We have to figure out if insurance will pay for the Enterolab tests before I can get the 2 year old tested.

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I guess I forgot to answer your question specifically...

Blood tests can't always confirm gluten senstivity or celiac disease which is what Dr. Fine explains in the essay, that is why he recommends the stool test. But in my case the main blood test for celiac disease which is tTg was negative but one of the Antigliadin antibodies was positive. Thus not to the point of celiac disease but on the way there.

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Thank you for the info, Taneil...I guess my doctors were recommending that if the gene was present we go gluten-free and not tempt fate! Good luck with your test results...waiting is the worst part.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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