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Testing Question
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4 posts in this topic

We are still in our testing phase. The specialist claimed the paed did not order the correct testing for Celiac. <_<

Anyway, we are going back to a different specialist but at the same office on Wednesday so I've been doing some more research because we still have no difinitive answer (the lab has not returned the results of the last tests).

I ran across this article http://cpmcnet.columbia.edu/dept/gi/celiac.html . In it the author says, "There is no test yet which is definitively diagnostic of celiac disease. Relief of symptoms or reversion of an abnormal intestinal biopsy to normal on a gluten-free diet is the most convincing evidence that an individual has celiac disease or gluten sensitivity."

Is this simply old information? I am wondering because we have placed our son on a gluten-free diet and he has improved nearly 100%. Whenever we waver from that diet in any way, even to wheat-free foods, his symptoms return.

Thanks so much for any information on this.

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None of the current tests are perfect. The blood tests can indicated celiac, and testing positive on more that one is highly significant. If the biopsy shows villi damage, especially with positive blood tests, then celiac will probably be diagnosed. There are one or two other things which can cause villi damage, though, but they are very rare.

Also, if you (or your son) is already on a gluten free diet, then that can mess up the test results. The tests are most likely to be false negative. You usually have to be eating gluten on a regular basis for a long time in order for the tests to be positive.

Debbie

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I lost hope in a lot of doctors. I had positive bloodwork for celiac disease, but my doc said everything looked fine in my endo/colon (which i took today), she just has to test the biopsy. It may just be that your son is gluten sensitive and does not have celiac disease- beware I am not a doc, just giving you my opinion- but that what my doc told me. And sometimes test will turn up negative- especially when your son is on a gluten-free diet. My advice is to do whatever makes him feeling better- if the diet work then continue, regardless if docs say he doesnt have celiac disease. Make sure you check for everything possible, get 2nd opinions. good luck!

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Okay, heres the simple deal... if your child gets better with gluten-free, and worse when he gets gluten that is diagonostic enough.

A full blood panel and biposy could confirm that, but ONLY IF YOU DO NOT PUT HIM ON THE GLUTEN FREE DIET. You siad he is currenlty on the diet, so his test will not be usefull.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • 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!
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