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All Tests Seem To Be Negative Now What
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7 posts in this topic

Hi Everyone,

I got the tests results back and everything is negative except for the fact that my 9 year old daughter has DQ2. Her Pediatrican is like "all those genetic tests do is scare people - it is nothing." I had the test done at Stanford and they said that it is nothing to worry about - just watch her. Everyone also says don't bother with the diet - too difficult - no reason to go on it. I took her today for a lactose test and it appeared that it was going to come back negative. I won't know until Monday but the nurse acted really surprised that she had no symptoms during the test. I am beginning to feel stupid. I just don't know what else to atribute her terrible gas and fatigue to. She does present very healthy - no weight problems or skin problems.

I am thinking about having her do the test through the Enterolab but maybe I should just stop.

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Did a dietary change make any difference to her symptoms?

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ADevoto,

If your daughter has the DQ2 Gene don't stress out about it. However, if she is having symptoms there is a very good likelyhood that she has Gluten Intolerance/Celiac Desease. If she had the blood tests and they were negative, that is not unusual to have negative blood and yet still have Gluten Intolerance. If she had the biopsy and it was negative she could still have Gluten Intolerance according to Dr. Fine who runs Enterolab. The Villi are not atrophied, which equals Celiac Desease, and thus a negative biopsy. However, the villi could still react to Gluten when it is present, thus still have gluten intolerance. I would recommend Enterolab if she is having symptoms. However tarnalberry has a good point also. If dietary change make a difference that could be your answer also. Doctor's are not all knowing and personally I think they are necessary for somethings, but we know our bodies and Mothers have a sense given by God to know if something is wrong regardless of what Doctor's say.

Since you already have the gene test, you can get tested with Enterolab for between $100 and $150.

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Thanks for the replies. We have not tried any diet changes yet. I wanted to get the test results back from the Lactose tests first. Her pediatrician thought that we should just treat her symptoms - constipation (by cleaning her out and) and fatigue by giving her Melatonin. I still have this nagging feeling thats finr but it isn't treating the main underlined problem. Anyway, I think I will try the diet and get the enterlab test done. I am going to have her brother and I tested as well because I have bad IBS and he has other symptoms that could be.

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Adevoto.

Has your daughter had a biopsy? My blood tests were 100% normal. My biopsy was 100% abnormal!

My diagnosis was delayed because of my blood work being normal. While the blood test does help with the diagnosis of some with celiac, a negative blood testdoes not rule out the disease completely.

Ruth

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I would defenitly try the diet! also the blood isn't a 100% test, the diet is.

Also, completely off the subject... do you live in Stanford? If you do i would love to talk to you.

So try the diet, also she can have the gene but it just hasn't gotten bad enough to show in the blood test.

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Thanks again for the additional replies. The doctors at Stanford do not want to do a bioposy (sp). So, I guess I will see what the lactose test shows on Monday and then make a plan. Probably will go on diet and get other family members tested.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
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    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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