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Could Positive Blood Test Be Wrong
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Hi

My daughters blood test came back positive she goes for her biopsy on the 29th of this month. I took Ronni to the doctors because she was always sick. Well ronni hasnt had diarrhea or vomiting this month she still hasn't gained any weight and shes not gluten-free. I was just wondering could the blood test be wrong? maybe this is just wishful thinking.

Hillary

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Hillary,

As I understand it, it is common for symptoms of celiac disease to come and go. I believe the blood tests typically do NOT produce false positive results--though false negatives are another story entirely. I totally understand your wish, however! I hope your daughter's biopsy conclusively proves the diagnosis, so you can move beyond the doubt you are understandably experiencing right now and put her on a gluten-free diet with a clear conscience. Good luck to you both as you prepare for the biopsy!

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Thanks Sarah, I'm sitting here at work in tears. I just hope I can do everthing right so my daughter is healthy. I know I will have more questions after the 29th.

Thanks Again,

Hillary

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Give that girl a big hug and tell her that the biopsy will be fine!! We just got through it with our two year old! He did great!

Don't be suprised if the result of the bipsy is negative.. I would trust the blood tests thought because your body does not just randomly make antibodies!

I am going to have to probably fight to get a blood test because my doc went straight to the biopsy!!!

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Hi,

Ronni had her biopsy yesterday. Before her biopsy Ronni's doctor explained to me that it was thought that celiac disease affected the intestines but they have come to learn it affects the stomach as well so she was going to do a biopsy of her stomach to. After the biopsy her doctor told me her stomach had some inflamation you can imagine how upset that made me then she tells me her intestines are twisted may need surgery to repair. I asked if I should start her on a Gluten free diet and she told me not yet. Im writing this and I know it probably doesnt make any sense, anyway has anyone ever heard of celiac affecting the stomach and why would I be told not to put her on a gluten free diet?

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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!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • 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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