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Negantive Celiac Sprue Blood Test
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Even after my Celiac sprue blood work came back negative my symptoms continued until I totally eliminated all gluten from my diet. Finally 6 months later the nausea, diarrhea,skin lesions, weight loss and fatigue have finally ceased. The depression, anxiety, insomnia and a host of other physical ailments I had as well are gone as well. PROBLEM- I can't find a doctor who believes me! Has anyone else experienced this? Even the slightest amount of gluten starts an "attack"!

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Don't worry about a doctor...I spent 7 years trying to convince there was something there...but as long as you feel better, what difference does it make? They don't need to give a prescription for you to eat gluten free...eat gluten-free for yourself, not the doctors!

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I think we just have to accept that some doctors don't know what they are doing.

I never said ALL, I just said SOME. If you feel better when gluten-free, well, eat gluten-free. You probably are a coeliac or gluten intolerant, either way, as long as you feel okay!

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Don't worry about a doctor...I spent 7 years trying to convince there was something there...but as long as you feel better, what difference does it make? They don't need to give a prescription for you to eat gluten free...eat gluten-free for yourself, not the doctors!

I am staying gluten-free for me and for the first time in YEARS feeling better! Thank goodness I found this site and forum to get some support. Thank you all so much! From what I have been reading on here I am sure I have the disease and am pretty sure my blood test was negative because it is advanced. I don't think I need an invasive biopsy to figure that out.

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I think we just have to accept that some doctors don't know what they are doing.

I never said ALL, I just said SOME. If you feel better when gluten-free, well, eat gluten-free. You probably are a coeliac or gluten intolerant, either way, as long as you feel okay!

I am SO MUCH better and grateful I found this site!

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I am staying gluten-free for me and for the first time in YEARS feeling better! Thank goodness I found this site and forum to get some support. Thank you all so much! From what I have been reading on here I am sure I have the disease and am pretty sure my blood test was negative because it is advanced. I don't think I need an invasive biopsy to figure that out.

I didn't know until after the fact I had to be eating gluten (bad doctor) so of course mine came back negative. Oh Well I'm not going back to get retested. I've been gluten free for a year and a half and am feeling awesome and that's all that matters!

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I am SO MUCH better and grateful I found this site!

:D Hurray! So am I, as well!

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Welcome to the site Marini and Meteto! :0

Marini, you are so right. It is best to eat what makes you feel right, regardless of tests or what other people may think of your diet. We are still learning about celiac disease and doctors re just starting to admit that there is such a thing as NCGI (non-celiac gluten intolerance). So lots of things about this condition and the diet are left to us to figure out ourselves. That's why this forum is so useful as we can get info from other celiacs and how their bodies respond to different foods.

And Happy Easter to both of you! :)

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Welcome to the site Marini and Meteto! :0

Marini, you are so right. It is best to eat what makes you feel right, regardless of tests or what other people may think of your diet. We are still learning about celiac disease and doctors re just starting to admit that there is such a thing as NCGI (non-celiac gluten intolerance). So lots of things about this condition and the diet are left to us to figure out ourselves. That's why this forum is so useful as we can get info from other celiacs and how their bodies respond to different foods.

And Happy Easter to both of you! :)

I am figuring out more and more things for myself thanks to this site and the info on the net. Years ago my eyelashes and eyebrows fell out and never grew back, my hair quit growing. Since switching to gluten-free products they have grown back! I can hardly believe it! My hair is past my shoulders for the first time since high school too. I do have lots of scars on my arms and hands from the lesions I had last fall (I wish my doctor would have biopsied them, someone told me she could have, but she never mentioned it) but the constant itching and rash is long gone. THANK YOU Celiac.com!

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That's great Marini! wow, hair growing back in is fantastic. The damage to our intestines can cause us to not absorb nutrients, and that leads to lots of problems. The fat soluble vitamins are the ones they say don't get absorbed well.

Have you checked out the dermatis herpetiformis section of the board? That's the skin rash that people with celiac sometimes get. Some of the people with DH say that they have to avoid iodine in their diet or they get flares of the rash.

Dermatitis Herpetiformis on celiac com

This site has a listing of the fat soluble vitamins and their uses in the body. I don't think this is a complete list of symptoms though.

Fat-Soluble Vitamins on Colorado State University site

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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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