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"negative" Blood Test But Still Symptomatic
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Hi! I'm new here! Just signed up! I am a Type 1 Diabetic (diagnosed in 2008 at the age of 27)...and in addition am "lucky" enough to have another auto immune disorder - Vitiligo. Since diagnosis, my bilirubin has been higher than normal - never alarmingly high, just high enough to warrant my own concern. In 2010, I had my gall bladder removed and still am finding the whole bathroom thing a concern! I never know which foods are going to send me running to the bathroom and which ones I will be fine with. On top of those things, I have dermatitis and recurrent headaches...so enough that made my doctors think Celiac might be an option. I had a panel done but it was "negative". I was concerned enough still that I went to see a GI specialist who told me that just because I tested "negative" that she was not convinced I did not have Celiac due to my preponderance of other symptoms. So I have an upper endoscopy scheduled for the 19th. I am very "excited" to see what the results will be just for my own peace of mind. I guess what I am wondering is whether anyone here ever tested "negative" but an endoscopy showed Celiac? How common is that?

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I've seen several people on here mention that they were positive on biopsy, but negative on blood tests. Also, if you have or can get the actual blood test results with reference ranges, etc. and post them here some of those who are more familiar may have some input. In particular, it would be good to know which tests were part of the 'panel'.

And welcome to the forums!

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Hi - thanks for the reply! Unfortunately my endo ordered the tests and he never gave me any of the numbers - just told me I was "negative". I have reason to believe from what my GI specialist told me that the panel may have been incomplete. I think she plans to run the tests again and do a complete panel so I will get the numbers then!

Thanks for the welcome!! :)

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You can request records if you are in the U.S.

Also consider looking into the genetic test.

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Request the records from my doctor, you mean?

I don't know if Celiac runs in my family, but I guess you never know...it could be way back there..

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I would definitely ask for a copy of your blood tests. Chances are very good that you did not get the complete panel of tests. Even if you did, a negative result does not rule out Celiac. Sort of, if it is positive, you know, but if it is negative, you should still keep looking. Same with the biopsy. It can be falsely negative for a variety of reasons. After the procedure, start the diet. Think of it as the "final test." Do not let negative blood or biopsy results lead you to believe gluten is not causing your symptoms.

When you try the diet, give it 3 months. I found that tracking my symptoms really helped. I used a calendar and started while I was still eating gluten. I jotted down how I was feeling and any symptoms I had. I continued after I started the diet and week after week, I had less to record on the calendar. It was gradual, but looking back, remarkable.

Good luck to you -

Cara

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Thanks so much for all the information and advice! It makes all of this much less daunting. Although if I have it, I have a feeling cutting out all the gluten in my life is going to be much harder than I am imagining at this point.

Will definitely ask my endocrinologist for more details about my test results. I have to call him for advice regarding fasting for the endoscopy and my diabetes. That's what I'm most worried about! I already had to reschedule an ultrasound before the endoscopy because my blood sugar was low!

Another question - have a lot of you had your gall bladder removed? Was it pre or post diagnosis? Previously I had chalked up all my stomach upset to the removal of my gall bladder but when I read about some of the other symptoms that fit what's going on with me, I started to suspect Celiac a bit more.

I have also read that often people with Celiac will not react to all forms of gluten before going off gluten entirely because they may have just gotten used to a food that they eat frequently (ex: I eat crackers all the time and I never react to those!) but then when going off gluten altogether if they eat those foods again, they will experience a reaction because their bodies are no longer "used" to that food.

Is this true?

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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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