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"negative" Blood Test But Still Symptomatic

Sarahsmile416

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Sarahsmile416 Apprentice
Sarahsmile416
Posted

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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ciamarie Rookie
ciamarie
Posted

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!

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

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!! :)

shadowicewolf Proficient
shadowicewolf
Posted

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

Also consider looking into the genetic test.

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

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..

Cara in Boston Enthusiast
Cara in Boston
Posted

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

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

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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      Disregarded

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      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
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