Negative Blood Test Results, What Do I Do Next?

[ElizabethMichaelS]

Recently I've been suspicious that I'm gluten intolerant or have celiac disease. After going on a diet without gluten in it, I felt amazing for the first time in my life. My constant alternating bouts of explosive diarrhea and constipation were gone and so were the random rashes on my face and arms, chronic fatigue, mental haze, extreme bloating, puffy eyes, acid reflux...gosh I can't even think of all of the symptoms I had. 

 

After being gluten free for a month, I read that the test results only work if you are currently consuming gluten. For the week before the blood tests I ate gluten everyday (and paid dearly for it).

 

I spoke with my doctor and she was pretty certain I have celiacs, but the test results came back negative. 

 

I'm not sure where to go from here. Should I pursue further testing? I'm really tired of dealing with feeling so horrible all of the time. Especially since I've had a taste of how good I could feel.

 

I was tested yesterday and the blood tests came back today and were negative. However my vitamin D, Folic Acid and B12 are all really low.

 

I read an article in the World Journal of Gastroenterology that closely linked Celiacs with Hashimoto thyroiditis. I mention this because this past month we found out that my dad has Hashimotos.

 

Any advice would be so much appreciated!

[nvsmom]

Welcome to the board.  

 

The fact that you were off gluten for the month prior to testing, and were only eating gluten in the week before the test,could have caused a false negative celiac test. You could be one of those individuals whose antibody levels drop quickly after they go gluten-free. A gluten challenge of only a week may not have been enough to raise your antibodies to detectable levels.  For those who have been gluten-free for a long time, it is generally recommended that the patient eat the equivalent of 2 slices of bread per day for 2-3 months (3 months being better) to get an accurate test. Gluten challenges for endoscopic biopsies are generally much shorter at only 2-4 weeks duration.

 

Did they run the full celiac panel?  That would include:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (an older and less reliable test)

 

... Oops, I just realized that you probably have that list from the World Gastro article.  LOL  Was it this one? Open Original Shared Link

 

Celiac is strongly linked to other autoimmune diseases. It's strongest link is to type 1 Diabetes, but coming in at a strong second is thyroiditis. If you have family members with those diseases, or other AI diseases like RA or lupus, , you are at a higher risk of developing celiac disease.... Or those other diseases for that matter. I personally developed a bleeding disorder (ITP) and thyroiditis because I lived with untreated celiac disease for so long.

 

If you can't get retested because the gluten challenge is too painful, I would urge you to go gluten-free. You felt better before and you probably will again. At the very least you have proven that you have non-celiac gluten intolerance (NCGI) because your celiac symptoms improved while gluten-free. I personally would guess that you have celiac disease if your family has a history of AI diseases... Be careful not to leave yourself untreated because you will then be more likely to develop other health problems.

 

Best wishes, and welcome again.