Is it celiac?

[Elizabeth K]

I was recently hospitalized for 5 days after what I thought was a horrible stomach bug that wouldn’t go away.  My symptoms were as follows:

extreme dizziness, constipation, nausea (esp after eating) very low blood pressure, complete numbness in left leg.  Additionally I was hospitalized 5 years ago for a blockage in my small intestine with identical symptoms.  My sister was diagnosed with celiac 23 years ago after almost losing her to the same symptoms.  My celiac “test” came back normal range but I don’t eat anything with wheat in it.  I was eating a lot of oatmeal and a nutrition bar that apparently did have gluten.  Since Monday I have cut gluten completely out of my diet and my symptoms are improving somewhat.  I’m going to see my Gastro dr on Wednesday.  Could it still be celiac?  I’m beyond frustrated at this point because although my symptoms are better I’m still really struggling with some dizziness, numbness and inability to eat much although I feel like I’m getting better each day.   Also here is what my blood work did show-

LOW count of protein levels, calcium, platelets, blood pressure 

HIGH monocytes count

Any help you can give would be greatly appreciated!

[trents]

Gluten sensitivity as opposed to celiac disease is a possibility. Many of the symptoms and healgth risks are the same. The difference is that with gluten sensitivity there is no damage to the villi of the small bowel. If you have a first degree relative with active celiac disease there is a 44% chance you will develop active celiac disease.

[Elizabeth A K]

13 minutes ago, trents said:

Gluten sensitivity as opposed to celiac disease is a possibility. Many of the symptoms and healgth risks are the same. The difference is that with gluten sensitivity there is no damage to the villi of the small bowel. If you have a first degree relative with active celiac disease there is a 44% chance you will develop active celiac disease.

 

13 minutes ago, trents said:

Gluten sensitivity as opposed to celiac disease is a possibility. Many of the symptoms and healgth risks are the same. The difference is that with gluten sensitivity there is no damage to the villi of the small bowel. If you have a first degree relative with active celiac disease there is a 44% chance you will develop active celiac disease.

The only test I had so far is the tTG test.  However this was done after about 3 weeks of vomiting and barely eating anything. This verbal was included in my chart “ a negative tTG IgA result does not rule out the absence of celiac disease. This result can often be explained by selective IgA defeciency, a relatively frequent finding in celiac disease. Results of this assay should be used in conjunction with clinical findings and other serological tests for the diagnosis and monitoring of C”

My question is this:  what test will give me a definitive diagnosis if I’ve already gone gluten free and the past month I’ve been eating very little and what I have eaten has been regurgitated?

[trents]

Unfortunately, any test done at this point may not be accurate. The guidelines are daily consumption of gluten equivalent to two slices of wheat bread for 6-8 weeks before the sero antibody test and at least 2 weeks for the endoscopy/biopsy. So your options would seem to be go back on gluten and gut it out (excuse the pun) until you can be retested or have an endoscopy/biopsy or continue to eat gluten free and see if there is improvement.

[GFinDC]

The tests depend on antibodies being active in the blood stream.  So they aren't accurate if the antibodies levels are falling because of the gluten-free diet.  The tests are DGP IgA, DGP IgG, EMA, total serum IgA, ttg IgA.  The total serum IgA test is a measurement of your immune systems general ability to make IgA type antibodies of any kind.  Since the IgA antibodies tests depend on that, they are useless in people who don't really make IgA antibodies.

People often say they have stronger reactions after stopping gluten and then starting eating it again.  So some people don't finish the gluten challenge because of their reactions.

Currently their are no tests available that can detect celiac without the gluten challenge.  Some of us have an immune reaction to oats also.  Dairy can also be a problem.

Edited May 30, 2021 by GFinDC

[Elizabeth A K]

At this point, I’m afraid to re-start eating gluten because after a month of being sick, I’m finally feeling better.  Any advice?