Positive Blood Test, Negative Biopsy

[TheFuzz]

I had a "weakly positive" blood test in December, and a negative biopsy in January. Before the biopsy, I went 3 weeks on gluten, and I felt absolutely awful. I have been off gluten for a month, and still feel bloated, some diarrhea, and abdominal discomfort. The GI doc said the biopsy is the gold standard, so I probably don't have celiac, given the weak blood test result. I'm not sure what test it was. He suggests maybe I have lactose intolerance or fructose intolerance as well as gluten intolerance. He said to go off milk etc for a couple weeks and see if it helps. I'm at a loss now, as I don't want to keep guessing what the problem is after 5 months of discomfort! I also have had, for a good 10 years a rash on my chest that I suspect maybe DH.

So, can I safely rule out Celiac disease, and it is just an intolerance, combined with possible other in tolerances? Can I have other tests? He just wanted me to try the lactose thing and see how it goes.

[BabsV]

  On 2/18/2012 at 4:37 PM, TheFuzz said:

I had a "weakly positive" blood test in December, and a negative biopsy in January. Before the biopsy, I went 3 weeks on gluten, and I felt absolutely awful. I have been off gluten for a month, and still feel bloated, some diarrhea, and abdominal discomfort. The GI doc said the biopsy is the gold standard, so I probably don't have celiac, given the weak blood test result. I'm not sure what test it was. He suggests maybe I have lactose intolerance or fructose intolerance as well as gluten intolerance. He said to go off milk etc for a couple weeks and see if it helps. I'm at a loss now, as I don't want to keep guessing what the problem is after 5 months of discomfort! I also have had, for a good 10 years a rash on my chest that I suspect maybe DH.

So, can I safely rule out Celiac disease, and it is just an intolerance, combined with possible other in tolerances? Can I have other tests? He just wanted me to try the lactose thing and see how it goes.

Were you off gluten before the blood test? If so, for how long? That could impact the results. How many biopsies did they take? Don't they now say 8-11 samples are best yet a lot of doctors take only 3-5?

The diet doesn't always work immediately...I'm 6 months in and only in the last 2-3 weeks have I seen a decrease in my pain issues (on some days.) Also, have you cleaned out your kitchen, scrubbed all the pans, replaced your toaster and strainers, checked any medicines you take regularly for gluten, etc? There is gluten hidden EVERYWHERE.

Try giving up dairy AND gluten and see if it helps. When I went gluten free I cut out dairy also and it made a big difference.

Not sure about other tests. There are many more experienced and knowledgeable people on the forums who can probably address that.

As far as test results go, I had a negative biopsy in February 2011 (was being scoped for something else) but ended up getting progressively sicker and sicker...the doctors blamed it all on GERD. Finally, after a drastic weight loss and experiencing debilitating abdominal pain one doctor suggested the Celiac blood panel as a test of exclusion (this was when they were convinced it was all in my head -- they even sent me to a psychiatrist!) which came back positive to everyone's surprise. Was scoped again in August 2011 and yep, there was damage and positive biopsy results.

[Lisa]

  On 2/18/2012 at 4:37 PM, TheFuzz said:

I had a "weakly positive" blood test in December, and a negative biopsy in January. Before the biopsy, I went 3 weeks on gluten, and I felt absolutely awful. I have been off gluten for a month, and still feel bloated, some diarrhea, and abdominal discomfort. The GI doc said the biopsy is the gold standard, so I probably don't have celiac, given the weak blood test result. I'm not sure what test it was. He suggests maybe I have lactose intolerance or fructose intolerance as well as gluten intolerance. He said to go off milk etc for a couple weeks and see if it helps. I'm at a loss now, as I don't want to keep guessing what the problem is after 5 months of discomfort! I also have had, for a good 10 years a rash on my chest that I suspect maybe DH.

So, can I safely rule out Celiac disease, and it is just an intolerance, combined with possible other in tolerances? Can I have other tests? He just wanted me to try the lactose thing and see how it goes.

How many samples were taken to biopsy? After your weak positive, it might not have been enough time to create significant damage, or affected areas might have been missed.

My suggestion would be to eliminate dairy products for three or four weeks, continue to eat gluten free...and I'd be willing to bet that you will see a vast improvement.

Positive blood work and positive dietary response is a diagnosis. And the current trend is to have multiple indicators in a diagnosis

[TheFuzz]

I had been on gluten full time before the blood test, as there was no suspicion of celiac beforehand, so I wasn't gluten free. I went off gluten after I got the positive blood test for 2 weeks, then found out about the biopsy, so back on gluten for 3 weeks. I'm not sure how many biopsy samples were taken, the GI doc basically didn't want to discuss it as he was being pretty certain it wasn't celiac. He was the one who did the scope, so maybe he is arrogant or something? Dunno, I only met him briefly.

I have cleaned the kitchen pretty well, new toaster, utensils etc. I haven't eaten out in a month, though in the first 2 weeks I had some chicken broth that I don't think was gluten free. Everything else should be safe food wise. Oh I have also had GERD for a long time, about a year and half ago started pantaloc.

[faithforlife]

Yes my son had a positive blood test and only inflamed intestine but had so much improvement going gluten-free we'd never go back.