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So, Do I Have Celiac Or Not?

Aeva

By Aeva
in Coping with Celiac Disease

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Aeva Rookie
Aeva
Posted

I'm very confused. I was diagnosed about a year and a half ago with celiac based on these bloodwork results:

Deamidated Gliadin Abs, IgG: 51.1

DQ8: positive

Then I had an intestinal biopsy and more bloodwork the other day (new GI) and nothing pointed to celiac. The supposedly 99% reliable biopsy came back negative (I was told to eat gluten for 2 days before) and the bloodwork came back all normal (the serology, not the same one as before). She's going to redo the genetic tests and see what shows up.

My question is...what??? How can some be positive and some be negative, and what does that mean at the end of the day? Do I have celiac or not? For those two days that I had to eat gluten, I didn't get as sick as I should have. I'm also still getting sick even while being totally gluten-free. What the heck is going on?

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mushroom Proficient
mushroom
Posted

Eating gluten for only two days is unlikely to have produced many antibodies in your blood or to have damaged your small intestine to show up on the biopsy. It is generally recommended that you eat the equivalent of 4 slices of bread for 6-8 weeks, or longer, before testing. To me, what your results show is that you have been doing a good job on the celiac diet and you should be proud of yourself.

Still feeling sick while eating gluten free is a possible indicator of another food intolerance. Did you give up lactose at the same time you went gluten free? I ask because if you have celiac damage in your small intestine, your ability to digest lactose will be impaired and give you gastric distress. Since your biopsy shows no sign of damage now, though, you probably should be able to handle it, although you might test to see if it makes a difference. Also, many of us find that we have other food intolerances once we get rid of the gluten. You will see a long list in my signature block. Soy is perhaps the most common one.

Experiment with your diet a little and if you can't find anything you would probably need to do an elimination diet to find what is bothering you, where you eat a very basic bland diet of meat, fruit, veg., rice, olive oil and once you feel all right with what you're eating you start adding foods back one at a time every four or five days.

Aeva Rookie
Aeva
Posted
  • Author

Rawr. You just confirmed my suspicions (which I didn't want to be true!). I've got a (second) lactose tolerance test in 2 days, so we'll see what that says. Like I said in the original post, she's also retesting the genetic bloodwork.

My doctor promised that 2 days was enough, but who knows. I think I'm going to start keeping a log again and see if there are any common denominators. I was so happy to get the celiac diagnosis because I thought I could fix everything...guess not.

Thanks!!

ravenwoodglass Mentor
ravenwoodglass
Posted

Rawr. You just confirmed my suspicions (which I didn't want to be true!). I've got a (second) lactose tolerance test in 2 days, so we'll see what that says. Like I said in the original post, she's also retesting the genetic bloodwork.

My doctor promised that 2 days was enough, but who knows. I think I'm going to start keeping a log again and see if there are any common denominators. I was so happy to get the celiac diagnosis because I thought I could fix everything...guess not.

Thanks!!

2 days was definately not long enough to produce a positive result. Your doctor really doesn't know much about celiac. If you are still having issues you could be getting cross contamination or you could have another intolerance. The most common are to dairy and soy. You could also have casien intolerance not lactose so even if the lactose tolerance tests show negative it might be a good idea to drop dairy for a bit and see if that helps.

What are you typically eating? If your not already going with fresh whole foods may help a bit. We can get enough cross contamination for us to have problems but still not enough to show up on blood work.

Don't let your doctor talk you out of continueing on the diet based on the recent testing. As was said it simply shows you are doing pretty well at keeping gluten out of your diet.

Takala Enthusiast
Takala
Posted

If you have been on a gluten free diet for a year and a half, eating gluten for TWO DAYS and expecting this to show up as celiac positive in either a blood test or a biopsy is ludicrous.

You didn't say what your living and work conditions are, nor if you are still getting cross contaminated. If you are still getting sick, then you either are likely getting cross contaminated with gluten, or you also have additional food intolerances, which are common. I saw you had mentioned in a previous post that you had a lactose intolerance test before that was negative.... the first thing you learn is that these tests are not the end all and be- all, and that your actual response to a food is the final say on whether or not you can tolerate it and should be eating it.

Because this gastro doc has now tested you as being "negative" you will now likely be branded as having IBS, (assuming the genetic test still comes out the same) and be told to take some sort of pharmaceutical concoction to treat symptoms, but this is not going to fix your ongoing, underlying problems, only mask it.

Roda Rising Star
Roda
Posted

I agree with Takala. You were diagnosed celiac. Being on a gluten free diet for 1 1/2 years and then having the biopsy/blood work (if doing the diet correctly) will give you a negative result. Two days on gluten is not going to change anything on the testing. What this proves is that you are doing good and that your current GI doctor is an IDIOT!!! Stay gluten free. If you are having issues then look at what you are eating and keep a diary. I did well for the first year gluten free then started having symptoms that lasted 8 months. I was at a point that the doc wanted to put me on steroids but I refused and went on an elimination diet. I found out that I can not tolerate some brands of gluten free products because of gluten free oat contamination. I also had to buckle down and get rid of some mainstream products. You could also have a secondary intolerence going on or an allergy. DON'T listen to the GI and go back to eating gluten.

lynnelise Apprentice
lynnelise
Posted

Honestly two days is not nearly long enough to test positive after so long on the diet. If you doctor promised you that it was then I seriously advise you get another doctor. This one appears to be completely clueless about celiac disease!

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Aeva Rookie
Aeva
Posted
  • Author

Thanks for the replies guys!

My doctor didn't say that I don't have celiac, she simply said the biopsy and serology came back negative. She wants me to continue of the gluten-free diet until we get some more answers in regards to possible causes of the ongoing issues.

It's possible that I could be getting CC, I eat out a fair bit and live with my non-gluten-free parents. The thing is, my symptoms usually pop up 3-4 hours after eating if I get glutened. The recent issues have been happening more quickly after meals, I'd say within a half hour or so. I can eat the same foods and sometimes get sick, sometimes not. There are certain things I know always make me sick (lemonade, coffee and watermelon, for example), but they have nothing in common.

I guess I'll just have to wait and see.

Thanks again guys!

Fairy Dancer Contributor
Fairy Dancer
Posted

Those foods (melon, lemonade and coffee) possibly have one thing in common...salicylates. Open Original Shared Link

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