Diagnosis Confusion

[jaxonweb]

My doctor told me about a month ago that he thought I had Celiac, and after reading about the symptoms I thought the same. However I had an EGD yesterday and afterwards the doc said that it was very unlikely that I have celiac. Now I am really upset, because I am back where I started, not knowing what the problem is. He said he would take multiple biopses, but how can I know for sure how many he took? Now he wants to do an ultrasound. Are there any other test that are more reliable?

Also, what are some other problems that might have the same symptoms as celiac?

[Jnkmnky]

Did you have the blood test?

[judy05]

My doctor told me about a month ago that he thought I had Celiac, and after reading about the symptoms I thought the same. However I had an EGD yesterday and afterwards the doc said that it was very unlikely that I have celiac. Now I am really upset, because I am back where I started, not knowing what the problem is. He said he would take multiple biopses, but how can I know for sure how many he took? Now he wants to do an ultrasound. Are there any other test that are more reliable?

Also, what are some other problems that might have the same symptoms as celiac?

<{POST_SNAPBACK}>

You could have gluten sensitivity. My biopsy was negative, the villi were not damaged, and the gene test was negative, but I still can't tolerate gluten or milk.

My GI doc says there is no reason why I can't eat gluten, but it makes me sick everytime I eat it. I did a food sensitivity test thru York labs and it came back positive for cow's milk, egg whites, corn, yeast and of course wheat. It was not positive for oat, rye, or barley gluten. I am very careful but I can eat organic eggs, cheddar cheese and some corn with no problem. You have to go with what your body is telling you. Hope this helps.

As far as bloodwork, my IGA was 75 but dropped down to 30 after going gluten-free. I haven't had it tested since. A positive reaction to the diet is enough for me, I don't need a diagnosis.

[jaxonweb]

I have not had a blood test yet. My GI said it was not as reliable as the EGD. However I think his next plan is to do the blood test and an ultrasound.

After learning about the gluten-free diet I have paid more attention to how I feel after I eat, and was a little curious as to why some gluten foods made me sick and some didnt. For example... I go to Einstein bagels often. When I eat their cin-raisin bagel I feel bad, but if I eat their blueberry bagel I am fine... eventhough they both have gluten.

How do you go about taking a food sensitivity test?

[kabowman]

My EGD was negative and I refused to go back onto gluten for any blood tests - however, this does NOT mean that you don't have food intolerances. I agree with previous post, go with what you body tells you. My docs all seem pleased that I have found all the foods that bother me, even if I don't have a positive celiac disease dx. I am much happier and healthier, even if I do have to be super careful...I'm not sick anymore.

[skbird]

There is more to gluten intolerance than intestinal damage/enteropathy. I have all the stomach/gut reactions but no malabsorption, no Celiac gene, but I do have other obvious gluten intolerance symptoms. There is also neurological presenting gluten intolerance.

It's also possible the doctor didn't take enough samples when he did the endoscopy. That happens sometimes, from what I've read.

Gluten intolerance is nothing to sneeze at, just because it's not Celiac. It can lead to other auto-immune diseases. I, for example, am looking at a possible lupus diagnosis this Friday when I go to my rheumatologist. No one in my family has this or anything like this (lupus, other connetive tissue diseases) and I am the only one with obvious gluten reactions, though I have two genes linked to intolerance, so both my parents must have one each, mimimum.

If you feel better on a gluten free diet, then you should stick with that. Not being sick is worth the sacrafice!

Stephanie