So Confused About Results/endoscopy

[SuzyQ2]

Hello,

I hope someone can give me some advice as I'm very confused. I had some blood tests done about 2 weeks ago which indicated positive for anti tissue transglutaminase. I was then referred to a gastroenterologist who performed an endoscopy this morning. He indicated to me that he could see no damage and that a number of biopsies have been taken.

So now I'm not sure what is going on? Does it sound likely that I don't have celiac disease? I just wish they could hurry up and provide me with a diagnosis so I can move on with my life!

Has anyone been in the same/similar situation that provide me with some advice?

Thank you

[Roda]

  SuzyQ2 said:

Hello,

I hope someone can give me some advice as I'm very confused. I had some blood tests done about 2 weeks ago which indicated positive for anti tissue transglutaminase. I was then referred to a gastroenterologist who performed an endoscopy this morning. He indicated to me that he could see no damage and that a number of biopsies have been taken.

So now I'm not sure what is going on? Does it sound likely that I don't have celiac disease? I just wish they could hurry up and provide me with a diagnosis so I can move on with my life!

Has anyone been in the same/similar situation that provide me with some advice?

Thank you

I had a similar thing. My anti tissue transglutaminase was positive. Doc came out from my egd and told me that I had distal esophogitis and slightly abnormal small bowel. He said it really did not look that bad and would be suprised if it was celiac, but to wait on the biopsy results. The biopsy was positive. So that said, my understanding is that it is NOT that common to get false positive results on the blood work, but can get alot of false negatives. The biopsy can be subjective also. To accuratly diagnose celiac they have to look at the biopsy. Damage can vary (There is a Marsh Classification to describe the damage seen Open Original Shared Link. If the biopsy is interpreted as negative then you may not have enough damage to show or the the area that was biopsied did not show damage. (damage can be patchy). Hopefully you'll get the biopsy result soon. With positive blood work I would go gluten free anyway.

[ang1e0251]

It's not that easy to have positive blood results so if you're positive, I would get on the diet right away. Even if the biopsy turns out to be negative, it could just mean they didn't hit the right spot in your small intestine to sample from. Positive bloodwork is pretty conclusive.

[SuzyQ2]

  Roda said:

I had a similar thing. My anti tissue transglutaminase was positive. Doc came out from my egd and told me that I had distal esophogitis and slightly abnormal small bowel. He said it really did not look that bad and would be suprised if it was celiac, but to wait on the biopsy results. The biopsy was positive. So that said, my understanding is that it is NOT that common to get false positive results on the blood work, but can get alot of false negatives. The biopsy can be subjective also. To accuratly diagnose celiac they have to look at the biopsy. Damage can vary (There is a Marsh Classification to describe the damage seen Open Original Shared Link. If the biopsy is interpreted as negative then you may not have enough damage to show or the the area that was biopsied did not show damage. (damage can be patchy). Hopefully you'll get the biopsy result soon. With positive blood work I would go gluten free anyway.

Hi there,

Thank you for taking the time to reply to me. I just wish they would hurry up with my test results as I really feel like my life is in limbo.

I've tried that link but it doesn't seem to be working - could you please check this for me as I would be interested in reading this article. Thank you so much.

Kind regards,

Sue

[SuzyQ2]

  ang1e0251 said:

It's not that easy to have positive blood results so if you're positive, I would get on the diet right away. Even if the biopsy turns out to be negative, it could just mean they didn't hit the right spot in your small intestine to sample from. Positive bloodwork is pretty conclusive.

I agree with you but why then does the doctor recommend a biopsy?? I just feel like this diagnosis is taking so long. It's on my mind everyday and I'm struggling with the whole waiting thing!

Anyway thank you so much for taking the time to reply to me.

Kind regards,

Sue

[ravenwoodglass]

Since your endo is done go ahead and start the diet. You don't have to wait for the results. Your body may give you the answer berfore you get the test results. False negatives are not uncommon so even if the results are negative give the diet a month or two at least.

[JillianLindsay]

I'm in the exact same boat! Blood test was high-positive for two different markers (waiting for a copy so I know the details), endo was "abnormal" but not an obvious celiac case and so the DR took a lot of biopsies. I find out on August 25th the results of those biopsies as well as a lactose intolerance test and HLA typing.

I went on the diet immediately after my biopsy anyway and have found a great improvement It doesn't hurt to give it a try -- as others said, if you have a positive diet response you may have celiac disease regardless of the endo & biopsy results.

Good luck!

Jillian

  SuzyQ2 said:

Hello,

I hope someone can give me some advice as I'm very confused. I had some blood tests done about 2 weeks ago which indicated positive for anti tissue transglutaminase. I was then referred to a gastroenterologist who performed an endoscopy this morning. He indicated to me that he could see no damage and that a number of biopsies have been taken.

So now I'm not sure what is going on? Does it sound likely that I don't have celiac disease? I just wish they could hurry up and provide me with a diagnosis so I can move on with my life!

Has anyone been in the same/similar situation that provide me with some advice?

Thank you

[Roda]

  SuzyQ2 said:

Hi there,

Thank you for taking the time to reply to me. I just wish they would hurry up with my test results as I really feel like my life is in limbo.

I've tried that link but it doesn't seem to be working - could you please check this for me as I would be interested in reading this article. Thank you so much.

Kind regards,

Sue

I tried the link today and can not get it to work either. I read the article last night, but can't seem to find it again. Google Marsh classification/celiac disease and you will find some more articles.

[SuzyQ2]

  Roda said:

I tried the link today and can not get it to work either. I read the article last night, but can't seem to find it again. Google Marsh classification/celiac disease and you will find some more articles.

Thank you I shall try googling and see what comes up. I was talking to my husband last night about my symptoms etc and he said even though my endoscopy visually didn't show any problems, I've only had more severe symptoms for the last 2 months really so maybe it's not long enough to see any damage? And thinking back I didn't really eat alot of gluten before the two month period as I had been of a bit of a health kick. I don't know? Anyway I figured I'll keeping eating gluten products until I get my biopsy esults and if they are negative then go for another blood test?

I really don't know. I guess I'm hoping the biopsy results come back positive as at least then I have a diagnosis and can then adjust my diet.

Hopefully the results will be back next week.