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Confused And Annoyed

Guest sammya

By Guest sammya
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest sammya
Guest sammya
Posted

Hi everyone,

I am hoping some one here might be able to help me........

I had blood work done 2 years ago to check for coeliac(celiac) disease as i had low iron levels, which was caused by my extremely heavy menstal cycles which were fixed via a hysterectomy. My blood work for coeliac(celiac) came back at 53 i think it was and i was told it was positive. Another doctor told me to wait and see if symptoms showed as this was not a definate diagnosis.. Within 8 months doctor re checked my iron and vitamin B12 blood work up which was all normal, so he said i couldn't possibly have Coeliac(celiac). Over last 6 months i have been having reflux problems, so doctor ordered TTG bloods to be done, these came back normal....

So, she sends me to a gastroenterologist who performs an gastroscopy to check for ulcers, he decides to take some biopsies from the duodenum while he's at it and the following is what the biopsy results were:

The biopsy comprises duodenal mucosa in which there is focal blunting of villi associated with an increase in intraepithelial lymphocytes and lamina propria round cells. The appearances are those of a mild mucosal lesion. No giardia parasites are identified and there is no evidence of granulomatous inflammation.

Now, the reason i am confused is because i saw my GP a week after biopsy was done and she told me results were conclusive coeliac(celiac) disease, my gastroenterologist told me it was mild coeliac disease, But another GP read to me the letter that my Gastro had sent to my file and it states quite clearly that he holds reservations on the diagnosis of Coeliac disease........ :unsure:

Can anyone tell me if there is another medical problem that could cause these biopsy results as i am now not sure what to think..

I am however on Gluten free food since biopsy results for the last month, and i feel no different.

Thankyou

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nikki-uk Enthusiast
nikki-uk
Posted
Hi everyone,

I am hoping some one here might be able to help me........

I had blood work done 2 years ago to check for coeliac(celiac) disease as i had low iron levels, which was caused by my extremely heavy menstal cycles which were fixed via a hysterectomy. My blood work for coeliac(celiac) came back at 53 i think it was and i was told it was positive. Another doctor told me to wait and see if symptoms showed as this was not a definate diagnosis.. Within 8 months doctor re checked my iron and vitamin B12 blood work up which was all normal, so he said i couldn't possibly have Coeliac(celiac). Over last 6 months i have been having reflux problems, so doctor ordered TTG bloods to be done, these came back normal....

So, she sends me to a gastroenterologist who performs an gastroscopy to check for ulcers, he decides to take some biopsies from the duodenum while he's at it and the following is what the biopsy results were:

The biopsy comprises duodenal mucosa in which there is focal blunting of villi associated with an increase in intraepithelial lymphocytes and lamina propria round cells. The appearances are those of a mild mucosal lesion. No giardia parasites are identified and there is no evidence of granulomatous inflammation.

Now, the reason i am confused is because i saw my GP a week after biopsy was done and she told me results were conclusive coeliac(celiac) disease, my gastroenterologist told me it was mild coeliac disease, But another GP read to me the letter that my Gastro had sent to my file and it states quite clearly that he holds reservations on the diagnosis of Coeliac disease........ :unsure:

Can anyone tell me if there is another medical problem that could cause these biopsy results as i am now not sure what to think..

I am however on Gluten free food since biopsy results for the last month, and i feel no different.

Thankyou

Hi and welcome :)

I am not sure why :unsure: but some doctors are hesitant to give a dx of coeliac for some reason.

When my hubby's biopsy results came back the doc said ''There is villous atrophy - so you might want to try going gluten-free !!!!!!!!!!!''

WHAT?? :huh::huh:

OK, what more proof do you need? - you've had a positive blood - positive biopsy = COELIAC DISEASE :D

Just to add, it can take a while to feel any different. It took my hubby several months before he felt any better.

If you think about it, it took a while for the damage to get there - it will take a little time to heal.

Good to hear you are sticking to being gluten-free though :)

BTW there is however another condition that can cause blunted villi (called 'Tropical Sprue')

I remember the docs asking my hubby if he'd been to any far flung lands (but he hadn't! :) ) and as you had no parasites I would think that was very unlikely. :)

hathor Contributor
hathor
Posted

Seems to me it is a question to ask also of your gastroenterologist. He says one thing to you and another in a letter to your file? If he has reservations as to the diagnosis, he should do you the courtesy of expressing them and explaining on what such doubts are based and what you are supposed to do in the meantime.

I'm curious -- did you have gene testing, too? If you did and didn't show up with either of the genes that much of the medical establishment thinks are necessary for celiac, this could account for the equivocation. The results of the blood testing may be the source of the uncertainty too.

It can take longer than a month to feel better, if gluten is the source of your problem.

Googling, I found this: Open Original Shared Link

This indicates that peptic ulcers present with villous blunting as well. You might do your own search and see if you find any other conditions, or whether such an ulcer would give you the symptoms you've had. Here is one site to get you started:

Open Original Shared Link

Have you been tested for H. Pylori?

Guest sammya
Guest sammya
Posted

I'm curious -- did you have gene testing, too? If you did and didn't show up with either of the genes that much of the medical establishment thinks are necessary for celiac, this could account for the equivocation. The results of the blood testing may be the source of the uncertainty too.

Guest sammya
Guest sammya
Posted

Hi again,

Just writing to let you know that i have just received the gene results for myself and my 4 children...

I came back positive for DQB1*02(DQ2) and DQA1*05 and i also tested positive for DQB1*0302 (DQ8). I think that pretty much answers the questions i had over the diagnosis.... My 6 yr old daughter who is showing symptoms gene test came back positive for DQB1*02 (DQ2) and DQA1*05.

I have a paediactric appointment for her on Wednesday so i going to take her results with me for the doctor to view......

However, my other 3 children carry the DQB1*0302(DQ8)

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