Endomysial Antibody Result

[Boffin]

Hi All!

I posted last week and got some helpful answers and have since spent a lot of time browsing and learning more from this mine of information!

The information that I got about my blood test result up to now had been very vague. I was just told by letter "coeliac serology positive" but my GP mumbled about such tests being vague and inconclusive etc etc.

Anyway, Monday this week I decided to take control a little further whilst waiting for my "confirmatory jejunal biopsy" (agh!) and phoned the hospital that did the test, in order to find out what test was done and "how" positive it was.

I was told that I had the test for Endomysial Antibodies, that my result was "significant positive" and that I had 300 titers or titres or something.... Much browsing since has led me to believe that this test is pretty accurate (something like 97%?!).

A little further browsing on here today has revealed a handful of posts of people saying stuff like "endomysial antibodies do not become positive until villous atrophy is well under way".

I am now feeling rather alarmed! Here I am, age 30 and feeling that I've done major damage to my insides AND I have to continue doing major damage while I wait for the biopsy! I don't feel really, really ill, but I think I've almost got used to feeling like this (stomach aches daily, diarrhea daily, bloating, windy, extremely tired etc) - it's become the "norm". I was told IBS by my doctor and after a while just accepted it! Strangely, the thing that sent me requesting tests was pain low on my right side, coupled with the digestive issues, which made me fear ovarian cancer. I now think, and hope, that this pain is just painful ovulation, but in the mean time I might well have got to the bottom of why I've felt grotty for years!

Anyway, I'd just be interested in your thoughts on my EMA result as I'm worrying about the damage and the chances of cancer, and whether I can "fix" myself still at age 30.... and loads of stuff really!

Thanks in advance for your help. This is a great site!

[happygirl]

The vast majority of Celiacs that go on a gluten free diet have their chances of most cancers lessened dramatically. Its those with undiagnosed or untreated Celiac that have an increased risk. Once you go gluten free, your body starts to heal, and rebuild itself. Your intestines regenerate every 3-4 days...so for most, the damage is NOT permanent. (for those that it is, they usually have refractory sprue, but that is pretty rare.)

Some of us were dx'ed as kids, some as teens, adults, elderly....etc.

I'd say your high EMA is pretty indicative

[Boffin]

Thank you for your reply Happygirl.

It's amazing to hear that our intestines renew themselves every three to four days! Our bodies really are incredible things aren't they. I just feel so sad that I've been screwing mine up for the past years.

I find this site a very helpful and informative place, and with very friendly people too which is great. I'm sort of happy to join your club! I have to keep reminding myself that things could be sooo much worse. Yesterday on the news there was a feature about children with cancer which brought tears to my eyes and reminded me to be grateful for my 30 good years of life and the prospect of getting better in the future, rather than moping about. I have to admit that I still feel sad about the things that I will have to leave out but I will learn to find other things.

One of the things that made me feel most sad was the feeling that this would detach me from other people in a way. It probably sounds really silly, but stuff like not sharing margarine, jam, preparation areas etc with gluten-eaters, and not being able to be part of the friendly "Ooh, this is nice, try a bite/sip" sort of group banter makes me feel like I won't be so much part of things! That's daft, and makes it sound as though I'm always tasting other people's food, which I'm not. The big thing though is having to be careful about kissing my husband! I don't feel that I can impose gluten-free on him too. The poor guy's been through enough of my health hassles in our 7 years of marriage! Just how careful will I have to be about kissing him?!