Just confirmed I have full blown Celiac disease!

[tlras]

Well I just had my second GI appointment since my diagnosis in July and he was awake and pleasant this time. Probably because he was training a nurse and so he spent a lot of time with me.

Back in July, he diagnosed me with LC. I had asked him if I had Celiac since my bloodwork showed I did, but he said Duodenum was normal. Unfortunately, I did not get a copy of the test results as their printer wasn't working. He was in a foul mood at the time and was skimming the computer records for my results. I was a little shocked but happy to hear that Gluten wasn't attacking my Duodenum at this time. WRONG!! I got my results handed to me today and he did tell me I had Celiac disease after all! Not that it really matters since my body reacts to gluten and I need to stay gluten free forever, but this last months I just assumed that no visible damage on a biopsy was a good thing, though Tex did point out to me that I could have Marsh 1 Celiac and maybe changes in my Duodenum were so subtle that it wasn't picked up on a biopsy. Here I've been telling everyone that gluten seems to be attacking just my colon.....so wrong I was. I can't believe he totally skipped over those results at our last appointment.

So here were my results of my colonoscopy/endoscopy:

Small bowel, biopsy
- Small intestinal mucosa with chronic inflammation and focal acute inflammation
- Mild villous blunting present (meaning Celiac disease....can't believe he missed this!)
- No increase intraepithelial lymphocytes (Now, why, with all the inflammation do I not have increased lymphocytes?) Tex?

Gastric antrum, biopsy
- Minimal superficial chronic gastritis
- No intestinal metaplasia, dysplasia, or malignancy seen
- No. H. pylori-like organism

Colon, random biopsy
- Colonic mucosa with increased intraepithelial lymphocytes suggestive of lymphocytic colitis (The only thing he even mentioned during our last visit).

Celiac blood panel:

Deamidated Gliadin Peptide Antibody, IgG of 12.0 EU/ml....should be less than 4.9 EU/ml
Deamidated Gliadin Peptide Antibody, IgA of 5.5EU/ml.....should be less than 6.1 EU/ml so, Yay on that.
Anti-Human Tissue Transglutaminase IgA ELISA of 8.6 U/ml.....should be less than 10.3 U/ml, so another Yay on that one.
Anti-Endomysial IgA IFA showed Positive....no range was given.

So there has been improvement on my bloodwork since going GF July 1.

He also advised me to start tapering off the Pepto (it's my 7th week) as it's not good to take long term. I can however, take it occasionally if need be. He said I could go back to Imodium, but he says Pepto actually heals the gut whereas, Imodium just controls the symptoms. Interesting. Too bad you can only take the stuff for 2 months! He does prescribe Entocort as last resort but wants to see how I do with the occasional Imodium and diet changes. Yay on that as well.

I'm just so glad I got more answers today. I'm hoping the Pepto will knock me into remission after all these diet changes, but realize there may be a lot more tweaking to go.

And I get to start reading Tex's book tomorrow! Woohoo!

Terri

[JenniferS]

Terri, it's funny how we often know but doctors often don't believe us. oy. I'm glad you got clear answers! And it sounds like you are very educated. I am such a newbie at this. :) I do have a question--are colonoscopies frequent occurrences for those with LC? (I hope not. They are quite pricey!!)

[tex]

- No increase intraepithelial lymphocytes (Now, why, with all the inflammation do I not have increased lymphocytes?) Tex?

In the Marsh 1 stage, intraepithelial lymphocytes are present at the tips of the villi (in elevated numbers). As the tips of the villi begin to die, the lymphocytes will presumably move deeper, into the lamina propria layer, where they continue to generate inflammation. Mild villus blunting would be classified as a Marsh 3a level of damage.

Tex

[tlras]

Thanks JenniferS. I have learned a lot from this forum and doing lots of Internet research. Once you get a disease like this, you want to get as educated about it as you can. I even researched it before I even got a diagnosis so have been researching since May.

You are right about colonscopies being pretty pricey. We have good insurance but had to fork out 20% of it and it still was a lot. I always thought they were 100% covered but apparently with my insurance that's only if it's a preventative test and you are the age of 50 or over. I'm was 45 with big time symptoms so I guess I didn't qualify for the 100% coverage.

From my understanding, most doctors will not do frequent colonoscopies for LC. Maybe for Crohns or UC. Unless you develop bleeding or other symptoms, then a colonscopy is usually not warranted. My doctor hasn't mentioned another Colonoscopy so I'm very happy with that. And I don't think he will for awhile. I think the time frame is usually 3 to 5 years but Polly or Tex would know more about that. I do however, believe I will be getting another endoscopy in the next year or two as I was just diagnosed with Celiac disease.

Again, welcome to our forum. You will be giving newbies advice before you know it!

Take care,

Terri

[tlras]

Thanks Tex! I know I will get all these answers once I read your book. And I know it takes awhile for the anti-gliadin antibodies to go down to normal. Talking a few years I suppose.

Terri

[tex]

And I know it takes awhile for the anti-gliadin antibodies to go down to normal. Talking a few years I suppose.

Blood levels should decline to normal levels within 2 or 3 months, for most people. (I see that your IgA level has already returned to normal). IgG antibodies represent mature reactions (chronic reactions), so their levels are slower to rise, and slower to return to normal, but they should return to normal after a few months (with blood tests).

IgA antibodies to gluten (anti-gliadin antibodies) will persist at positive ELISA test result levels in stool samples for at least a full year, for virtually everyone who initially has a positive test result. Results of stool tests will still be positive after 2 full years for most people who had more than a slightly-elevated initial level of anti-gliadin antibodies. So presumably, some people who have high initial antibody test levels for a stool sample, might still show positive anti-gliadin antibody IgA test results after 3 or 4 years, without ever ingesting another molecule of gluten.

Tex

[tlras]

Thanks Tex for all your knowledge. I was a little upset when I heard the news from the doctor and I totally went blank on what to ask him about Celiac. I only had questions in regards to my LC....geez! A little overwhelmed right now. Now that I know my villi are being attacked I'm going to have to be very strict with being gluten free. Which means giving up my lipstick and chapstick. I also may need to give up the few restaurants I go to as well because the risk of contamination is just too great....though I don't seem to react to the restaurants I go to except maybe for one.

I now have LC, CD and Hypothyroidism.....wonder what will be next!

Thanks again,

Terri

[Martha]

Dear Terri,

I'm sorry that you have celiac disease, but the silver lining is that eliminating gluten will help both the CD and LC.

Let's hope that nothing is next! Three autoimmune diseases is plenty!

Love,
Martha

[tlras]

Thanks Martha! At least I've been GF for 4 months now and hopefully will prevent any further damage.

Terri