NEWBIE!! recently diagnosed Collagenous Colitis

angy · Post by **angy** » Sat Jun 28, 2008 4:17 pm

Hi everyone!! Just joined tonight. Hope you are all well.

Recently diagnosed with collagenous colitis on friday 27/6 to which was a shock I can tell you. I was expecting to be diagnosed with celiac, due to my 8 months of hell with gluten food and waited 8 months for a colonoscopy and endoscopy . Turns out the biopsy has not diagnosed me with celiac. Why!! i am ill with gluten food.
When I asked the consultant about gluten he just said I t did not reveal celaic in the biopsy??and yes I have had blood tests also negative.

I have read that mc is related to the celiac gene. Any one help me out here im Gutted
Thanks

Looking forward to giving and sharing experiences..

JLH · Post by **JLH** » Sat Jun 28, 2008 4:23 pm

from another newbie. You've come to the right place. Start by reading the pertinent info here and asking questions. Tex probably knows more than your doctor......

I just saw that you are from Scotland. I always wanted to go to Scotland and Ireland.

angy · Post by **angy** » Sat Jun 28, 2008 4:31 pm

Thanks for the welcome!! nice!!
I changed the post lol!!
Yes Scotland is ok. you should go , you would love it!!

Post by **tex** » Sat Jun 28, 2008 4:32 pm

Hi Kittyquartz,

Welcome aboard. I'm sorry to hear of your diagnosis, but I'm glad that you decided to join us on our journey back to health. It's always nice to meet a new member from "across the pond", and I hope that you can find the answers that you need, here. People are in all stages of the disease here, from newly diagnosed, to those who have been in remission for several years.

Again, welcome to our online family.

Tex

JLH · Post by **JLH** » Sat Jun 28, 2008 4:34 pm

Just think that a week ago I didn't even know how to make a colorful welcome for you. I'm learning a lot.

Dinner time.....be back later.

angy · Post by **angy** » Sat Jun 28, 2008 4:37 pm

Hi Tex!!

I did the posting lol!! i just edited it above ...
Been a while since i used forums..Ill get back into it.

I just feel no -one understand what Im going through at the moment. especially family and friends. I work in the mental health field so i recognise my own mental state of mind just now. Just wish every 1 else would.

JLH · Post by **JLH** » Sat Jun 28, 2008 4:37 pm

Check out www.enterolab.com

We DO understand as you'll find out.

angy · Post by **angy** » Sat Jun 28, 2008 4:38 pm

thanks for the lovely colours that cheered me up lol

angy · Post by **angy** » Sat Jun 28, 2008 4:39 pm

I went there to Enterolab (website) I copied the information. it clicked with me completely... They see as I do lol

Post by **tex** » Sat Jun 28, 2008 4:49 pm

I was like you - I really thought that I had celiac sprue, (I still do, for that matter. LOL). It turns out that the type of gluten sensitivity that we have, still affects the small intestine, though not quite like celiac disease, but it affects the colon much more.

Due to the fact that most of the gluten, (gliadin), antibodies are produced in the colon, rather than in the small intestine, not enough of them get into the bloodstream to be detected by the classic celiac blood tests. Therefore, we almost always test negative to the classic celiac tests. There is a lab in Dallas, Texas, called Enterolab, which offers a stool test that can accurately detect gluten antibodies, (and several other antibodies, such as casein, soy, etc.), in stool samples. That's where most of us get our tests, if we want to verify by testing, that we are gluten sensitive. Obviously, though, the test isn't really necessary, since we can test ourselves by cutting out gluten, (and any other food sensitivities), and if doing so resolves the symptoms, that proves that the sensitivity exists.

Many of us have also done gene testing at Enterolab, and yes, many of us have one or more celiac genes. There are also several other genes that indicate gluten sensitivity, but they are not related to celiac disease. If you want to see how some of us have tested, we have the results listed here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645

Many of us seem to be more sensitive to gluten than the average celiac.

Tex

P S I see that Joan has already brought the Enterolab site to your attention.

P P S Regarding people understanding MC - we have found that no one truly understands what we go through with this disease, unless they actually have the disease. That's one of the things that makes us sort of an online "family" - we understand each other, because we've been there, done that.

angy · Post by **angy** » Sat Jun 28, 2008 4:50 pm

Thank you tex

Ill take a look.

angy · Post by **angy** » Sat Jun 28, 2008 4:54 pm

Tex
Is there a seperate blood test for gluten sensitivity other than the main celiac sprue blood test.

I have no idea if my parents had celiac they are gone to the other side. I have no idea about other family members either.

Post by **tex** » Sat Jun 28, 2008 5:05 pm

The celiac blood tests, (used these days), involves testing for anti-endomysial antibodies, and/or antitissue transglutaminase antibodies. In order to test positive to one or both of these tests, you have to be a "full-blown" celiac, with significant villous atrophy.

The stool tests, (at Enterolab), by contrast, are very sensitive, and can detect gluten antibodies before the disease fully develops, and long before the antibodies reach a level where the classic blood tests would detect them.

The gene tests will tell you exactly what kind of genes, (regarding gluten sensitivity, or celiac disease), that you inherited from your parents, if you are interested. You get one gene from each parent, and you give one gene to each of your offspring.

Tex

P S I like that avatar.

angy · Post by **angy** » Sat Jun 28, 2008 5:11 pm

ty Tex

you made that very clear within 2 minutes lol!!!

I understand better on that level now. I
guess what!! I saw my gp 2 days before my biopsy results as I needed a sick note for work.. When I told him about my symtoms and that I was convinced I was celiac (not my regular gp) he said.... "what if the biopsy reveals nothing!! what will you do... you wil have to deal with it.. I was stunned..I felt like saying.. how would you feel if it was you!!! Now hes in for a shock with the outcome huh!!

angy · Post by **angy** » Sat Jun 28, 2008 5:13 pm

Yes cool avatar from this site !!! LOL :cool: