Celiac Newbie

[jrbeek24]

Hello all, I am a 22 year old male who was diagnosed with Ulcerative Colitis when I was 16. Since then i have had quite a few bouts with the UC and some other GI problems. Earlier in '05 I was diagnosed with Gilbert Syndrome(affecting bilirubin in my liver) and just this week had a colon/endo-oscopy done and now my doctor believes I may have Celiac Sprue disease as well. Talk about exciting eh? Ive been doing a lot of research to try and find all possible info on all three of these diseases and especially on this new one, Celiac Sprue. My question(s) to all of you are, how were you diagnosed with the disease? My doctor mentioned blood tests and a CT Scan. Do any of you have UC, Gilberts, or any other GI problems also? Any other feedback/advice for me? I appriciate your comments very much. Thanks! J. Buechner

[lovegrov]

I was diagnosed by a panel of blood tests and then a biopsy. Don't know about using a CT. I didn't have any other gastrointestinal problems.

richard

[RiceGuy]

I had been going to all sorts of doctors. None of them got even close to finding the cause of my sufferings. I basically stumbled into it myself. I have no plans to get diagnosed, as the gluten-free diet is working, which is what I'd do no matter what the test results indicated.

There seems to be a lot of people who get diagnosed with various diseases, then later are diagnosed with celiac disease. I can't help but wonder if celiac disease is the actual cause of most/all the other problems. Especially when celiac disease is so often mistaken for so many other things.

When going gluten-free, and finding the other health issues subside or disappear, it would be a true indicator IMHO.

[nettiebeads]

I was dx'd through diet challenge 9 yrs ago. I agree with Rice Guy, in that if you do the gluten-free diet, and your symptoms disappear, what else do you need? And yes, many of your other gi problems may lessen and even disappear if gluten is your problem and it is eliminated from your diet. Celiac is the great imitator of autoimmune diseases. With 200 symptoms that can appear in so many different combinations and to varying degrees, it's not surprising it is overlooked in this country. That and the fact the medical community is geared to actively treating problems via drugs or other proscribed regimes, and this disease is treated by diet alone, drs are quite often outside their comfort zone with celiac disease.

[jerseyangel]

About 2 months before I was finally Dx, my bilirubin was elevated (I was not DX with Gilberts). I had blood work done in early Nov., after 6 months gluten free, and the level returned to normal. Actually, the same was true of a low white blood count and a very slightly low thyroid--they all returned to a normal number. I was pleasantly surprised, to say the least. The number of issues in the body affected by gluten continues to amaze me.

[KaitiUSA]

I was diagnosed just by blood tests. I had a complete panel and a celiac gene test run on me. I don't think I have heard of CT scans for detection of celiac. Some doctors will just use the more accurate blood tests for diagnosis and others do both the blood tests and then a biopsy.

Did you get an endoscopy done? If that indicated celiac then you have it because a biopsy is considered the "gold standard" for diagnosis. However, it can only rule in celiac ...it can not rule it out. With a positive one you have it ...with a negative one you still could have it.

Celiac is really not bad once you get used to the diet change. There is a lot we can eat and once you find the good specialty items to replace the things you can't have it all seems fine.

Email me anytime if you have any questions

[jrbeek24]

hey all, i just wanted to thank you for your replies, i appriciate it and will just have to wait until monday to see whats going on. I have already tried to start the gluten-free diet to see how that works. Hope you all had a great thanksgiving...

[Carriefaith]

I have already tried to start the gluten-free diet to see how that works.

If you go gluten free before getting your tests done, they could come back false negative. You must be consuming gluten in order for the tests to be accurate.

If you do end up having celiac disease, don't hesitate to ask for meal ideas, recipes, and gluten free product lists.

[stef-the-kicking-cuty]

I was self diagnosed and got a confirmation from my doctor with a blood test later.

I can't help but wonder if celiac disease is the actual cause of most/all the other problems. Especially when celiac disease is so often mistaken for so many other things.

I for my part do believe this. Let's just wait a few years and they will find out...

Celiac is the great imitator of autoimmune diseases. With 200 symptoms that can appear in so many different combinations and to varying degrees, it's not surprising it is overlooked in this country. That and the fact the medical community is geared to actively treating problems via drugs or other proscribed regimes, and this disease is treated by diet alone, drs are quite often outside their comfort zone with celiac disease.

Celiac is also called the big chameleon, because of the huge amount of symptoms it can hide under.

And the "treating with drugs"-problem is, what makes me mad . You should fight the problem at the source and not with a pill. That's why we actually can be glad, we have celiac, because there is no pill for it. WE DO fight the source = food.

Hugs, Stef

[Claire]

Hello all, I am a 22 year old male who was diagnosed with Ulcerative Colitis when I was 16. Since then i have had quite a few bouts with the UC and some other GI problems. Earlier in '05 I was diagnosed with Gilbert Syndrome(affecting bilirubin in my liver) and just this week had a colon/endo-oscopy done and now my doctor believes I may have Celiac Sprue disease as well. Talk about exciting eh? Ive been doing a lot of research to try and find all possible info on all three of these diseases and especially on this new one, Celiac Sprue. My question(s) to all of you are, how were you diagnosed with the disease? My doctor mentioned blood tests and a CT Scan. Do any of you have UC, Gilberts, or any other GI problems also? Any other feedback/advice for me? I appriciate your comments very much. Thanks! J. Buechner

I don't know what others here will say but I can't see any purpose for a CT. It' simply not an appropriate tool. Blood tests are not always reliable, especially if analyzed in local labs. I would vote for Enterolab's Stool Sample Test. Claire

[Lisa]

J:

DO NOT GO GLUTEN FREE UNTIL YOUR TEST RESULTS COME IN. THIS IS VERY IMPORTANT. EAT BREAD AND PIZZA AND WHATEVER YOUR WANT TO, JUST DON'T GO GLUTEN FREE UNTILL YOUR TEST RESULTS COME IN.

This is important for accurate testing. Keep us posted and let is us know your results. There is a gold mind of information here, when you are ready.

Lisa B.

[darkangel]

I was diagnosed with irritable bowel syndrome in college, then "upgraded" to a dx of ulcerative colitis in my mid 20s. The first GI I saw (I've worked my way through six so far) mentioned celiac disease to me as a possibility. She advised me to avoid wheat for a week or two and see how I felt. Of course, I didn't feel any different, so she told me I didn't have celiac disease.

As others have said, you must be on gluten if you want reliable test results. However, if you do decide to go gluten-free after your tests, you must be aware it's much more than just avoiding wheat. Use this site to educate yourself on all the sources of gluten and the hidden, unexpected places it lurks. Also, be aware your problem could be more than just gluten. Dairy is another primary offender and some folks with UC and Crohn's have problems with all grains.

My personal "gut feeling" is my problems are all related. I was told IBS and UC were two separate conditions and that I now have both. I say BS. IBS is your body trying to tell you something. When you don't get to the bottom of the problem and your doctor simply attempts to suppress the symptoms with antispasmodics and antianxiety meds, your symptoms worsen and you're diagnosed with UC, Crohn's or celiac disease.

I recently found a site for a doctor who's had a lot of success treating both IBS and inflammatory bowel diseases. Check it out at Open Original Shared Link

With a UC diagnosis, you may also want to look into the Specific Carbohydrate Diet, which is not only gluten free, but completely grain free. Open Original Shared Link

I'd also highly recommend you try Custom Probiotics. I've tried numerous probiotics and saw little or no improvement. I even tried Primal Defense and, after an initial improvement, it made me very ill. In retrospect, I believe it was because it contains wheatgrass, but that's another subject. Anyway, of everything I've tried, Custom Probiotics' six strain blend is the only one that was effective. I give it most of the credit for the two-three years of "remission" I enjoyed after about five years of being deathly ill. The owner is a biologist/chemist who himself suffered from candida overgrowth. I've found him to be extremely helpful. Open Original Shared Link

I'm sorry this is such a long post, but I want to encourage you to do the research and take control of your health. All the GIs I've seen have told me I have a chronic disease, I would never be well again and there was nothing I could do but take my meds like a good little girl and wait for the day I'd need to have my colon removed, at which point I'd be "cured." When I regained glowing good health, on my own, none of them ever questioned my success or took any interest in what I was doing.

So, don't let anyone discourage you. The answers are out there. Feel free to email me if you want to talk... angela_grace@lycos.com.