Am I Screwed ? Longtime Undiagnosed Celiac

[marciab]

Hi All,

I was hoping to see my question answered in the other post about being normal, but I didn't see what I was looking for. So here goes..... What are my chances for getting cancer (stomach, intestinal, etc.), from living with undiagnosed and therefore untreated celiac for who knows how long?

I am 50 and have diverticulitis, colon polyps, erosive gastritis, hiatal hernia and have been disabled with CFIDS and Fibro since 1990. On top of feeling crappy most days, I always have some new medical problem to deal with.

My mother died in 2001 from liver cancer which no one caught until the tumor was 5 centimeters because they just kept telling her that she had a stomach virus. And by then it was too late.

I'm leary about asking my doctor because I'm afraid I'll be seen as being over dramatic. But after what happened to my mother, I really don't want to wait too long.

What do you think ? What would you do ? thanks marcia

[Guest nini]

Marcia, if you are on the gluten free diet, after a while your risk of cancer should return to that of the average population. With a family history though, I would ask your Dr. about it, and I don't think you are being overly dramatic, just pro active in your health. Good luck with it and keep us posted!

[marciab]

Thanks. I like the idea of being pro active. I hope my doc looks at it the same way. I'm embarrassed to call them at this point cause they know my voice. They are supportive, I am just overly sensitive from years of being considered a hypochondriac.

I was hoping that since my stomach problems, the pain, bloating, "D" and "C" go away if I am careful of what I eat, then chances are I don't have anything to worry about.

What do u think ? Marcia

[tiredofdoctors]

I think pro-active is the way to go here, too. I'm only 43, I'm not a celiac (have Gluten Ataxia), but when I had my endoscope, they also did a colonoscopy. I only had 2 polyps, and they removed those. If you know you have them, I think it's time that they go bye-bye. They are the precursor to colon cancer. Mine were non-precancerous, which was good, but it also means that I'll have to have a scope more frequently, and certainly not wait until I'm 50. I think if you present your conditions and symptoms in an organized, focused format, the doctor won't have a reason NOT to listen to you and not to take you seriously. I'm sending good luck your way, and praying for you . . . hugs, Lynne

[marciab]

Thanks ... I know the colonoscopy report said that the two polyps biopsied were not malignant. I'm not sure if he removed all that he saw. I was just in shock that he found anything. That was in Aug 2004 and I am not due to get another colonoscopy until 2007, so that sounds promising.

There are so many parts to the digestive system, how would they check them all ? Is there a blood test ? marcia

[chrissy]

i think i read that an adult celiac, after they have been on the gluten free diet for (either 2 or 5 years) anyway.....their risk of other diseases is supposed to return to normal. i think for a child, their risks return to normal alot sooner.

christine

[Timber4est]

Well, as far as cancer goes, there have been some studies in the area with people having cancer verses celiac patients with cancer. There are several websites where some of the research has been posted, one such website is located at: Open Original Shared Link

Know your disease and know your option and find a doctor who understands this disease (not an easy thing in some regions).

As for hope, keep your chin up! I will be 40 in April and have suffered from the disease for as long as I can remember, at very least since the age of 5. I only found out a few weeks ago that I am positive for Celiac Disease, so I have suffered for over 35 years. Like you, my medical history reads like a long list of "sickly".

I have thyroid Disease, liver disease, rheumatoid arthritis, have broken many bones in my body, torn muscles, tendons and the like in accidents others would not have been injured in. I have the typical complications like osteoporosis, suffered from miscarriages, even had a hysterectomy at age 25 in my doctors attempt to cure me of all my pain, seizures, I stopped growing at age 12 and on and on the list goes.

I can tell you that I was partially gluten-free prior to DX as I simply knew that certain foods didn't make me feel so sick. I have been totally gluten-free for two weeks only and am already realizing relief in my trips to the bathroom and arthritis pain. I think the rapid result in this area was that my diet was mostly (not fully) gluten free prior to dx.

Anyhow, there are lots of books in the Universities medical library and most of these schools will allow you to visit their libraries for the day with identification to do research. I even hired a med student to translate the "lingo" that I didn't understand for the price of $25 per day (3 hours) so that I knew better in some of the studies what was going on and being spoken about.

Deborah