Anyone with Celiac Disease?

lynda

lynda

Cathlete
Hi! I was wondering if any of you ladies out there have celiac disease. I don't think I have it, but here's the deal. I was having a lot of stomach trouble about 2 years ago, and they did a blood test and found that I carry the celiac antibody (I'm not sure if this is the correct term). The thing is, they did an intestinal biopsy, and it came back fine. So, while I don't currently have the disease, my doctors (and there are a lot of them) think that I will begin to show symptoms at some point in the future. Lately, my stomach has been giving me trouble again, but not your typical celiac symptoms. I was wondering if anyone had out-of-the-ordinary symptoms on their road to diagnosis. Hope this makes sense. I dread going back to the team of doctors for the barrage of tests only to find nothing again! Not to mention all those medical forms and insurance paperwork . . .
 
funny you should mention that...I was just beginning to wonder if I have it. I've read that it can show up at any time in one's life and that there may be a hereditary component. I've had stomach problems since high school and I've been told that it's due to a variety of things (no tests for CD). However, I recently came across their website and discover I've got more than just one of the symptoms.
anyway, from what I've read, the only 'cure' is to avoid gluten products - there's a huge slew of these (lots of baked goods, prepared foods, vegetarian foods). Just do a seach on either Celiac Disease or gluten free.
btw, one of my friends was recently diagnosed with CD. She took a test that she ordered online (very expensive)from Enterolab.com. She had a bunch of the symptoms - basically felt terrible.
I'd be interested to hear on what you decide to do. Feel free to e-mail me.
 
Did you try the gluten-free diet? I would read more about this, there is a support group you can subscribe to, and there are thousands of people on it. If you are in the US, a large research study was conducted and it found Celiac to be underdiagnosed in the US. I was told, by a top celiac researcher, that during the biopsy there should be multiple samples taken, as some parts of the tract can be effected and some not.

It's important to get a firm diagnosis, because not only does this disease increase the risk of cancer (especially lymphoma)but it is hereditary and can be passed on to your children.

Here's a link to the support group.
http://www.enabling.org/ia/celiac/
 
Thank you guys so much for the advice. I don't think they took multiple samples when they did the biopsy, but I'm not sure. I guess if I'm in the beginning stages, there could be a false negative. I suppose it's time to go back to my specialist. To answer your question, I did do the gluten-free diet very strictly for a six-week period. It was hard to tell if it made a big difference, because at the time I began, the symptoms were not too problematic, and when I went back to the regular diet, there was no drastic change. Maybe I should give it another try now, while my symptoms are in full swing. Thanks again for all the guidance and support. Lynda
 
My sister was diagnosed with it in 1986. If you had the gluten antibody I think you really should go on a gluten-free diet as soon as possible. It's a mistake to wait for full onset of the disease!

ANY gluten destroys the cilia in a celiac's intestinal tract. Some celiacs are so sensitive to gluten they must use separate cooking pots, utensils, and dishes! I advise you to catch it early and save yourself a lot of trouble.

But I wonder if you really are on the verge of developing celiac disease. When you did the six-week period of gluten-free, you should've noticed a big difference right away. This makes me wonder if you 1) had a false negative on the antibody test or 2) you were still getting some gluten in your diet somehow.

Unfortunately, the stuff is hidden in all sorts of products. My sis must avoid hydrolyzed vegetable protein (HVP) as well as modified food starch and this is in EVERYTHING. Gluten is in regular vinegar, too, which means pickles, ketchup, most salad dressings, etc. are out (unless they use rice vinegar or wine vinegar). 99% of all soy sauce is made with wheat now, so that rules out restaurant-prepared Chinese, Japanese and Thai food.

We've found gluten hidden in cans of refried beans, for crying out loud, not to mention canned soups, ice cream, sour cream, yogurt, peanut butter, candy bars, etc.

Left untreated, celiac disease can cause a breakdown in many of the body's systems. For example, celiacs have high rates of infertility, colon cancer and Alzheimer's as well as several other degenerative diseases.

I wish you luck and hope you do not have it, but if you do, take charge of your health and avoid all gluten!
 
NittyGritty: Thanks so much for your post. I'm pretty sure about the antibody, because I had that test repeated a few times with different doctors and different labs, and it turned out the same results each time. The biopsy is another matter, though. I only had that test done once, and it came back fine--no damage to the intestine. I saw a specialist in Manhattan, and he seems to think I would develop it down the line but do not currently have it. I guess I sort of lost momentum when my gastro problems eased down a bit, and I just can't see having my intestines cut open every four months until they find something wrong.
 
All the more reason to cut out the gluten. If you have antibodies in your blood, your body is fighting something! Remove the cause of the antibodies and you will be better able to fight off other threats. An army doesn't do well fighting two (or more) fronts.

If you're worried about the diet, eating gluten-free isn't as difficult as it used to be (like when my sister was first diagnosed). Trader Joe's carries a lot of gluten-free products; so do most health-food stores.

When my sister accidentally gets gluten she gets sick. It doesn't happen that often, but it's very unpleasant for her and it's also disheartening to know that a little more cilia were destroyed. They don't grow back!
 
Just my two cents, as I work in GI and see a lot of patients (pediatric) w/celiac disease.
Get a repeat endoscopy and biopsies BEFORE starting a gluten-free diet.
Otherwise, results will be unreliable.

Of course, you can experiment w/a gluten-free diet if you want to avoid medical intervention for now (but I would say go back--or find a GI who is familiar w/CD, as not all of them are). If you decide to return to the doctors,though, you will need to be back on a regular diet for them to attempt a definitive diagnosis.

I hope things work out and you feel better soon.

Michele
 
Sorry, but just a gentle correction.
Gluten--and more accurately, gliadin--leads to the atrophy of the villi in the small intestine (cilia are hairs and are not in the small intestine).
"Celiac" refers to the abdomen/abdominal wall.

The villi are responsible for nutrient absorption within the small intestine, and their atrophy --and subsequent inabililty of the small intestine to absorb many nutrients--is what causes the symptoms of celiac disease.
The villi do grow back once a low-gluten, gliadin-free diet is instituted and maintained.

Michele
 
Thanks, Michele, I will always be grateful for gentle corrections!

A quick run-through of sites devoted to celiac disease also mention that if a person goes on a gluten-free diet BEFORE a confirmed diagnosis, then gluten antibodies will not appear in subsequent bloodtests and the disease will remain undiscovered, so I stand corrected on that account as well, though not as gracefully corrected as I would've been if Michelle had done it!

But finding out whether you have it or not is very important. If you do have it, it might take a while before the villi heal, as is described here, at http://healthlink.mcw.edu/article/956622658.html

"Improvements begin within days of starting the diet, and the small intestine is usually completely healed -- meaning the villi are intact and working -- in 3 to 6 months. (It may take up to 2 years for older adults.)"

That's a long time to go without proper absorption of nutrients. I also found this statement under the "Treatment" article at this site: http://www.csaceliacs.org/infocenter.html

"Even with the villi in the small intestine being described as being "back to normal," there remains the potential of some nutrients being absorbed at lower levels."

Here are some more sites with information on celiac disease:

http://www.gluten.net/

http://www.celiac.com/
 
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