Posted 11 January 2004 - 02:20 PM
Thank You -- this site is very helpful!
Posted 11 January 2004 - 05:02 PM
I really cannot offer any advise on the blood work except to say it is my understanding if you have a positive result you most likely have Celiac or gluten sensitivity. If you are not comfortable with the results you could check out www.enterolab.com they perform a stool panel test, which is more sensative than blood.
A gluten free diet is not bad, yes at first it can be a little overwhelming but it does get better especially after you see the change in yourself and the way you feel.
I hope this helps and that you get answers soon!
Posted 12 January 2004 - 09:29 AM
You certainly could have celiac disease. Blood tests can come back false-negative for a number of reasons. Also, celiac disease-related antibodies are concenrated INSIDE the small intestine and usually only "spill" over into the bloodstream LATE in the course of the disease! Another interesting observation is that blood antibody levels DO NOT correlate with the extent of intestinal damage. Some patients have low antibody levels but a lot of intestinal damage, while others have high antibody levels and little damage (but presumably the celiac disease is affecting other body systems, just not primarily the intestines).
If your doctor refuses to schedule a biopsy, you will need to decide whether to try the gluten-free diet immediately or pursue further testing first. Enterolab testing would probably still be accurate even after you go gluten-free (for a couple of months, at least), but conventional testing would NOT be!
The gluten-free diet is "difficult" only in that YOU must accept COMPLETE responsibility for ensuring that your food is safe to eat. It is extremely risky to trust other people's judgment, especially if they are not gluten-free themselves, and even their best intentions can easily be derailed by contaminated cookware or countertops! However, it is usually NOT difficult to stick with the diet once you start to see improvement, simply because you will feel so much better. It can take time before improvement becomes noticeable, and you WILL have a lot of accidents for the first year or so, but you will be healing--and that makes it worth it!
It is great that you prefer natural healing to drug "therapy"--too many people (in my opinion) don't! I hope you get some answers soon, so you can begin to heal. Good luck!
gluten-free since November 1, 2003
Posted 12 January 2004 - 11:10 AM
After reading the responses that I have received from this message board and conducting my own research, I plan to stop taking the Irritable Bowel Medication this week and begin a gluten-free diet this weekend. I may also take advantage of the more specific test (enterolab). Like many other people on these message boards I tend to be prone to mouth sores as well. Also I notice that sometimes I develop a minor allergic reactions to certain types of beer. Could this be due to Gluten Sensitivuty/celiac disease?
Now I am on a quest to find out what food and drink are gluten-free. Any suggestions of where I can find detailed lists on the internet would be greatly appreciated! Again thanks for the quick responses
Posted 12 January 2004 - 11:16 AM
I do not drink beer or other drinks but it seems that I have read something about beer having gluten in it. If you do a search on "beer" on this board it will pull up all posts related to it.
As far as other gluten-free food and drink, here is a good link of "some" of the gluten free foods and drinks:
I hope this helps
Posted 15 January 2004 - 06:22 PM
I have something to say about the blood tests. First off they are not 100% accurate, I don't think there are too many tests out there that are. But as for the tTG test being negative, first off the test has to be performed by a specialized lab, and it has to be done using human tTG and most regular labs use pig tTG. Unless you use human tTG the test is not accurate. I personally tested negative on all the blood tests. My kids tested positive on the IGG only and have now had the tests repeated by their new doctor and he only uses Promethius Labs for testing for Celiac Disease and they only use human tTG and always check for IGA deficiency (which can alter your test results if you are deficient in IGA). I know my test were done by an incompetent lab (at least as far as celiac disease goes), but at least I can be assured that my kids tests are accurate.
By the way, I was diagnosed through Enterolab using their Complete Stool and Gene Panel. I tested positive on the Gliadin and tTG stool tests, and positive for HLA DQ2 (the main gene responsible for celiac disease, the other being HLA DQ8).
Mariann, gluten intolerant and mother of 3 gluten intolerant children
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