Do I Call Myself A Celiac?

[MDRB]

My underlying theory on this whole topic is this: If you go gluten-free for X amount of time and you feel like doing cartwheels, or your variation thereof, then when you go back to the dark side you feel badly. Wouldn't it just make sense not to eat it and call an end to it? That goes for all things not just gluten. My mother has horrible reactions to that pepper stuff at pizza parlors, but not anything else hot, so she just stays away from that. It works. I've never had an official diagnosis done, and have known several others who do not have one, and we seem to function okay without it. My internal symptoms improved with no wheat, but this cursed DH is hanging on for fun I suppose.

I guess because there are other health problems that have similar symptoms to celiac disease and can improve on a gluten-free diet (eg lyme disease, candida problem). Also that theory doesn't really help people who have celiac disease but don't get much in the way of symptoms.

Other than that I totally agree with you, until doctors become more aware and willing to test for celiac disease then it is up to the patients to figure thins out for themselves.

[linuxprincess]

until doctors become more aware and willing to test for celiac disease then it is up to the patients to figure thins out for themselves.

I agree with you on this. I self diagnosed via the internet and went to my doc w/ the DH and pretty much said I'm a GFer now and he just agreed with me that it was the best thing. No tests or anything, just a sight confirmation ( which saved me money from the testing ). The fact that my father was diagnosed with Addison's just a month or so before I went to the doctor and the fact that he's had symptoms his whole life right on with Celiacs also helped me in the self diagnosis. I begged for months to get my father tested for Celiacs - IT'S GENETIC - I pleaded, but to no avail. I think that being very aware of how your body reacts and feels is also a big key to figuring out what is wrong with your body. But then again, like you said, without symptoms present one can just continue on slowly harming their body and never knowing it.

[darlindeb25]

Well, I never had an official diagnosis, I have had several wrong diagnosis--which so many of us have had. IBS, nervous stomach, colitus, too much stress, maybe diverticulitus (stop eating any seeds and nuts) a reacurring flu virus, and my personal favorite, "It's all in your head!" Twenty six yrs ago, when I got pregnant with my daughter, and was on birth control pills, the doctor told me I was wrestling with a flu virus, now I know, what was really happening, I was not absorbing the birth control pills, just as I was not absorbing other vitamins and minerals! She is my 5th child, the 4th was only 5 months old when I got pregnant with her, I was so overwhelmed. After her birth, then I started having panic attacks, agoraphobia, anticipatory anxiety--I was then put on Xanax, later Paxil. I suffered many more years, peripheral neuropathy began and I was diagnosed with carpal tunnel 10 yrs ago. My daughter was 17 when I found out about celiac disease. My sister had been diagnosed in March of that year, I had been divorced and had no medical insurance, and no money, I could not afford to be tested, so we decided I should go gluten free too. So in July 2000, I went gluten-free, and it was great. I felt so much better, I started losing all the weight that malnourishment had added on, I weaned off of Paxil, and I got my life back. After 4 yrs gluten free, other intolerance's started rearing their ugly heads, and now I have so many intolerance's, it's easier for me to list what I can eat, as opposed to what I can't!

After nearly 8 years, I think the only way I can get an official diagnosis, is by a gluten challenge, which I WILL NEVER DO, maybe by a gene test, which I am not sure my insurance will pay for and I can't, or by blood work, which, probably doesn't work once you are gluten free, that I am not sure about. It doesn't matter to me--I have celiac disease, there is no doubt in my mind. Even my PCP is 99% sure I have celiac disease, without a positive diagnosis. That's good enough for me. I am gluten free for life, doesn't matter!

[MDRB]

After nearly 8 years, I think the only way I can get an official diagnosis, is by a gluten challenge, which I WILL NEVER DO, maybe by a gene test, which I am not sure my insurance will pay for and I can't, or by blood work, which, probably doesn't work once you are gluten free, that I am not sure about. It doesn't matter to me--I have celiac disease, there is no doubt in my mind. Even my PCP is 99% sure I have celiac disease, without a positive diagnosis. That's good enough for me. I am gluten free for life, doesn't matter!

I did the gluten challenge and it was the worst time of my life. I was practically comatose for the 4 weeks I was on the gluten and it took me about another month to start feeling better again once gluten free.

There has to be an easier way to diagnose celiac disease! Having done the gluten challenge I think that it is far too much to ask a person to go through. For this reason I always warn people that if they ever want a diagnosis, not to go gluten free before having a biopsy.