2 Weeks Gluten Free And Feeling Great!

[Pegleg84]

Hello everyone,

A couple weeks ago, after several consecutive days of feeling absolutely rotten after eating, I decided to take some action and go gluten free. I haven't been diagnosed with Celiac, but have been having numerous increasing symptoms for at least a year. My mother, sister, and several family members have the disease. I have gotten IgA/IgG (whatever) testing done twice now and have been told it was negative (though I havn't actually seen the results for myself, which I will ask my doctor for the next time I see him)

anyway, I thought if I try the GFD and feel better, then I might be on to something. I feel so much better! The first few days were still touchy, but I havn't had any significant stomach problems for at least a week, except for when I broke down and had a cookie the other day. I learned my lesson! Other than that and a couple sips of beer (and only a sip!), i've been as strict as possible. Of course, working in a pizza place probably doesn't help.

It hasn't been long enough to tell if other symptoms, such as depression/anxiety, liver counts, constipation, etc, are getting significantly better yet, but definitely haven't gotten worse. My anxiety has been up, particularly the day after I had the cookie, but that could be due to some significant stress/changes in my life right now.

In any case, even if I don't actually have celiac, I definitely have gluten issues or I wouldn't feel so much better.

I am moving cities in a month to go to school in Toronto. Until then , I will stick more or less to the GFD, though will probably indulge in a few things (like the beer my BF and I just made)once I'm finished working, basically go on one last gluten binge, spend a week recovering, and then go strict on the diet from the moment I get on the plane.

So, what do you think? Should I simply stick to the diet as a self-diagnosis, or should I go back on gluten and get an endoscopy done in the near future?

Anyway, just wanted to get any opinions or advice

thanks again

Peggy

[Rebecca's mom]

How "strong" are you? By which I mean when you are up in Toronto, do you think that you will be able to resist the urge to eat gluten if you don't know that you have a positive celiac disease diagnosis? If you are one of those people who has excellent self-control, then you probably can decide if you want to be tested or not. If, like most of us, you may find yourself tempted to say, "Well, just this once.....", you may need to have the test done, just to keep you on the straight and narrow if you feel tempted to "cheat"!

Just a thought - it sounds like you are leaning in the "right" direction, though -

Teresa Koch

[CeliBelli]

Peggy,

I highly recommend you get tested again, this time with the newer antibody and genetics tests from a leading lab such as Prometheus or Kimball Labs, or their Canadian counterparts. There is an excellent set of essays by Dr. Scot Lewey elsewhere on this website that discusses genetics testing, which with your family history sounds like a must. You can find those essays here:

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

As Rebecca's Mom said, you will stick to the gluten-free diet better if you have the certainty of a diagnosis. You may also need an official medical diagnosis in hand when dealing with doctors and hospitals in the future, since they don't give much credence to self-diagnosis.

And if you already know you have other family members with it, you will want to know whether you carry the gene(s) before you have children, if that is what you choose to do.

Good luck!

[Rebecca's mom]

Peggy,

One more thing that you may want to keep in mind is that I believe in Canada if someone has a positive medical diagnosis of Celiac Disease, they get some sort of tax break or assistance to "shoulder" the additional cost of a medically necessary diet. Also, if you have a celiac disease diagnosis, you will be able to go to the food services folks at the university you will be attending, and they will work with you to ensure that you are getting "safe" foods .

I would talk with your doctor and see if there is any way that you can get a test without having to do a gluten challenge. A good GI doctor who is knowledgeable about celiac disease should be able to look at your symptoms and your response to a gluten-free diet and tell you where to go from there.

You may want to contact your local Gluten Intolerance Group (GIG) chapter and find out which doctors they recommend in your area. Just go to the national GIG website, and they should have a link to your state/area's nearest chapter.

Best of luck!

Teresa Koch

Fort Worth, Texas

[Pegleg84]

Thanks for the replies

I would love to have a diagnosis, finally, but I may have to wait a little longer. Unfortunately, scheduling a biopsy before I leave probably isn't possible. I'm basically going to act as though I do have the disease, which will be tricky at times, but I'm pretty confident. I guess I just have to get used to asking virtually anywhere I eat what's in the food. I'm already used to scouring labels. And I was pleasantly surprised that brown rice pasta is pretty good. Trust me, I'll have little trouble feeding myself.

If all goes well this summer, I'll go back on gluten and try to get a biopsy done in the fall. Yes, I know about the tax-break on gluten-free food (which my mom is now taking advantage of). But as long as I can find a source of cheap rice, I'll be fine. Also, there are allegedly quite a few gluten-free restaurants in the city, which I will have to track down on weekends.

So, I will keep you posted.

thanks again for your support