Newbee

[Doc1977j]

I'm 30years old, and have had blood work done revealing that i have celiacs. I went to my doctor because, for about 17 years my bowel movements hardly ever felt complete. I also suffered from bloating and often had stomach pains. I have switched my diet to be gluten free, yet do not feel like everyone is describing on the web. My bowel movements are good sometimes, but not that much better, i still get bloated, but stomach pain is less. Everyone seems to of had more severe symptoms then I have, and claim they felt instantly better. I've had no such luck. I'm fairly confident i have eliminated the gluten from my diet, maybe the odd mistake. Is it possible the blood work is incorrect, and something else is the cause?

[psawyer]

Some people feel better immediately upon starting the gluten-free diet. For others, it takes some time. It seems to depend on just how much damage has been done to the villi, and how many other related issues have developed. It took me about three months gluten-free to feel "normal" again. My villi were almost completely destroyed by the time I got a correct diagnosis. The symptoms that you describe are consistent with celiac disease before the damage to the villi becomes severe.

[confused]

many times celiacs also have to give up dairy and many have to give up soy. Maybe try giving those up and see how you feel. I felt better the first few days gluten free. But then felt bad again until i gave up dairy, then once again i felt great, then bad again so i gave up soy. Then i felt the best i have ever felt. I also had to give up garlic and beans tho, but im hoping once my villi heal that i can once again bring those two back in.

Im 5 months gluten free and feel the best i have ever felt, but im still not 100 percent. Some people take 6 months to 2 years to feel better.

Have you completely made sure you are completely gluten free and no chance for cross contimanation.

paula

[Guest j_mommy]

Just wondering if you have removed things from your home that would still contain gluten...such as toaster, wooden spoons, scratched pots and pans, colander ect??????

As previous posters have said...everybody varies on recovery times. I felt good at first but know think I have something else going on. That said I still feel better than before.

also remember some people who have celiac show no symptoms at all.

[lovegrov]

Bloodwork for celiac is very rarely false positive. And while some symptoms are more prevalent than others (fatigue, not diarrhea, is the most common), you almost certainly have it based just on the bloodwork.

richard

[miles2go]

Just wanted to say hi Doc1977j, I'm one of those who took a couple of years to start feeling better. And it's not a smooth ride - some days you can feel great and then others not so much but oh, so worthwhile! I don't know if you've had your iron count tested, but that may be something to consider, too.

Hang in there,

Margaret

[Doc1977j]

Thank you for the advice and tips. I'm going to clean house and eliminate anything that may be contaminating my diet. I guess i just need to come to terms. But do i ever miss beer and pizza, just not the way it made me feel.

Thanks again

[CMCM]

Your blood work is positive, therefore the result is clear. A positive blood test rules in celiac disease, and a negative one does not rule it out, remember.

By the time I figured things out for myself, my system was such a mess I felt like there wasn't a single food I could eat. EVERYTHING bothered me! What I eventually figured out was that I had to pare my diet down considerably and eat a very basic diet which included only things not likely to be bothersome. So for 5 or 6 months I eliminated all dairy, soy, all the other grains including rice, all gluten free baked goods (which made me very sick initially), mostly sugar free. So I was basically eating meats, chicken, fish, eggs (which I knew didn't bother me because I tested for them), green veggies but none of the nightshades and no starches like potatoes or corn. Lots of water. No sodas, no artificial sweeteners. Actually, I was eating a very Atkins-like diet for the most part. Once I did this, I really started to feel "normal" fairly quickly...maybe about a week or so. After about 6 months I started testing by adding things back in, carefully, one at a time to see what bothered me. I think if I had done my simple diet early on, I would have gotten better faster.

[mftnchn]

I second all of these ideas. Also it wasn't clear to me how long you have been gluten-free? The celiac diagnosis sounds firm, now its just making sure you are completely away from gluten, and being patient. The ups and downs are where I am at too.

[ravenwoodglass]

Thank you for the advice and tips. I'm going to clean house and eliminate anything that may be contaminating my diet. I guess i just need to come to terms. But do i ever miss beer and pizza, just not the way it made me feel.

Thanks again

You have gotten some great advice so I am just going to chime in with the fact that you can still have pizza and beer, just not the kind loaded with poison. Kinnikinnick and Glutino both make good pizza crusts and Kinnikinnick makes some very 'gluten like' gluten-free bread. There is also mainstream gluten-free beer, Redbridge by the folks who make bud and a couple others are around. The diet takes some getting used to and there is a bit of ferreting out to do when it comes to hidden gluten. Eat as simple and whole foods as you can for a bit, the less processed the better. And I agree that for at least a month or two you may want to restrict dairy also. It will help you heal faster.