Do I Have Celiac?

[BuffyKat]

Hi everyone. I am 39 and have been diagnosed as having IBD for many years -- took Zelnorm for a while. Starting in early April 2008, I started working with a trainer 2x a week and running 2-3 times a week (3-6 miles) and I've changed my diet dramatically to eat healthier. I have a very stressful job so I wanted more energy and stress relief, therefore, I make myself exercise. I am usually tired and stressed and I am always bloated. I was measured last week to see my progress and after more than 3 months of consistently working out, I lost nothing in my stomach, not one mm, and only 2 pounds. My belly is mushy and gooey and I always feel completely stuffed after eating, even if I eat less than 1000 calories a day which I did last week. I also take Gas X several times a day, the highest strength available over the counter. One goal of working out was to have my pants fit better but they don't. I also have headaches almost daily (these could be from stress, I don't know).

I'm going to the doctor next week and want to make sure she will test me for this and not just say IBD. Do most docs have to be convinced to look at Celiac Disease? I really hope I don't have it but I've looked at the symptoms many times and keep coming back to this possibly being my problem. I'm very frustrated. I haven't gained weight . but am wondering if with the exercise I'm keeping more weight gain at bay (the 2 pounds I lost were probably water). I would think she'll do a blood draw if I convince her but is that the first way they test? I apologize if this has been posted on another string but I just found this site and the info was so good, I wanted to post right away. I appreciate any insight/opinions/advice. Thanks.

[veggienft]

You don't need to know the name of your disease. You need a cure for your symptoms. If the diet cures your symptoms, then stay on the diet.

You don't need your doctor's permission to try the diet. But if you think you do, then ask around. Find a doctor who will tell you to try the diet.

If the diet works, tell people you have celiac disease.

..

[Tim-n-VA]

The one caveat that I would add is that you need to know what level of clinical certainty from mainstream medicine that you want and don't start self-treatment until you have that. Most of the testing for gluten issues are actually tests for the bodies reaction and require the patient to have been consuming gluten.

[darlindeb25]

Ask your doctor to do a celiac panel--gene testing. I finally have insurance, and found a doctor who ordered gene testing, quite by accident. He is my neurologist, and he thinks I am not utilizing vitamins and minerals properly, so he ran a load of blood tests. They also do a blood test for celiac, that is not gene testing, and of course, an endoscopy for some.

You sound similiar to what I was going through a fews months back, with the exercise and no weight loss. My metabolism had shut down. Get the doctor to run tests first, and if you do not get any clear answers from her/him, then go gluten free and see what happens. You have to do it all the way though, you can't be a little gluten free. Many malnourished people gain weight, instead of losing. Doctors do not always recognize that in a celiac, and it's sad...there are just as many, if not more, heavy celiac/gluten intolerant people as there are skinny ones. My metabolism kicked back in, but it was an accidental glutening that did it, and I was sick from that glutening for a very long time, over 3 months. After feeling better, and changing a few more things in my diet (I am not grain free), I lost 40#. So, keep at it, it can happen.

My celiac panel came back that I have double DQ1 genes. As far as I'm concerned, the jury is still out on whether a DQ1 is celiac or not. DQ2, and 8, usually get a celiac diagnosis. Me having two DQ1 genes, just means double trouble. It also means, I gave each of my kids a DQ1 gene.

Good luck.