Questions about Celiac

Eric J · Joined: 17 Jul 2008 Posts: 2

How's it going and my first post here. A little background then some questions. I'm 44 now and have eaten wheat and oatmeal all my life as i was always told they were healthy and they gave me energy to work, exercise etc..and never noticed any discomfort before that i can recall.

Then about 10 years back i came down with CIDP an Auto immune disease simular to Multiple Sclerosis and my doctors are clueless as this just came out of nowhere to strike me. Then over the last 4 or 5 years i've noticed that everytime i eat oatmeal or grain products my intestines burn. It's getting worse and worse over time and now it's so bad that they burn for several days even after i've had a grain meal and i also get really bad leg and hands/fingers cramping after any grains for hours.

Could it possibly be Celiac as to even my research on MS and CIDP shows that Celiacs can get these rare neurological diseases. I'm on disability now so i can't see any docs for testing (no insurance) but i just wanted to throw this out there and see what others may think.

Thankyou so much !!!!
eric

cruelshoes · Joined: 23 Sep 2005 Posts: 2550 Location: Washington State

Hi, Eric. Sorry to hear about your health challenges. Total bummer about not having insurance! I don't have any knowledge about CIDP. Celiac is an autoimmune condition as well, and they tend to travel in packs. Very Happy

Having one can predispose one to having another. That's part of the reason why so many celiacs have things like Type I diabetes and other autoimmune diseases.

If you cannot pursue any testing due to financial constraints, you could certainly do a gluten free trial. If you were to remove gluten totally from your diet (all wheat, barley, rye and oats and any of their derivatives) you might get an idea of whether or not it would help you. But you would have to do it 100% to really see. A few months would probably give you a good idea - you may even see results sooner. But then if there was ever a time in the future when you wanted to proceed to have some testing, you would have to reintroduce gluten in order to do it. I don't know how motivated you are by test results, but many of us really want to see it in writing in order to commit 100% to the diet. Everyone goes about their diagnosis in a different way, and there certainly is no wrong or right way to do it. Whatever works for you. You may get some push back from doctors in the future about being self-diagnosed.

Since you are on disability, finances may be a concern. You don't have to run out and buy a bunch of expensive GF replacement products like bread or cake mixes. It can be relatively inexpensive to go GF if you rely on whole, naked foods, like rice, potatoes, fruits and veggies, unmarinated chicken and meat, fish etc. If you decide to get a little more daring, we have lot of recipes over in our recipe section. Many of them have simple ingredients and don't rely on specialty foods.

In my mind, GF certainly can't hurt you, and it might help you. I hope you will let us know how you are doing.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

Eric J · Joined: 17 Jul 2008 Posts: 2

Thanks for your answer an all Cruelshoes.

eric...

Mairin · Joined: 21 Jul 2008 Posts: 5

I'm in a similar situation to yours. My diagnosis is ME (aka CFS/CFIDS in the US) but was diaguessed with MS for a while. I, too, am on disability.

One thing to consider re a gluten free trial is how a change in "official" diagnosis might affect your benefits. If I have CD, the amount I am alloted for food will increase considerably. It is prudent for me to get tested and have the paper proof which, in my case, is not a big deal because I live in Canada.

There is a $50 at home test just released in BC, Canada which is far from fool proof as the well informed people here can explain far better than I but which may give you some info without costing the earth. There may be comparable tests in the US.

Whatever you decide, I wish you good luck on your healing journey.
Mairin