Gluten Free For Two Months

[tbritt]

I have been on a gluten free diet for two months now and most of the pain in my neck and shoulder have gone. The swelling in my elbow and shoulder is no longer going on. I feel almost normal. There are still some remnants of the illness (the muscle is still smaller in my bicep), but overall I feel great. I no longer have gas. I am hungry for the first time in months. I am so hungry I can't seem to fill up, EVER. I eat plenty of vegetables and protein. I even started to take a multivitamin. I can run again and have even taken up rock climbing! Yay!

I have no diagnosis, but I cannot eat gluten for fear of returning to the ill health I had. Should I bother pursuing a diagnosis at this point? Will it hurt to just be gluten free? Is there any health concern that I should watch out for?

[T.H.]

I know a lot of people here who simply go gluten free, just like you. I believe the philosophy is: why should I hurt myself just because we don't have the medical know-how to diagnose anything but celiac damage? Kind of like cutting ourselves for the doctor to prove to him that we bleed. As for any issue following the diet, no, it shouldn't hurt you to keep gluten from your diet, as long as you eat healthily.

The things to watch out for that I know of/have heard of...

1. Get tested for vitamin deficiencies now, if you can, and then again in about 6 months. Most adult diagnosed celiacs have some deficiencies. If you still have them later, then you may not be healing completely, might still be getting gluten in your diet, etc... You'll need to take supplements if that happens and perhaps cut even more gluten from the diet. Probably a good idea to get your thyroid tested, too.

2. Many celiacs take gluten-free supplements anyway, because most gluten-free products are not vitamin fortified like many wheat breads/products are. Vitamin D can be an issue for Celiacs, in that area, so getting some sun with your rock climbing should be great.

3. watching your carbs can be an issue. I know some people go on low carb diets, but it's obviously up to you whether you want to go low carb, or just switch carbs. There's differing opinions about both. :-)

[Emilushka]

I have been on a gluten free diet for two months now and most of the pain in my neck and shoulder have gone. The swelling in my elbow and shoulder is no longer going on. I feel almost normal. There are still some remnants of the illness (the muscle is still smaller in my bicep), but overall I feel great. I no longer have gas. I am hungry for the first time in months. I am so hungry I can't seem to fill up, EVER. I eat plenty of vegetables and protein. I even started to take a multivitamin. I can run again and have even taken up rock climbing! Yay!

I have no diagnosis, but I cannot eat gluten for fear of returning to the ill health I had. Should I bother pursuing a diagnosis at this point? Will it hurt to just be gluten free? Is there any health concern that I should watch out for?

If you're female and thinking of getting pregnant, make sure you've spoken with your OB beforehand about how much folate and how many prenatal vitamins to take. If you're deficient, you may need to take more supplements than you previously thought.

Double-check your vitamins and medications to make sure they don't contain any wheat products as filler.

I second the idea that you don't need any further diagnosis than having your symptoms improve so drastically after going gluten-free. Just notify future health care workers that you are gluten intolerant.

[tbritt]

Thanks for the info. I actually had some vitamin deficiency on my last round of tests before going gluten free.

I can't even get health insurance that I can afford right now because I had "idiopathic" neck and shoulder pain. Several companies turned me down. The high risk pool is too expensive. I was told by the rheumatologist I was possibly "gluten intolerant."

I basically lost my public school teaching job over this illness. The fact that I didn't look sick made it even worse because my boss was not understanding at all. I never realized that something like this could cause that kind of pain. I was going to give up playing the violin and teaching because the doctors kept telling me I just overdid it playing. (By the way, I'm back to practicing 2 hours a day and teaching or rehearsing for up to 6 hours a day.) I attribute all of the shoulder and neck pain to the gluten intolerance. I think I was just malnourished and had some auto-immune responses going on in the shoulder that caused my tendons to be weak.

I have been diligent about following the gluten free diet. I don't think many people could be better at it than I have been. I don't eat at restaurants. I am very good about screening labels and consuming low ingredient foods. I have discipline.

Everything I do was at stake because of this illness. I am very glad to follow a completely gluten free diet. I don't cheat myself by eating foods with gluten. My livelihood depends on it. I didn't think I needed to pursue a diagnosis, but I will be careful about the vitamin deficiency.

Thanks!

[Emilushka]

Thanks for the info. I actually had some vitamin deficiency on my last round of tests before going gluten free.

I can't even get health insurance that I can afford right now because I had "idiopathic" neck and shoulder pain. Several companies turned me down. The high risk pool is too expensive. I was told by the rheumatologist I was possibly "gluten intolerant."

I basically lost my public school teaching job over this illness. The fact that I didn't look sick made it even worse because my boss was not understanding at all. I never realized that something like this could cause that kind of pain. I was going to give up playing the violin and teaching because the doctors kept telling me I just overdid it playing. (By the way, I'm back to practicing 2 hours a day and teaching or rehearsing for up to 6 hours a day.) I attribute all of the shoulder and neck pain to the gluten intolerance. I think I was just malnourished and had some auto-immune responses going on in the shoulder that caused my tendons to be weak.

I have been diligent about following the gluten free diet. I don't think many people could be better at it than I have been. I don't eat at restaurants. I am very good about screening labels and consuming low ingredient foods. I have discipline.

Everything I do was at stake because of this illness. I am very glad to follow a completely gluten free diet. I don't cheat myself by eating foods with gluten. My livelihood depends on it. I didn't think I needed to pursue a diagnosis, but I will be careful about the vitamin deficiency.

Thanks!

Have you explained the bit about your livelihood depending on it to your docs? Some will diagnose you (which means you're set) based on the response to the diet. It might make all the difference for everybody else.

[tbritt]

Have you explained the bit about your livelihood depending on it to your docs? Some will diagnose you (which means you're set) based on the response to the diet. It might make all the difference for everybody else.

I don't think many doctors think professional violin playing is much of a livelihood. I had many tell me that I must have just overdone it playing the violin. It was a horrible kind of pain that couldn't have come from playing the violin. And it got better only when I gave up gluten. (Not when I gave up the violin.) I am convinced that the gluten free diet is the answer for me. I really can't gamble on going to a doctor at this point unless it's an emergency because my coverage from my old job ended and I was denied coverage at normal rates. I can't afford $500 a month for coverage. I'd rather go without. I hope I don't have any other health dilemmas for a while.

[Emilushka]

I don't think many doctors think professional violin playing is much of a livelihood. I had many tell me that I must have just overdone it playing the violin. It was a horrible kind of pain that couldn't have come from playing the violin. And it got better only when I gave up gluten. (Not when I gave up the violin.) I am convinced that the gluten free diet is the answer for me. I really can't gamble on going to a doctor at this point unless it's an emergency because my coverage from my old job ended and I was denied coverage at normal rates. I can't afford $500 a month for coverage. I'd rather go without. I hope I don't have any other health dilemmas for a while.

It doesn't matter what they think is "much of a livelihood" - I don't think walking back and forth on Judge Judy and saying "The parties have been sworn in. You may be seated." is much of a job but I wouldn't deny that dude proper health care. Bah. They were stupid.

The next time you go in, see a different doc. Hopefully a non-idiot, non-jerk, competent physician. Just tell them that you are gluten-intolerant, diagnosed by trial diet. Don't elaborate. They'll put it in your chart and take your word for it from then on. Hopefully that'll be enough to make it "official" to the docs.