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Figureda Few Things Out

bartfull

By bartfull
in Coping with Celiac Disease

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bartfull Rising Star
bartfull
Posted

I saw the thread on TMJ yesterday but didn't want to hijack it.

I have had (for the last five years) a very swollen and painful jaw. I have seen two different dentists who both said it is not caused by a tooth, three different MD's who had no idea unless I get an MRI (no insurance so that's out.) plus several holistic healers and some assorted quacks that my friends have dragged me to. Nothing has helped. Doctors say it MAY be a tumor. It MAY be a bone infection. It MAY be a bone cyst. It is NOT TMJ. It is NOT a blocked saliva duct.

After I went gluten and corn free, I had a bit of remission on the jaw. Now, that would often happen anyway. I'll have tremendous pain for two or three weeks, then a month with little more than a twinge. But the lump is ALWAYS there - about the size of a small hen's egg.

I haven't been able to stay "clean" though. Just when I'm feeling better, I try a new food and get sick again. Last time it was Kinikinik english muffins. I was doing so WELL! Psoriasis gone, sleeping like a baby, and not only did the jaw pain go away, but the hen's egg lump shrunk down to robin's egg size.

I'm pretty sure my food intolerances didn't CAUSE the infection, tumor, cyst, or whatever it is, but because my body only has so much healing power to go around, it has been concentrating on trying to heal my gut, and there just wasn't enough left to tackle the jaw.

So now I have vowed to stick to only the foods I know I can have. I won't be trying anything new for a long time. Beef/pork/chicken. Brown rice or new potatoes. Broccoli or cauliflower. AND, it seems the Cape Cod potato chips and the Starbucks ice cream don't hurt me either.

I'd LIKE to try making gravy so that I can have some for Thanksgiving, but I don't want to risk it. I'll take my brown rice chicken and broccoli to dinner, and it'll be just fine.

Am I over reacting? I'm so afraid if I eat the wrong thing it'll start hurting again, and when it hurts, the pain is pretty severe. I can live on the foods I mentioned, can't I? I mean, nutritionally - I already know that my will power combined with my fear will make it easy not to stray away from these foods.

So, forgive me for the long post, but does anyone else have a different, unrelated to Celiac problem that gets worse when glutened?

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AVR1962 Collaborator
AVR1962
Posted

Bartful, congratulations for your find and coming such a long way! Everytime I hear someone say something about a lump in the throat I just have to ask if you have had your thyroid checked? I had a growth on mine which I am on meds to shrink. Approx half of Americans will end up with one before the age of 50 but many go their whole life without knowing. They are noncancerous. Thought I'd throw that out for info.

And no you are not over reacting. I think it is great that you have something planned already.

We have an invitation to a friend's house and I am now having to do the thinking bit myself!!

I also keep getting gluten, I understand how hard it is. For you is it from items you buys mostly? Mine has been from eating out, suspecting something, eating it anyway and that's what I have to stop. I have to stick with what is safe.

Good to hear you are feeling better!

ravenwoodglass Mentor
ravenwoodglass
Posted

I get a lot of tooth and jaw pain when I get glutened so your not alone. Where is the lump? If it is under the jaw it may be a gland. My entire body was full of swollen glands prediagnosis and it took a long time to go away. Doctors always said it was because I had either 'pickers acne' or dermatitis, actually it was DH.

Hopefully your glands will go down gluten free. Do avoid your other intolerances also and read labels carefully. Kinnickinnick stuff should be fine unless it has another ingredient in it you don't tolerate as it is a dedicated gluten free plant.

bartfull Rising Star
bartfull
Posted
  • Author

The lump is on the jawbone itself, halfway between my chin and the hinge. It is hard as a rock. The doctors said is wasn't a gland, they believe it is a growth, or possibly a bone infection. When it first started they put me on some really nasty antibiotics. I was on Clyndamiacin (sp.) for two weeks, then a different one whose name I can't remember, for an additional four weeks. Nothing happened.

This has been going on for so long I'm pretty sure it's not cancer - I'd be dead by now. But whatever it is, it seems that as long as I stay away from corn and wheat, it improves. And this last time I was doing well on the diet, it had improved so much I had hopes it would go away completely.

I WISH I had insurance. I could get the MRI, get treated, AND get tested for food intolerances instead of playing this guessing game. :(

pricklypear1971 Community Regular
pricklypear1971
Posted

I used to get lumps behind my ears. They'd come and go. I was told stress or allergies...that they just happen. They were going to biopsy it when it went away permanently. The surgeon I went to wasn't concerned about cancer because it would come and go.

What changed?? Quit my job in SF and stopped riding CalTrain. I swear I was allergic to the train or the building (very old) that I worked in.

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