My Head Is Spinning

[bartfull]

So I have this recurring jaw pain that no one has been able to diagnose. I went to the doctor a couple of weeks ago so he could write a prescription for a gluten free/corn free/salicylate free painkiller to be made at a compounding pharmacy. He wanted to see me again so we made an appointment that I kept today.

I really like this guy, I think. He spent a full HOUR with me! Most doctors usually spend five minutes or less with their patients.

First we talked about my diet. He would like me to try a vegan diet for a while because he says animal proteins contribute to inflamation. There's no way I could do that for very long though because between the vegetables that literally make me vomit from the taste (like green beans) and the ones that give me digestive problems (leafy greens, sweet potatoes, asparagus) there aren't enough vegetables I can eat.

He also wants me to get some blood work done. He seems to think that a lot of my symptoms indicate a possibility of leukemia. There is a higher incedence of leukemia in people with celiac. I knew that already. And Mom supposedly died of leukemia (although I have suspicions that it might have been her B-12 deficiency). The doctor told me when Mom was diagnosed that the type she had can be hereditary, so if I ever stated feeling tired for no reason, I should go get checked right away.

Tired? Aren't we ALL suffering from fatigue? Yeah, I'm tired. Yeah, I have bone pain. Yeah, I'm pale. Yeah, I bruise easily, yeah, I've lost over 20 pounds in the past few months. But those are all symptoms of celiac too, aren't they? I know it's good that this guy is so thorough, but I don't even want tho THINK about leukemia.

I don't really need any responses. There's nothing to say until I get the results back. But it sure is good to have a place I can come to get things off my chest. I'm going to try really hard not to think about it, but it's going to be a long weekend. Oh well, onward and upward...

[Skylark]

Yuck. I'm glad to hear you found a good doctor but yeah. Leu-nevermind. It sounds like a good weekend for a really involved project to keep your mind off things!

[Lisa]

So sorry Bartful, that you are going through this worry. I think that my doctor would listen to me and suggest running some tests (that he suspected).

When the tests were returned, that's when he would have a sit down with me and explain the test results.

Stay positive. I know all too well that a positive attitude can make a LARGE difference in your health.

[maximoo]

There could be other possibilities for some of ur symptoms.

A friend of mine had unexplained jaw pain & it turned out to be something called a Kerato cyst. It is an aggressive cyst that recurs in the jaw but it is benign. Maybe you should have your dentist take xrays to chk further.

My sister used to bruise very easily and she has what is called ITB--low platelet count. Its easily treatbale. Maybe you should be chkd for that too.

Do you swim? Water/aqua therapy helps with all sorts of pain.

Do not fret about what you don't know this wkend. Worrying is a waste of time & energy. Go out with your friends, take in a movie, go shopping (retail therapy works wonder)

Good luck & really try to have a good wkend!

[pricklypear1971]

Well, I'm glad you found a doctor you like.

I hope you have an interesting weekend - something to keep you distracted. Maybe you'll be so busy at work you won't have two minutes to think.

You could keep yourself very entertained by trying to come up with a well - rounded week of Vegan meals. Sorry, I would have giggled at that one and made the doc angry. Perhaps he'll giggle if he sees your menu???

[Marilyn R]

Hey Bartful, I'm thinking of you and wishing you well. Just so you know, I like veggies, all of them with the exception of fresh tomato. I like veggies more than I like meat.

In my humble opinion, it would have been impossible to go vegan in the first stages of going post gluten-free because I craved protein. I've done a fair amount of research about celiac disease and have never seen any medical literature stating you should avoid it with celiac disease. (I searched when it seemed everything was making me sick, and I wondered if it could be from animals who were fed grains! I did another quick search tonight to see if there was anything new, and nothing popped up.

Bruising: could be from the malabsorbtion (Vitamin K)

Weight Loss: malabsorbtion (I lost over 40 lbs.)

Tired: malabsorbtion B-12, magnesium... & trying to sanely deal with the disease, shop, cook, prepare, plan, when we're used to being able to go to restaurants or zap stuff in the microwave...

Bone pain: common, because of the calcium malabsorbtion, your parathyroid glands have been robbing your bones of calcium to try to compensate. That makes your bones ache. Google hyperparathyroidism if you want to learn more.

Been there, done that, still tired but doing much better. Please don't get in a tizz about your doctor thinking out loud. Worry and stress seems to feed the side effects of this autoimmune disease.

My sister hates all vegetables except onion and corn, tolerates fresh lettuce if it's iceburg or romaine, maybe a wee bit of other lettuce varieties.

I don't think you're a candidate for vegan, don't think animal protein is a problem, and don't think you have leukemia. The first months are really difficult because you may start developing other food intolerances.

So, as my good friend would say, "Simmer down, sista!"

The other thing is that if you haven't pinpointed what else is bugging your system, you can have funky blood test resutlts sometimes if you're having a food reaction.

Hang loose, have a soak in the tub and a glass of wine (unless those nitrates get you.)

Wish you all the best, when do you get your results?

[RollingAlong]

vegan! hahahahahah maybe later; if you want, but you've got much bigger fish to fry right now. I am talking about general healing, not the possibility of leukemia, which frankly, sounds unlikely to me. My spouse had the strangest blood work when he first went gluten-free (suggestive of leukemia, I mean) and now he's fine. He was also pale, fatigued and found some foods nauseating.

Was your vitamin D checked also?

You could look into vitamin K1 and K2 (very different animals, so to speak)

You need to K2 and the D for bone health.

Most people can make K2 in their digestive tracts, but celiacs, unfortunately, can't always count on that, especially at first.

please let us know how you get on with your new doc; who sounds really great BTW.

[bartfull]

I had a great day yesterday. My friends gathered for our weekly jam session and the music was great. I played my banjo, and that always cheers me up. Today I am going to my friend Kelly's and clean her house so when she gets home from Germany she will come home to a clean, comfortable house. (She is in Germany for cancer treatment.)

The reason the doctor wants me to try a vegan diet for a while is to cut down on the inflammation in my jaw. I made the mistake of looking things up on the internet yesterday. There are a lot of scary things that can cause this pain and swelling. The fact that it is beginning to hurt and swell on the other side, after years of it only being on one side is a bit disconcerting, not to mention painful.

But I'll know more after the tests, and until then I'll just try to stay busy.

It's interesting about the vitamin K. I know that leafy greens are high in K, and for some reason, I have NEVER been able to digest leafy greens. It used to be that they would show up, very identifiable, the next day. Now it is a matter of a few hours before they decide to exit, and exit explosively. Who knows? This diet keeps getting more complicated and confusing every day.

Does ANYONE know of a multi-vitamin that is gluten AND corn free? That means it can't have any "flavor" or "flavoring" either. And I want to get a sub-lingual B-12 and biotin too. Any ideas are gratefully accepted.

[pricklypear1971]

Vitanica Women's Symmetry says no preservatives, binders, artificial colors or flavors, sugars, starch, lactose, salt, corn, wheat, gluten or milk derivatives.

Contains Vitamin k.

Vegetarian capsule (cellulose and water). Vitamin E from soy.

If you were nearby I'd give them to you since they also contain IODINE.

[bartfull]

PricklyPear, thank you! I went to their website and although they don't sell them in South Dakota, I can order them online. They look like just what I need!

[Jenny (AZ via TX)]

Bartful, I'm sending lots of positive thoughts to you. If you haven't had your blood tests yet, because you are fatigued, you may want them to test your ferritin levels. Perhaps you are anemic? Also maybe test for thyroid. I had extremely low levels of ferritin for a while which made me feel exhausted all the time. And, I was extremely pale.

Sorry about the veggies. Very hard to eat something that you can't digest.

[pricklypear1971]

PricklyPear, thank you! I went to their website and although they don't sell them in South Dakota, I can order them online. They look like just what I need!

They are good - meaning I could tell I was taking them. I also developed a raging rash... Oh well.

[bartfull]

Had the blood drawn this morning at our beautiful new hospital. Someone had told me that there was one lady who could draw blood absolutely painlessly. She was the one I got, and I honestly didn't even feel the pressure, let alone the sting. Not that that matters, but I just wanted to give her credit.

They said the tests would be completed today and sent right to my doctor so I am expecting a phone call later today. I'll be sure to let you know.

Thanks everyone, for the support and suggestions. You folks are the best!!

[Skylark]

The reason the doctor wants me to try a vegan diet for a while is to cut down on the inflammation in my jaw. I made the mistake of looking things up on the internet yesterday. There are a lot of scary things that can cause this pain and swelling. The fact that it is beginning to hurt and swell on the other side, after years of it only being on one side is a bit disconcerting, not to mention painful.

Since when is a vegan diet anti-inflammatory? Help me out here. Vegan diets are deficient in omega-3, B12, and natural vitamin D, and too heavy on lectins and omega-6, all of which is thought to promote inflammation. The omega-6/omega-3 ratio on a vegan diet is particularly unhealthy and problematic for inflammation. You may want to do a little reading.

Oh, and fingers crossed about your lab results!!! You must be on pins and needles.

[bartfull]

Still no word yet.

I think I know now why he suggested the vegan diet. He's a Seventh Day Adventist, and although I didn't know this before, they believe in vegetarian and/or vegan diets. I did read a study by the National Institute of Health that said they followed a bunch of Seventh Day Adventists for years, some who ate meat and some who didn't, and the ones who didn't were healthier and lived an average of seven to eight years longer.

That may be true, but a celiac/corn intolerant person would probably die of malnutrition on a diet like that. So I won't be going vegan. Heck, I tried vegetarian once for one month as a favor to a friend and I was never so hungry in my life! I'm a carnivore for sure.

[Skylark]

The Seventh Day Adventist study is interesting, but a little difficult to interpret. The main meat eaten by non-vegetarians was beef rather than chicken or fish. The beef consumption increased the risk of heart disease in men, which isn't terribly surprising. They found reduced mortality in people consuming whole grains, and that frequent consumption of nuts was highly protective against heart disease.

This dovetails nicely with most anti-inflammatory diet recommendations, where people are encouraged to eat more fish and supplement omega-3 to shift omega-3:omega-6 ratio, fruits and vegetables, eat whole grains and avoid refined grains, and lower their consumption of fatty red meat.

[Skylark]

Bartfull, did you get your test results back? I've been worried about you!

[bartfull]

Bartfull, did you get your test results back? I've been worried about you!

No. I was hoping to hear today as they said the tests would be completed yesterday. I'm thinking that rather than calling him with the results they mailed them - there were an awful lot of lines. I never knew there were so many TYPES of white blood cells! Anyway, they only pick up mail once a day here in the beautiful boonies, so if he didn't get it today, he should get it tomorrow. I HOPE! I promise, other than my friend Patricia, you folks here will be the first to know.

Thanks for worrying about me. I don't WANT you to worry, but it feels great to know you're thinking of me. God bless you!

[bartfull]

AARGH!! The phone just rang and it was my doctor. I was braced and ready - but he only called to tell me his nutritionist wants me to have a B-12 and D panel. He hasn't heard back yet about the other tests. He said he'd call them later if it doesn't come in the mail today. This whole thing is just this side of torture!

The nutritionist wants a list of every food that bothers me. Pffftt! It'd be a lot easier to list those that don't! The list of OK foods keeps shrinking. But maybe they can help me get to the bottom of this - WITHOUT going vegan!

[pricklypear1971]

AARGH!! The phone just rang and it was my doctor. I was braced and ready - but he only called to tell me his nutritionist wants me to have a B-12 and D panel. He hasn't heard back yet about the other tests. He said he'd call them later if it doesn't come in the mail today. This whole thing is just this side of torture!

The nutritionist wants a list of every food that bothers me. Pffftt! It'd be a lot easier to list those that don't! The list of OK foods keeps shrinking. But maybe they can help me get to the bottom of this - WITHOUT going vegan!

Sorry, waiting sucks.

They never ran vitamin panels??? Geez.

Yes, hopefully some answers or help are around the corner!

[Skylark]

OH, geez. I can't believe you're still waiting. Low B12 could explain some of your symptoms.

[bartfull]

They never ran vitamin panels because I can't afford it. No insurance. The doctor has been treating me out of the free clinic here. I HATE that, but at the moment I just don't have the money to see him at his regular practice. I just told him how bad I feel about this - I have ALWAYS paid my own way in life. But he said that in this economy there are a lot of folks like me who need a little help right now, which is why he volunteers his time at the free clinic. I promised him that once things pick up at the shop (this is my slowest time of year), I will start driving up to his office and paying him like a regular person.

But I have to say, I really like this guy. How many doctors do you know who would do all this for free? I mean, I know there are free clinics in other places, but they usually only treat acute problems. This guy wants to work with me long term to figure out my diet, as well as treat any "other" problems I have.

[pricklypear1971]

They never ran vitamin panels because I can't afford it. No insurance. The doctor has been treating me out of the free clinic here. I HATE that, but at the moment I just don't have the money to see him at his regular practice. I just told him how bad I feel about this - I have ALWAYS paid my own way in life. But he said that in this economy there are a lot of folks like me who need a little help right now, which is why he volunteers his time at the free clinic. I promised him that once things pick up at the shop (this is my slowest time of year), I will start driving up to his office and paying him like a regular person.

But I have to say, I really like this guy. How many doctors do you know who would do all this for free? I mean, I know there are free clinics in other places, but they usually only treat acute problems. This guy wants to work with me long term to figure out my diet, as well as treat any "other" problems I have.

I think its great, and you are certainly deserving of his time.

[bartfull]

I FINALLY heard - and it is NOT leukemia! Anyone care to do the happy dance with me?

The hospital never sent the results! They said the tests would be completed the same day I had them, but they neither called nor mailed them to my doctor. The nutritionist finally called them and they faxed it. The doctor hasn't even seen it yet, but the nutritionist assured me that "nothing terrible showed up".

Now I'm supposed to get vitamins D and B-12 tested, and he ordered a "CMP" blood test too. That one appears to check kidney and liver function. He seems to be suspecting something more than just celiac, and although I have a deep seated mistrust of doctors, I'm going to let this guy continue to treat me. He's thorough, he seems to know what he's talking about, his heart is definitely in the right place, and I have decided to trust him. I'll keep you updated.

And I thank you for sharing my angst, giving me support, and well, being my friends. Big (((((HUG))))) to all of you!

[Skylark]

Happy dance!!! I'm very glad to hear it isn't leukeuma!