update: Long

[Crankin]

As far as I know, my thyroid levels were normal. It was the presence of the nodules that alarmed the ENT. I went to an endocrinologist after I had an ultra sound (who looked at all of the blood work I assume) and told me that the nodules are too small to even do a fine needle biopsy. I guess I could revisit this with her. I am just sick of going to specialists; I feel like a ping pong ball.

[LBTC]

Robyn, I'm sending you butterflies to help you feel light and trust the universe (or whatever you believe in) will help you find the answers for you; and to help you find patience. My own health journey has revealed things I never knew - I've been under adrenal stress for years, and it may in fact be the actual cause of the many strange symptoms I've had. I've started taking a supplement to support the adrenal system and I haven't felt this good in years! All things in time, though. I'm not back to full on exercise, so I'm not sure what that will do at first, but I'm feeling very confident that this year I'll be riding hard again.

What am I trying to say? Do what makes you feel good - can you snowshoe at a gentle pace for a medium amount of time? Get outside and enjoy the world for a bit, and don't push yourself too hard. Have a nice stretch and rest when you get home. Honour your body. Try to understand what it wants....(rest, protein, water, exercise, etc), and try to always give it what it wants. In time your answers will be there for you.

Many hugs and gentle happy butterflies,
~T~

[Crankin]

Just letting you guys know that I have an appointment to see the ENT today. I decided that I think I am just sick; swollen glands, teeth and face hurting. Interestingly, the ringing in my ears has subsided to the point where it's there when I wake up, but then goes away. I did go for a 3.3 mile walk yesterday. It seemed like the snow would be a bit icy for snow shoeing, since we had a bunch of rain Monday night.
Hoping he'll tell me this is just a wicked bad sinus infection.

Robyn

[bmccasland]

Hope you feel better Robyn! Let us know what the ENT says.

[Crankin]

What he said was, "There is nothing wrong." No swollen lymph nodes, nothing he could feel, see, or hear. He did talk to me for about 30 minutes; a very nice older man (well, older than me) who is a cyclist. He gave me the name of an internist at Brigham and Woman's in Boston, who is like MD to the rich and famous. He knows him socially and said I wouldn't be able to see him, but maybe someone in his group. I don't know if I want to go any further with this, I mean every part of my body has been tested, except my heart and lungs, which I can discuss with my primary care doctor. The acupuncture actually seems to be helping some of the muscular things.
When I got home, I was so pissed I told my husband I had to get outside and do something, so we went snow shoeing. The conditions were not great as I suspected and it actually made it harder. Then we went and had coffee and scones.
I see the rheumo for a follow up next week and my primary care doc the week after, so I guess I will think about what I will do next between now and then.

Thanks, everyone.

[KnottedYet]

I know you have been cleared of celiac (which is a darn good thing!), but up to 70% of folks with fibro find their symptoms lessen on a gluten-free diet. Is it something you might consider trying for 2 or 3 weeks, just to see if it works for you?

That might help fill the time until your next doc appts. (lots of gluten-free food info on the internet)

(I brought up fibro to one of my superiors in the clinic today, and he mentioned how fibro and celiac seem to be tied together somehow. So I did some literature searches during my lunch break, and the linkages are pretty fierce. They are NOT the same disease with the same chemical and immunological markers, but both respond to gluten in the diet. Celiac 100%, and fibro about 70% in fibro patients with gut issues and about 30% in fibro patients with no gut issues at all.)

[Crankin]

Interesting, Knot. I sort of believe what you are saying. My GI issues have always been around, since my early twenties. Before I got the results of the celiac test, I actually went to the health food store and bought some of the products (bread, cereal). Both were gruesome to eat. I have been trying to eat higher protein and have pretty much cut out caffeine, which believe me, was a sacrifice. It seems like I have been actually craving carbs, although I don't eat the bad kind very often and haven't for a long time.
Thanks for the info.

Robyn

[KnottedYet]

Yeah, I tried gluten-free bread about 15 years ago, and it was exactly as you describe: GRUESOME!!!

I've not tried it again since! I do rice cakes or corn tortillas instead of bread, and use some pretty good mixes for pizza crust and biscuits and cookies and such. I might try making a batter-bread one of these days, but I'm still grossed out by the memory of the tapioca and rice breads I tried.

Tic Tacs let me down recently. Darn hidden grain products! Kept getting sick but couldn't figure out why. Maltodextrin in the Tic Tacs seems to be the culprit.

I can give up Tic Tacs, but I could never give up caffiene! You are a stronger woman than I...

[Crankin]

Well, I broke down this afternoon and had a coffee with half real coffee and half decaf. I went to bed late last night and was feeling the 3 o'clock slump, so after we went to the library, stocked up on sand for our driveway, we hit the coffee place in Concord Center. Some things I cannot completely give up!!

[EBD]

I know this is late but I wanted to second the suggestion of a link to gluten in the diet. My cousin has fibro and she has had a lot of success with nutritional changes. She saw a nutritionist in NYC with fibro-specific experience. I don't remember the details but I'm pretty sure she started avoiding gluten and sugar, and increased her intake of "good" fats (nuts, fish etc.). Also she installed a fancy water purifier, but who knows what that really did. She was pretty sick for a while, but rarely even mentions symptoms now. And has done two half-Irons!

Good luck, I really hope that you can find out what it is that's ticking your body off, and get rid of it!

[Crankin]

I am going to TRY to avoid gluten and sugar. Can't say I will be able to do it all; the sugar will be easier though. But I crave whole wheat bread. grains, etc. Give up whole wheat bagels???? This will be hard for me. I already eat the "good fats" and have upped my protein. Can't have my Clif Bar??? No matzah at Passover?

Advice, please....

[Dianyla]

I am going to TRY to avoid gluten and sugar. Can't say I will be able to do it all; the sugar will be easier though. But I crave whole wheat bread. grains, etc. Give up whole wheat bagels???? This will be hard for me. I already eat the "good fats" and have upped my protein. Can't have my Clif Bar??? No matzah at Passover?

Just set a time window for yourself and give it your best shot. I'd suggest at least a month, if not two. You'll either feel so much better that you will find that it's simply not worth eating those things, or it'll have made little difference and then you can return to your previously scheduled eating routine.

Doing a trial really is the best way to know if you have problems. I tested negative for celiac disease, but going off gluten resolved most of my IBS problems anyway. My understanding of this is that the standard blood test (transglutinase antibody) generally only registers a positive result if you have fairly advanced celiac disease. Milder intolerances may not show up in the lab test, but can still wreak quite a bit of havoc with your health.

[Crankin]

I went to the health food store today and bought some more gluten free products. Knott, I found some bread in the frozen food section that isn't too bad. Also some brown rice rice krispie cereal. I bought some gluten free pancake mix, which will probably be horrible, but, I will try. I love corn tortillas, so that's good. I am going to try for a month.

[Triskeliongirl]

If you find that gluten/whole grains exacerbates your symptoms, but it is too hard to give up FOREVER, why not apply the principles of Flexible Dieting (for example in the book Flexible Dieting by Lyle MacDonald). The idea is that what is most important is what you do 80 or 90% of the time vs 100%. Many dieters forbid certain foods, and then when they eat them, feel everything is blown and go off their diets completely. However, flexible dieters recognize that while their body many run best on certain foods, a LITTLE bit of the bad ones won't hurt them. So, someone trying to lose weight may slip and eat a cookie. They have one of two choices. They can say, well, its just one cookie and then get back on track. If they do that, it is just one cookie, a drop in the bucket in the grand scheme of their weight loss effort, and move one. Or, they can say, well, I broke my diet so I guess I should eat the entire box. Then its no longer one cookie, and then they have done themselves a lot of damage. So, maybe you could not ban the bagels you love, but restrict them to one serving a week, something you can look forward to and not feel deprived. It will also help you see if you really are sensitive, kind of like an elimination diet with challenge. If even one a week makes you feel really bad, maybe you'll choose not to, but then you'll know there is a good reason to give them up.

[Crankin]

I totally agree with you. That is how I lost 25 pounds, about 30 years ago and I've never gained it back. I guess I will have to subscribe to this theory, since we went into Boston this afternoon and I had a beer...
I am going to see yet another rheumatologist, who is part of a women's health group, associated with Brigham and Woman's. At least it's not all the way in the city, but in the suburb I grew up in. She also has experience with sports medicine, so she will understand my lifestyle. I am totally fed up with my pcp. She didn't even read the report from the neurologist I saw in Boston. Thankfully, I relayed the info. to my rheumo. in Concord and we have implemented his plan (I started a 10 mg. dose of Elavil, an older anti depressant that has been used to generally calm the nervous system down in this small dose. As he said, my nervous system is going haywire). I think the acupuncture is helping the anxiety part, because I've been able to wean down the anti-anxiety meds and feel pretty good. However, I am having other weird symptoms and I'm not getting any answers, so as long as I have the time, I am going to go on a bit more.
Thanks again, everyone.