Update and questions

[Kari]

Hi everyone,

This Support Forum amazes me more and more as I delve deeper into it - so many interesting stories and shared experiences. I'm starting to understand why people think of each other as members of a large family. After such a short time, I already feel like I'm in a "safe" environment where I can open up about the issues I struggle with, and can count on getting intelligent, thoughtful and helpful feedback.

I'm still very hopeful that I'll be able to manage my MC through diet, but I think it will be a lot harder than I had hoped for. No matter how careful I try to be, I keep having flare-ups. So I have finally made the decision that my next step is to have the testing at Enterolab (sp?) done. I feel that once I know with more certainty what my major allergies are, I will better be able to tailor my diet.

Now for some questions:

I've been hypothyroid for a long time and have been on synthroid for about 25 years. I can't imagine that this has anything to do with MC, but am curious to know if anyone else has both conditions.

During my recent medical check up I was diagnosed with Aura Migraines, as well as Orthostatic Hypotension. This certainly made for a good explanation of my brain fog, constant dizziness, crashing fatigue, etc.

It seems to me that both of these newly diagnosed conditions are related to the MC and was wondering about others' take on it.

The diagnosis prompted a lot of testing (heart, head, etc.), including detailed blood analysis. It turns out I'm low on B12 and Folic Acid, so I've started taking a daily multivitamin, which has both. However, I suspect that my system does not "like" this pill, so I was wondering if anyone has a recommendation.

I have more questions, but figure this is plenty for now. Thanks in advance for any insight/recommendations you may have.

Wishing all of you the best in your pursuit of good health,
Kari

P.S. I can't seem to get the spellcheck to work, so apologies for errors. One of these days I will figure out how to post a picture. It's so nice to see the faces behind the posts :). Also, having grown up in Norway, I love the fact that this is such an international forum.

[tex]

I've been hypothyroid for a long time and have been on synthroid for about 25 years. I can't imagine that this has anything to do with MC, but am curious to know if anyone else has both conditions.

Definitely! As a group, we are about 7 times as likely as someone in the general population, to have a thyroid problem. That's a pretty strong correlation with MC.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783

Note that the statistics that I quoted in a subsequent post in that thread, are now off by a couple of points, (due to additional members responding to the poll, after I wrote that), but they are still close enough for all practical purposes.

A few members have orthostatic hypotension, and a couple have even been diagnosed with POTS, (Positional Orthostatic Tachycardia Syndrome).

Migraines though, are much more common, and have definitely been connected with gluten sensitivity, (gluten can cross the blood/brain barrier). When I was reacting, I often had severe migraines on many days, if I was unable to stop them before they really got going. They stopped occurring, though, after I removed gluten from my diet. About a year and a half ago, I made the mistake of eating corn chips that contained MSG, and I began having acephalgic migraines, (migraines consisting of an aura, but without the pain). Research shows that for some people, as they age, they begin having acephalgic migraines, rather than the conventional type. Anyway, I cut out the MSG, and I haven't had an aura since. That tells me that they are definitely gluten-related.

The best way for us, (with malabsorption issues), to take B-12 and folic acid, seems to be by means of sublingual lozenges. Sublingual lozenges are designed to dissolve under the tongue, where the active ingredients are absorbed directly into the bloodstream, (thus bypassing the malabsorption problems in the small intestine). I have often used a sublingual lozenge that contains 1,000 IU of B-12, and 400 IU of folic acid, which is an ideal ratio. Another option is to take a product called Metanx, which is available by prescription only. It contains megadoses of vitamins B-12, B-9, and B-6. (B-9 is folic acid, of course). This treatment is targeted at patients with diabetes, who have peripheral neuropathy. It is claimed to be able to reverse at least some of the damage consistent with peripheral neuropathy. I have been taking it for slightly over a year now, because I developed peripheral neuropathy from gluten, and it became so severe that my lower legs, (from my knees down), no longer had any reflexes, and my feet were incapable of feeling pain, (such as a pin prick). In may, (after taking the Metanyx for approximately 9 months), when a neurologist checked me out, my reflexes had returned, and while my feet didn't have perfect sensory perception, at least I could feel a pin prick at any location. I intend to continue to take the product. It's not sublingual, but the doses are so huge, that the body absorbs enough of it to do the job, even when malabsorption is present.

Your spelling appears to be exemplary. The Spellcheck uses a pop-up window, so in order to use it, you must have your browser set to allow pop-ups. That might be the problem

To upload an avatar, that can be done in your profile, toward the bottom of the options. In order for an image to be accepted by the system for uploading, an image file must be less than 6KB in total size, and a maximum of 80 pixels per side. If you have problems with it, or would rather not have to fiddle with it, just e-mail me an image file, and I'll be happy to resize it, crop it, and anything else that needs to be done, (include special instructions, if you wish), and I'll upload it to the avatar gallery for you.

I agree - it definitely helps to be able to learn how people in other countries are able to deal with these issues, and it can sometimes be very enlightening to learn about drug availability, cost, etc., and medical care in general, in other countries. Besides, it's just plain neat, to be able to exchange ideas and thoughts with people in a similar situation, no matter where they might be, anywhere in the world.

Tex

[Kari]

Well, I just ordered tests from Enterolab. It was through their website that I figured out the MC/gluten connection 2 months ago. I didn't want to order tests at that time, since I knew nothing about them, but after seeing all the positive comments on this board, I feel confident that the lab is reliable?

Thank you, Tex, for taking the time to give me a detailed response to my issues. I will try the "under the tongue" B12/Folic Acid recommendation. Have a feeling that I'm reacting to something (perhaps binding agent) in the multi vitamin.

It was interesting to hear that there seems to be a thyroid disease/MC connection. My hyperthyroid condition (turned to hypothyroid after treatment) came on after going through a very stressful situation. I was told that this disease tends to run in the female line of the family, which can be verified in my case since my mother's sister had it, as well as my sister's daughter. So there seems to be a genetic predisposition, which then is probably triggered by stress.

Thinking back over my life, I have always had a sensitive stomach and stress has consistently made itself felt in my gut. However, I believe that catching a stomach virus in Egypt 10 years ago is what brought on the MC. My husband's sudden death shortly thereafter certainly added the stress component.

Thanks again for your kindness in responding and sharing your knowledge.

Kari

.