Neurological Consequences

[cyndeegreen]

A previous post about the neurological consequences of gluten ingestion leaves me stunned.

3 years ago I was diagnosed with Celiac disease after years of my immune system attacking itself. It resulted in me losing some pretty important body parts within a 18 month span of time. Tonsils, gallbladder, uterus and 1/2 a thyroid. Then I suffered a lacunar infarct of the brain. I still have residual left sided weakness. I am 34 years old and was very, very athletic. I am growing stronger.

I inadvertently shoot myself in the foot so many times. Hair conditioner, make up, listerine...basic everyday products have the ability to make me so ill. I check, and re-check but still manage to miss that one ingredient....that contains wheat or a wheat derivative.

The side effects of that accidental wheat ingestion is so immediate and potentially life threatening. I am my most important factor in staying healthy. I say I wish I had a better doctor, one that understands Celiac...but I realize that I am my best advocate. I just wish that my constant office visits didn't make me feel like such a hypochondriac and It isn't as simple as just "staying away from wheat."

For 5 years I lived behind a silo that stored wheat. Trains would come and go, load up on wheat and drive away. The dust was thick in the air...I can remember the haze as I would leave my house. The dust alone was slowly poisoning me.

I have had so many doctors suggest that prozac pill. But I wasn't depressed! Just ill and getting worse. And then, thankfully, that one great doc who recognized my illness. I moved away from kansas and am in the process of teaching my new doc. about celiac. And juggling hyperthyroidism, and recovery from a stroke.

Things could be worse. The days are better... My body has adopted the zero tolerance stance--and it is the days when I am not diligent that I suffer.

I've been weighing the celiac neuropathy idea...compared to the infarct (which I was shown on the M.R.I.) and wonder if my doctors shouldn't reconsider.

[tiredofdoctors]

Wow -- you have certainly had your share -- Why was 1/2 of your thyroid removed? Do you have continuing autoimmune thyroid disease? According to my neurologist (one of them), autoimmune thyroid disease is NOTHING to be taken lightly. He even called the Ear, Nose & Throat surgeon who was performing my thyroidectomy to ensure that he not only took out both lobes, but he also took out the isthmus (small portion that connects them that, evidently doesn't get removed) as well.

I had posted a fairly large list of articles with regard to the neurological manifestations of Celiac. I'll try to find it -- if not, they're really easy to look up. Look up antigliadin antibodies and neurological manifestations and you'll get an entire PAGE of information. The best work is still being done in the United Kingdom. The guy there (Dr. Has . . . . ) was ridiculed as a quack 5 years ago . . . . I think I even said in the post, "who's quacking now" (I remember now . . . someone was saying that they were ranting -- but it really wasn't such a rant . . . .)

[cyndeegreen]

Lynne,

Thank you for answering! And thank you for some insight.

I had a colloid tumor removed (cold nodule). FNA was suspicious ( my grandmother died of thyroid cancer). I went to Mayo for a second opinion where they decided to remove the left lobe only. Though my right lobe was multi cystic. The tumor was benign, but about the size of a large "Daddy" marble. Radiation therapy was not suggested or offered. Since then I have had fluctuations from hyperthyroid to hypothyroid, though I still teeter on hyperthyroidism. Just recently, my eyes have started to be effected, and I am awaiting an appointment to the ONLY endocrinologist in Northern Michigan. The right side has visably enlarged in the past month. *sigh* At this moment, my thyroid shows it is in completely normal ranges. When I ask for a sTSH, everyone scratches their heads! AAAARRRGHHHH. I was told by Mayo that the thyroid disease could be watched by any general practitioner, but now...I'm not sure... Crossing my fingers that I get a call from the endocrinologists office and they don't brush me off. The enlargement alone concerns me.

Thanks for letting me vent!

[Sophiekins]

Hi Cyndee,

the post was mine, and I apologise if I scared you. . . that said, NCD is serious - as you've no doubt discovered. I'm no medical practitioner, but I have a hard time believing that none of your other problems are related to the celiac disease. Start with a visit to this site Open Original Shared Link where they are really friendly and extremely helpful. I know that there is a neurologist who works with NCD (and more importantly, believes in its existence!) in Chicago, although I'm not sure exactly where. . .someone at that link should know. And Mayo is notoriously NCD-skeptical. . .

And I completely get where you're coming from - it would be SOOOOO nice to have a doctor that understood SOMETHING about celiac disease - I'm in the process of educating GP number 9. . .not counting med students, specialists and dentists! And while we all know that we are our own best advocates. . . wouldn't it be nice, just once, to go to a doctor and get an answer instead of giving them? (And if it makes you feel any better, I have a friend with celiac disease who lost her gallbladder, liver, pancreas, part of her stomach and intestines, a kidney and had open-heart surgery before they figured out it was celiac disease. . .)