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Lou Gehrig's Disease and Gluten

Monday, March 28, 2011

The Doctors Part I:

After I was diagnosed with celiac I thought a lot about how many doctors I'd seen for my seemingly unrelated symptoms.

As a child I saw doctors for recurring sore throats which ended with my tonsils being removed. Mom thought I had the sore throats because I sucked my thumb from baby til the age of about 12. But the thumb sucking and trichotillomania were symptoms of anxiety and imbalanced neurotransmitters.

I saw numerous dentists for my amalgam fillings, root canals, and crowns. Current dentist says keep doing what I'm doing as the hygienist barely scrapes anything off my teeth. I have retained baby teeth and I'm all about holding on to those baby roots for dear life! I cannot afford new teeth/implants which are at least $2-3k each.

Even though I had recurrent laryngitis and bronchitis as a tween, teen and adult, I just rolled through it, except for one particularly bad bout w/walking pneumonia/antibiotics. I coughed for about 8 months after ... otherwise, no docs.

Before I got married I had to see a gyno for the first time so I could get the pill (I was scared to death!). He told me I was obese (at 180 lbs) and told me about patients who had lost 100 lbs., that I could do it. Find bread w/more fiber he said. I don't even remember his name, or I'd send him quite a letter. :P I went to Amer. Weight Loss Systems, ate 500 cals a day, and lost 40 lbs before the wedding. (Speaking of 500 cals a day: what crock the HcG diet is, right? I mean, my current nutritionist, for whom I had high regard, recommended it to me - said I wouldn't be hungry. He went down a few notches in my book. I could very easily eat 500 calories a day and not be hungry, no problem, but my experience tells me that starvation is not healthy - duh! Been there, done that, yada. You only gain the weight back.)

I spent a lifetime crying about my weight and body image. (Another tangent: Funny story: I had reached my last straw and decided to write Richard Simmons when we moved to LA. He and Oprah were my tv friends. LOL Change is hard for me and I was very, very depressed; desperate for understanding. I wrote out pages of my life w/pictures and an S.O.S. for my life. I waited with baited breath ... I thought he'd take pity on me, take me up in his sweet loving arms and hug me better: encourage and motivate me. I held my breath for a ray of sunshine, some hope!

... a week later I got the package returned from the P.O. for insufficient postage.

wah-waah. I was devastated. LOL. Since my diagnosis I know now the source of my depression, but can't help but think of all the wasted time in my life crying and being off the correct health pathway!)

Okay, back to the story: fast forward to having been married eight years, we've moved, bought our first home, our first dogs (Bert and Ernie, the apricot poodles - such joy), and now getting pregnant. I have to find another gyno. He's a good lookin' guy, married and has at least 7 kids I hear. All the neighbors go to him. But why do I have to take 2 hr naps in the middle of the day to get through the day, doc? He checked me for diabetes, and nope, that was the end of it. C-section on Apr 7, 1989. I just lay there, my body not getting into childbirth, much like my numb skull. When the nurse put her before my head, I didn't know what to think except, um, Hairy! Much more hair than I expected. Oh? Kiss her! That's what the nurse was saying. I was choked up and shed some tears at how cool it was to make a human being. Life is A-mazing.

Bones and muscles were hurting, head's numb/foggy, craved ice-cream, got my first and only yeast infection, moved like a SLOTH (undiagnosed thyroid!), HIGH anxiety, miserable, sleepless and tired. Baby is hungry every two hours, colicky and vomits when she cries too much, much to my chagrin in the middle of the night. Clean baby, bedding, dog cleans carpet before I can too many times. Ernie also liked used diapers and could fenagle them out of the trickiest trash can. (Bert'd died, but that's another blog I'll never get to.)

I was on a path of ill health, but pregnancy, childbirth, and subsequent lack of sleep really got the ball rolling.

There are a lot more doctors between childbirth in 1989 to 2006, but I'll save that for another blog entry.

So after my CD diagnosis in 2006, I wanted to write all my doctors to create awareness about CD. I was too tired, so I called them and left messages. Not as lasting - oh well. I am more friends with a Friend of the 2nd OB, but am friendly with doc's wife. I told Friend how it was a tragic missed opportunity my CD wasn't caught earlier with doc since I rarely went to docs; how my life might have been better, sooner. This OB went on to make a lot of money and live very well for his hard work, but like any of us, he only knows what he knows. I'm sure my info wouldn't have been received as seriously as I intended. Friend doesn't understand is my guess.

At some point I asked Friend about how their family was doing, and come to find out he was diagnosed with ALS or Lou Gehrig's disease. It's a death sentence. You know me :), I googled, and sure enough there was a guy out there with an obscure, personal website who thought gluten-free diet was helping his ALS. I hurried this info to Friend to send to doc's wife, because I know sometimes brain lesions are caused by gluten (mentioning MS patients). Doc/wife were in Germany seeking alternative treatments at that time. I kept asking her to send it on, but I don't know that she ever did. People are skeptical, I understand, but argh ... trust me!

There is more research coming out NOW, but it's too late as he's dead. It's a shame to the community and his family. He was a good father and man. Usually it's the mom who is the center of the family, but in this family it was him. Doc's wife is still devasted and broken. My last visit back to that town, I ran into his brother and held my breath not talking, as I usually do.

More info from The Celiac Nurse: , and of course, you can google more references. They're out there. A ketogenic diet often used for epilepsy is supposed to help also. No gluten, no sugars. Bits and Pieces:

I remember when I was excited about almost reaching 200! I am almost to 180-ville!!!!
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Member Comments About This Blog Post
    Keep telling your story Dots, so many need to hear it.
    2361 days ago
    Interesting stuff. I am just beginning to learn about what wheat and grains are doing to my health/have done to my health. I will check out the .url. Thank you!
    2364 days ago
    DOTS! Miss you!!!

    It's too bad people aren't as informed about cutting-edge treatment options. Keep on giving woman! You're a wealth of information, it's unbelievable. It's disheartening to think how many people might miss out on greater well-being or disease-slowing by not at the very least listening to the wisdom of DOTSwoman!

    My best friend is dealing with a family member with ALS who has just been put on morphine and hospice. It's obviously too late for him to try anything else, but I really hope the research progresses. I am eating pretty gluten-free these days and I appreciate your knowledge in this area, guiding me along in this area.

    It has sure been a while since I've been on SP and I just noticed you're down 8 more pounds. A-mazing chica! I'm so so so proud of you. Keep up the amazing work, you are just rocking this!

    love ya!
    2371 days ago
    Wow, ALS disease and Gluten.

    I had an uncle who had ALS, it was a horrible thing to see a person like that. He is gone now too, I wonder if this would have helped.

    Once when I was in my 20s the doctors thought I might have ALS, I remember the fear and the intense tests. They never did find out what was causing my symptoms.

    years later I was diagnosed with a wheat allergy, and gave up all gluten. My newer doctor believes I have CD, but I won't start eating gluten again just to find out.

    I lost a ton of weight, and then last year I gained 40 pounds in 2 months. Come to find out I have fructose intolerance too. Finally, it got so bad my body decided it needed to store as much as possible because I wasn't absorbing anything.

    Now I'm on the road to recovery for this too.

    Thanks for sharing.
    2371 days ago
    Very funny and interesting. It's nice to see you doing so great now that you are on the right path. Of course you would have never gotten there had it not been for your own persistence and research. I have seen that happen on too many occasions. Patients having to tell their doctor what is wrong with them. LOL. Not a good thing. That's why we need more female physicians because women have intuition and men don't. My last boss hated that I had intuition and he didn't. God knows he would have purchased it had it been for sale or developed it if there were some method to gain it. But he mainly grumbled and said things like, "How do you know these things??!!!!" ALS is horrible. I would think that someone with it would try anything that might help.
    2373 days ago
    That is eye-opening! My mother passed away from Lou Gehrig's Disease a couple years back. She even lost her ability to speak. I am so sorry for your friend. Horrible, devastating, cruel disease. I am thankful for the doctors and scientists who work tirelessly to try and find not just a cure, but the cause.
    Thanks for sharing.
    2373 days ago
  • BOBF15
    Dot, this was an absolutely amazing blog. I felt such pain as I read it. You have been through so much and now you just shine. A trophy indeed emoticon

    I particularly appreciate your transparency, it will be such a help to others. Seeing some one else come through the storm only serves to help any one else navigate rough waters.

    We know oh, so little about health, medicine and the human body. Again, a new connection. This is all the more reason I choose to follow God's pathway for health. I truly believe we know so little that instead of our feeble human attempts we just need to follow what was originally designed for our benefit.

    I love the quote form Sir Isaac Newton, for it so aptly describes where we stand even today in the field of health, nutrition, and medicine.

    He said, "I feel as a child standing on the shore and finding an interesting shell here or a curious stone there, when all before us lays the great ocean of truth yet undiscovered."

    What humility, and what a sad thing so many M.D.'s lack this humility. emoticon
    2373 days ago
  • RHALES199
    Hey girl--- way to go on almost getting to 108- ville!!

    I *hopefully* get to finally go to PF's Changs next weekend... we are going to a convention in downtown Boise, and will be staying downtown (yes, we live in Boise, but when it comes to convention, it's much easier to stay at the hotel!)
    I looked up their gf menu online a few weeks ago (and already got my Warrior card in the mail! lol).... nice selection.... yummy... but pricey...
    Anywho, I'm looking forward to hopefully finally being able to go there!!!!!
    2373 days ago
  • -SHAWN-
    Many hospitalized with schizophrenia , were found to need iodine! The things we don't know outweigh the things we do know by an amount that's just too high to even count to!...

    Dot I always love reading your blog... So according to my doctor my sprue antibodies or whatever they are called were normal... he said I had no celiac or gluten sensitivity, I told him I hadn't had a grain in a month, and he said that would NOT change the negative test results.

    How does a person have baby teeth... I don't understand that, the adult teeth are in there place??????

    2373 days ago
    The thing that always blows my mind is that often people with schizophrenia respond very well to a gluten free diet and the voices that they were hearing just go away. Just think of all those people institutionalized when something as simple as a gluten free diet would have worked.
    2373 days ago
    It's so frustrating, isn't it? Diet should be the first thing doctors look to in treating disease, but it's usually the last. Kudos to you for your success!
    2373 days ago
    emoticon emoticon
    I just loved your blog. Too bad friend
    didn't take your advice. You tried.
    Live your life to the fullest.

    Hey about the baby teeth - my son is 23
    and has never had a filling and still has
    baby teeth too! My mum's sister is 84
    and she still has one as well. So good
    genes maybe. Hang on to them. emoticon

    Do you know anything about amalgam
    being bad for one's health? I asked a
    dentist to start changing them but he
    said no... Let me know if you know.

    HAve a great week and can't wait to
    read more of your insightful blogs. emoticon
    2373 days ago

    Comment edited on: 3/28/2011 4:19:59 PM
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