tiredofdoctors

This one is for the books. I went to my ADHD doc for my check-up, started crying about this stupid cerebellar disease among other things. Told her about my blurred and double vision, despite buying some VERY expensive new glasses (which, after all this medical stuff, we can't afford) because the doctor said that my prescription was to blame.

Turns out, my ADHD doc's husband is an opthmalogist who specializes in retinal problems. She asked me if I would consider seeing him. HELLO????? He had me go in last Monday -- saw that I had chronic iritis in both eyes. He started taking a FULL (birth to now) history. He was upset that I've had lower GI problems my whole life, yet no one had referred me to a GI doc. He calls a friend of his who is considered the best in our city, and voila -- I had my appointment today, he drew anti-transglutaminase and anti-endomysial labs, and I have an endoscope and colonoscopy on Thursday.

Saw my neurologist today, also. He said that, even if my labs and biopsy come back negative, he is concerned that the antigliadin antibodies are breaking down the perkinje cells in my cerebellum. He asked me if I would consider going gluten-free regardless. His theory is, even if it isn't related to absorption issues, the antibodies are frying my brain. I said absolutely.

By the way, for all of you who gave me the advice NOT to go gluten-free prior to seeing a GI doc, THANK YOU THANK YOU THANK YOU. When I told him that the OTHER neurologist wanted me to go gluten-free prior to seeing him, his response was -- "I HOPE YOU DIDN'T" -- that would do me no good. You guys are GREAT. Thank you so much -- if I had gone gluten-free, I would have had to wait a REALLY long time to have my biopsy.

My advice -- if you're having eye troubles, find a good opthmalogist -- that may be the quickest way to get to the GI doctor!!!!!!!!!!!!

This one must have escaped me, if I'm a celiac. I had all the classic gut symptoms throughout my childhood, but I'm a 6'1" female!

I'm sorry your dad acted out toward you. I know that in some experiences with my own parents (I had a broken clavicle that was never diagnosed. Prior to surgery, the MD asked my mother at what age I had fractured it -- she said that I had NEVER had a "broken collar bone" and she would have known it if I had, and was SOOOO defensive.) Perhaps your dad may be having a guilt pang that your disease was never diagnosed -- thinking that that they didn't do enough when you were younger. It's easier to say that it's probably not the problem and won't help than to admit that everything possible wasn't done for your children.

Thank you guys SO MUCH. I have gone completely gluten free -- with little or no decrease in my neurological symptoms. I will re-introduce gluten into my diet until I have the biopsy. That was fantastic advice -- thank you very much. For jknnej --have you had antibodies tested for your thyroid? I had a goiter from the age of 12 or 13, but no one tested for thyroid antibodies -- I ended up with severe problems, and my thyroid grew around the back of my trachea and under my sternum. If you have had any history of bowel trouble (I was diagnosed at 20 with ulcerative colitis and diagnosed at 16 with IBS), it would be worth going to someone who you know will listen to you. I drove 400 miles to see an immunologist who MISSED that I had elevated antigliadin antibodies. Good luck to you, keep trying, and if you have to dump your current MD for another, do it and don't feel bad about it! To the folks who answered with such great information, thank you again. Talk to you soon . . . Lynne

Thanks! I'm sorry you're having so much trouble, as well. The majority of the studies which I have read indicate that the antigliadin antibody has a high false positive rate -- I believe there are antiendomysial and anti(something!) which are more expensive, but more accurate. I'm having another brain MRI this week -- if it's negative, I'm going to have the small intestine biopsy. In the meantime, my MD wanted me to start the gluten-free diet regardless. So far, I've found that it's a little more time consuming because you have to make most of your favorites from scratch, but still not too bad. I think right now, the only problem is that I have such fatigue and weakness (not to mention that I can't walk more than 2 steps without lurching) that cooking from scratch is a little difficult. Hope you can get some answers soon -- the not knowing part is kind of awful, isn't it?

Thank you so much for that information. I have so many severe neurological signs -- I'm a physical therapist, had my own practice, but had to close down. I only worked about two days (cumulative total) per week for months, but finally had to realize that I was worse off than my patients. I have been really frustrated about the non-chalant "come back in two months and let's see what happens" attitudes I've gotten in the past. In the meantime, the physician's life goes on, but mine has come to a screeching halt.

Have the doctors indicated to you whether the damage which your cerebellum sustained is permanent? That is actually my worst fear. I had shown signs of mild cerebellar degredation on my last MRI, but the neurologist said that it was actually 6 months behind the disease process. I am now going to be wheelchair bound. I would like to think that if I strictly adhere to the gluten-free diet that the symptoms will reverse, or the neurological pathways will re-route.

Are you on Social Security Disability, or have you attempted it? My physical therapist has recommended that I apply, because he said that because the weakness and spasticity is in my upper and lower extremities, I won't even be able to be a receptionist. I am really reluctant to initiate that if there's a chance that I'll be able to walk and work again.

Thanks again for responding. You made me feel much better.

Hi --my name is Lynne and I am fortunate that I have finally found a neurologist who is proactive with diagnosing my condition. I have read as much as I can about Celiac symptoms, but I have some pretty disturbing symptoms that haven't been mentioned.

Has anyone out there experienced a combination of extreme fatigue, blurred and double vision, ataxia, hyperreflexia, dysphagia, spasticity, spastic bladder and intention tremor? I have elevated Antigliadin antibodies, not extreme, but elevated. My physician has narrowed do down my diagnosis to either 1)MS or 2)Celiac disease. My brain MRI in January was normal, so I am actually hoping that it is Celiac disease. I currently walk with a walker, but my physician and physical therapist have said that I am unsafe even with that.

I am hoping that someone has experienced these symptoms, because a lifestyle change certainly beats a life of continuing medication and possible permanent damage. Any replies you can offer are greatly appreciated. Thank you.