tiredofdoctors

Hey Claire:

No Faith in Doctors should be my nickname considering the experiences I've had! I've been to both Mayo and Hopkins -- talk about pompous idiots. I've developed nysgtagmus more recently, as well. I'm having retinal degeneration (they're comprised of perkinje cells, as well) so I've started developing night blindness and colorblindness. It's odd never having had it before, trying to stare at things to see if by some chance I can see it!

Hopkins blew me off immediately. Within 18 hours of being admitted, the doctor came in to have a 1 1/2 hour talk with me about "considering that emotions can cause you to have physical symptoms which aren't rooted in a real disease." I asked him if emotions could cause Hashimoto's thyroiditis and elevated antigliadin antibodies. He didn't say anything.

Same thing at Mayo. The rat-ba****d that I saw there told me during my evaluation that I needed to think outside the box. I looked at my husband,then back at the doc and said "How far outside the box are we talking?" He then started describing in very condescending terms conversion disorder, and he wanted me to see their psychiatrist. I have ADHD, so I see a psychiatrist regularly for med checks, and have discussed the possibility of conversion syndrome with her. She said that she just doesn't see it. She has me seeing a counselor to help with adapting to this disability - I've asked her the same, and she said there is nothing I have said that would indicate it. I told the Mayo doc that, but he still wanted me to see their shrink. I did, and he said "I know what the doctor wants me to say, but I just can't see that you have conversion syndrome. You have no evidence at all that conversion is either contributory nor causitory, and that's what I'm going to write in my summary." The Neuro doc wrote a summary to my primary care doc that I have conversion syndrome. It doesn't help that I hacked him off when he said that "as physicians we try to do everything humanly possible to help our patients" and I told him that he had just hit on the key word -- human -- and that I certainly didn't expect him to be perfect, and that I was O.K. with him making a mistake. His whole chest, neck & face became fuschia, and my appointment was over. I left without much information, but satisfaction that at least I told the MD what I thought.

MS is a spinoff of this, and I think that's where the neuro here is starting to look. Sinced the signs are becoming so prevalent, validating the symptoms, he seems to be starting to take this pretty seriously. Waiting to hear about the spinal tap -- and doing the gluten-free thing 100% now. It's not too bad. I found some really good breakfast cereal "Puffins" -- but there is only one flavor that is gluten-free. Also, Kellogg's started putting wheat starch in their Corn Pops this year, but the Kroger brand doesn't.

Okay, I'm rambling . . . talk to you later!

debmidge: I am sorry I got your name wrong on my last post. I apologize. As for the neuropathy -- I have had other autoimmune issues and have Raynaud's phenomenon, so both my hands and feet get numb and blue. I don't think that the neuropathy was the initial presenting symptom of my ataxia, though.

deMidge: Thanks for the advice. I'll be there Monday Morning. I'm a physical therapist. I had the practice of my DREAMS. I scheduled each patient for one hour with me -- no 16 year old kids overseeing exercises, etc. I started with lots of manual therapy, then as we progressed to exercises, I was right there with them - watching for compensatory movements and facilitating the neuromuscular results I wanted while they were doing the exercises. I treated all ages -- from toddlers with hypotonia, LOTS of sensory integration kids, to field hockey, soccer, baseball and football kids, to general orthopedic to women's health -- I treated urinary/fecal incontinence, pelvic pain and obstetric patients. It was FANTASTIC. That has been the part that I have grieved the most. I was finally in an environment where I could practice WELL and do the very best for my patients. It was so fulfilling. Okay, all you asked was what I did -- sorry for the impassioned extras!

Hi Claire! Correction -- I can walk, but like a drunk. I stagger, bob and weave, and fall a LOT! It's like someone is turning a light switch on and off on my muscles -- they give out, then overcorrect. I use a walker for short (very short) trips, but a chair for any length of time. I also have some neuropathy/myopathy issues. The neuropathy we knew about -- the myopathy we just found out about through a second muscle biopsy. They're still puzzled in that I have a profound amount of muscle fatiguability -- as I said about the Frenkel's exercises, 12-14 minutes of work, and my muscles are jello. After posting to the message board, my arms are finished. It takes about 30 minutes to recover. Strangely, baths are the worst -- can't get out of the bathtub independently. Sounds a lot like MS, but so far I have only 3 lesions on my brain which has not changed as this has progressed, and I have a new lesion at C2-3 on the cord. No oligoclonal banding in the CSF previously. Haven't had a Tensilon test, but don't have anticholinesterase antibodies. Any thoughts????

Anytime -- we're all in this together!

I'm new to this thread, so heregoes:

First, Go Kimberly and Shirley!!!!! Since I haven't been able to work, I've been able to pick back up on sewing, cooking, canning, etc. I also have an herb garden which I started last year that is fluorishing now! Going along with the grose stuff, I also have a worm farm so I can use the "tea" for fertilizer and the compost to boost the soil. I'm going to try crabapple jam for the first time next week, but mostly because my husband really likes it. It doesn't sound that great to me! I am thinking wistfully about having acreage and your trees -- I grew up eating raspberries and blackberries off the vine when I was little -- my fingers were stained each year all season long! Don't have many helpful hints past what the experts have already passed along -- you guys are GOOD!

Hi Claire -- Any info with regard to whether the new med is for enteropathy only???

Sorry, but I forgot something -- I found a really good book -- it's called GLUTEN-FREE DIET A Comprehensive Resource Guide. It has an appendix which lists vitamins, minerals, fiber and protein content of quite a few foods. It's written by Shelley M. Case, a registered dietician, and it's ISBN # is 1-894022-79-3

I like your quote by Hunter S. Thompson. He was from my hometown. I took a class from a professor who was a friend of his. Talk about an unbelievable class!

Judging from the shopping expedition my husband and I undertook tonight for gluten-free products, it appears that you won't have any trouble at all being vegetarian and gluten-free. We were happily surprised with the variety of products available at our neighborhood Kroger, of all places. We're not vegetarian, but the majority of gluten-free products we found were vegetarian as well. In addition, we found a good deal of gluten-free protein additives which were vegetarian. (Neither one of us are very fond of meat, so a lot of our meals are meatless -- lots of Tofu!) Good luck with your quest!

Bobcatgirl: Find a new doctor. He/She is not listening. Get to an endocrinologist and have the antibodies tested. Often, you don't need a referral. You have a known autoimmune disease -- don't let autoimmune thyroid disease compound it.

Don't wait until you're my age (43) before taking up for yourself and letting the MD's know that you are there for business, not just to take up waiting room space. It's a consumer's market, and you're the consumer. Demand the best, and don't back down. I was so worried about making waves and it impacting my practice and the referral sources I had that I was completely passive until this year. NOT ANYMORE. I had to close my practice because I can't walk, much less work, and I'm NOT going to let them get by with not listening to me. Learn at an earlier age than I did. If you offend them, so what? Doctors are a dime a dozen anymore -- and none of them carry their black bags to your house like they used to, so you don't have to worry about them not coming back if you make them mad!

Put your foot down -- I'm rooting for you!!

You may want to take your kids to a physical therapist who specializes in manual physical therapy. It was my experience that frequently kids were diagnosed with scoliosis when in reality, it was their body's compensation for sacroiliac dysfunction -- the kids called it "crooked hips". I had one patient who was scheduled for surgery -- the MD didn't even look at her low back and at how uneven the tops of her hips were. We got the joints corrected, and the muscles surrounding them in balance (equally strong, equally flexible) -- remarkably, the scoliosis which was "most severe" reduced to a less than 5 degree curve. The MD didn't have an explanation for why the "remarkable recovery", but told the mom that physical therapy could not possibly have helped! To each his own. It's worth looking into, though. A lot of times it isn't necessarily celiac, but a "familial" disposition (they can't say genetic, because they haven't identified a gene that causes it) to ligamentous laxity. A well-skilled manual physical therapist will be able to explain this and show you on your children (and possibly yourself), if this is the case. Good luck to you.

I think I know how you're feeling. I'm not a Celiac, but I have Gluten Ataxia. I have spent the last year getting progressively worse, now I'm in a wheelchair. I told the counselor with whom I work that I felt like the family freak. Now that they have determined that gluten IS responsible for my condition, I told her that I'd feel like an even BIGGER freak. ("We can't have birthday cake because she can't eat it . . . " "We can't have fried chicken because she can't have it . . . ")

When I was in the hospital, a pastor visited my roommate. He was talking about Psalm 27 (and, believe me, I'm spiritual but NOT religious). But he also talked about fear. He said that FEAR is False Evidence Appearing Real. That has gotten me through a lot of this.

I read in the friends and loved ones about a boyfriend who made gluten-free brownies for his girlfriend. I told my husband about that -- he said "They have that stuff available?" I told him that maybe they did. He took me on an all-evening shopping spree tonight. We found more gluten-free stuff than you can imagine. I called my parents to tell them -- my dad was SOOOOOO happy. He said he can't wait to taste the things and that he's so glad that we can all have birthday cake together (it's a big deal in our family).

I'm starting to think it's not so bad. When you tell someone that you have a gluten-free lifestyle, you show them that you're proactive about taking control of your health, diagnosis or not. I think it shows that you're someone who is empowered and dedicated to being the best "you" you can be. Sounds hokey, I guess, but I think there's some truth to that.

I am a healthcare practitioner, and I can tell you that when I was practicing, the first 1/2 hour of my evaluation was spent listening to my patients. THEY told me what was wrong with them. The evaluation portion was easy then. I think the biggest mistake that doctors make is NOT listening to their patients. I think they should ask at least these four questions: 1) What does it FEEL like when it happens to you? 2) What makes it better? 3) What makes it worse? 4) What is the impact that it is having on your life? It has been proven that the average physician listens to his/her patient for 7.5 seconds before interrupting. Think about that the next time you're in a doctors office. Who knows you better? You, or the doctor? The doctor knows MEDICINE -- facts, signs, symptoms, and a lot of what the drug companies tell them. But does the doctor know YOU???

You're certainly not a freak or different or any of those other negative terms for taking care of yourself. You are to be admired, and for many, should serve as a role model. Sorry this was so long, but I feel REALLY strongly about it!

Thanks, Claire! It's true, having loving, supportive people around you is probably the most important part of all this. Last night, my husband went out to get ice cream for us -- checking the labels so that I can have each kind -- because we only had Gluten-containing junk food here!

Touche' with regard to the pizza! I really do think that I have a rebellion thing going on here, though -- I had never thought about the fact that I am also hurting my husband, kids and the rest of my family each time I eat gluten-containing foods. Hmmmmm . . . . different perspective, and a REAL eye-opener. Thanks for the wake-up call.

The fact that you're making gluten-free brownies for your girlfriend scores HUGE points with me! Maybe I can shed some light on why your girlfriend is doing what she's doing, because I'm doing the same thing.

I don't have Celiac, but I have been diagnosed with Gluten Ataxia. Basically, the antibodies to gluten, combined with some other antibodies, are destroying the cerebellum of my brain. I'm now in a wheelchair when I'm out, and either using a walker or using the walls and doorways to keep upright at home (I walk like a drunk, essentially). After finally accepting that, O.K., maybe the doctors are right, now I'm just MAD that it feels like my ENTIRE LIFE is turned upside down. Not only can I not do the things I used to, but now I can't even EAT THE THINGS THAT I LIKE!!!!!!! It's a stupid kind of childlike rebellion, is deleterious to my health, and the most bizarre thing is that I know I'm doing it. And not that I'm old, but I'm not necessarily a kid, either!

I have to believe that this is just a phase. I'm picking up the book more and more, label shopping much more, and kind of "easing into" the Gluten-Free lifestyle. I think because I know that the change is permanent and should ultimately never be reversed, it's really difficult to accept. When you look at the components of foods which could possibly contain gluten, you begin to realize that this lifestyle change is BIG. Being a part of a very close-knit family, it also means that my children, my parents, my sister and her family, etc. will also be affected by this -- it sort of makes me feel like the family freak. We can't have (this) because it has gluten. We can't have (that) because it has gluten. It feels as though, to attend a family gathering, we're all going to have to learn how to cook gluten-free, or else I'm going to have to bring my meals to everything!

Give your girlfriend some time -- my husband is doing the same for me. Each time I ask him to bring home a Pizza, his question is "Are you SURE?" If I say "yes" -- there's no further discussion, lecture, etc. If I say "No" or "Not really, but I don't know what else to do", he helps me decide on a better choice. I find it hard to believe that if you're baking Gluten Free brownies for her, she won't be coming around REALLY soon! Good luck, and thanks for listening to me vent, as well!

Dear Mel,

I was very lucky that, through a web of multiple specialists, I was referred to a Gastrointerologist who was empathetic, kind and thorough. I saw him on a Thursday, he did the bloodwork for Antigliadin antibodies, Antiendomysial antibodies and Antitransglutaminase antibodies that day, and scheduled my small intestine biopsy for the next Wednesday. He was a great guy. He asked me -- why are all these doctors speculating and D****ing around with the diagnosis -- do you want to find out? When I said "Yes", he said, "Let's do it." All tests were negative -- I have now been diagnosed with "gluten ataxia" or "cerebellar autoimmune ataxia", but in terms of getting a celiac diagnosis, I could not be a more strong proponent for a GOOD GI physician. Go to a Celiac support group meeting in your area, and ask for names of good GI docs. I can guarantee you that they'll know the ones to see, and more importantly, the ones NOT to see! Good luck.

Hi Guys --

Claire, thank you for the info about the blood test -- my doctors are finally listening to me, and I feel pretty certain that one of the two of them will order it. Also, good luck with the Frenkel's exercises. My biggest problem is that I have about 12-14 minutes in which my muscles will function prior to turning to jello -- it's just not enough time to complete the exercises. I am a STRONG proponent of Tai Chi. As soon as my body will accept single leg stance, I'm there! Right now, my neuro symptoms are increasing (lower reflexes are 4+ and uppers are 3+), my most recent muscle biopsy shows neuropathic changes, I've developed L'hermittes sign and I'm starting with a babinski bilaterally. If I had a crystal ball, I'd say a tap is in the not-so-distant future. I'm still with you in that gluten is probably the catalyst to all of this. Scary stuff, huh? I'm tired of being tired, and I'm even more tired of falling! I took a header off the porch the other day that was BRUTAL!

Bobcatgirl -- my sister has the same dilemma as you. She is adopted -- back in our day, all adoptions were CLOSED and NEVER to be opened. In addition, my parents are from the generation of the "stigma" of adoption and simply don't want to discuss it.

I agree completely with Claire. Monitoring would mean MRI's, etc., and it's a hassle with regard to referrals, insurance coverage, etc. Being aware IS the best way to keep in check with whether symptoms are developing. My choice to ignore the symptoms, chalk them up to "fatigue" and "overwork" cost me, ultimately, a significant amount of function. I started out walking differently -- my husband, my secretary, billing clerk, and friends all told me about it. Even my patients! Then, I began bumping into walls -- again, I was told by all. My secretary even told my billing clerk about me falling "all the time". She said she would hear a "thud" and know that I had fallen again. During the entire ordeal, I STILL chalked it up to being tired. Part of this, however, was due to the fact that I had seen a physician who was unbelievably CRUEL, and ultimately, wrong. Believing that he HAD to know more than me, I trudged forward, ignoring the symptoms. Fortunately, in January of this year, I started seeking out kind, determined physicians -- ultimately, they were the ones that suggested the link between Gluten and my neurological conditions.

Another thing that you may want to make sure is in check is your thyroid gland. I had Hashimoto's thyroiditis and a goiter the size of Texas! It started when I was 13, and by the time I was 42, it had grown to wrap its way around my trachea and down underneath my breastbone. Interestingly, my endocrinologist said that some blurred vision can be attributed to myxedema from thyroid dysfunction. From what I have read, also, Celiacs tend to have an increased predisposition to Hashimoto's -- easily detectible by a blood test. Find a good endocrinologist who won't blow you off. These days, healthcare is a consumer's market. You're the consumer -- you're paying top dollar for either the best or the worst -- it makes no difference -- so demand the best.

Another caveat -- I wouldn't waste my time at either Hopkins nor Mayo. I was completely disregarded, and at Mayo, the physician rolled his eyes when I mentioned Gluten ataxia, lectured me of all the things I would have to have to have Hashimoto's DESPITE having my history which included the post-surgical biopsy stating Hashimoto's thyroiditis, and brushed off each question I asked -- even though they were all based on sound medical research and were relevant questions. I found both places to have an air of superiority, and found not only the attendings, but the residents to be pompous and condescending.

Oh well, enough Kvetching! Good luck

Great info -- thank you. I, too, am a medical professional -- I am hoping that someone out there will have developed alternate neuropathways in the cerebellum which restores normal function. There are exercises "Frenkel's Exercises" which were developed in the late 1800's for patients with Parkinsons -- they are also used for patients with ataxia, but very few practitioners know of these. I have BARELY been responding to these, but maybe someone else can find a physical therapist who will know how to implement these and can get better results.

My neurologist has been asking many questions with regard to family history. I have a grandfather who was diagnosed with "Parkinsonism" by a quack old-time family doctor. He had the exact same symptoms as I do: Marked fatigue, ataxic gait, dysphagia, intention tremor, hyperreflexia, spasticity, dysarthria, proximal muscle weakness, dysmetria and arthralgia. In addition, he did not respond to L-Dopa or Sinemet. My father has idiopathic polyneuropathy (often diagnosed in alcoholics as Werneke-Karsakoff's syndrome, but my father is not an alcoholic). The neurologist has also asked if we have had any children born with mental retardation. That has not happened.

My limited understanding of gluten ataxia is that it may very well be linked to a genetic predisposition. Most of what I have read has also indicated that, in addition to antigliadin antibodies, you will also produce anti-perkinje cell antibodies. The cerebellum is made up, in large part, of perkinje cells. The cross-reaction of the antigliadin and the antiperkinje cell antibodies is the process by which the cerebellar tissues are destroyed.

A question which I have not found an answer to is this: Is there a blood test for anti-perkinje cell antibodies? Are the antibodies found in CSF? Are antigliadin antibodies found in CSF?

I am going to try to CoQ 10 which Claire suggested. I am also taking probiotics, and have in the past tried Biozyme and Inflaguard, which have helped with the arthralgias.

I didn't mean to scare anyone out there. Again, I have been confirmed negative for Celiac disease (multiple times over). A personal message to bobcatgirl -- I would talk to my physician about the headaches, brainfog, etc. after ingesting gluten. Also, start looking at your family tree for any neurological diseases any of your "forefathers" or "foremothers" may have had.

Another personal message to Claire: I am VERY interested in what the results are of your genetic counseling and gene mapping. In as much as I am concerned about myself, I have two children. My daughter, who is 19, has already displayed the same thyroid signs which I displayed as a teenager. My son, who is 23, had cerebellar damage during delivery (high forceps -- 9lb 13oz first born to a young mother after 48 hours of labor -- very cruel and incompetent obstetrician). He is fortunate that it is limited to a positive Rhomberg's and the inability to perform tandem gait. The thought that it could get worse, though, frightens me. Please keep me informed with regard to the findings, if it is not too intrusive that I ask.

Sorry this is so lengthy, but I'm starting to get more and more frightened -- I think that, as a healthcare professional, I have chosen to ignore my symptoms too long this time. If I had a patient with these symptoms, I would have insisted that he/she pursue this with a vengeance two years ago or more.

Reflex Sympathetic Dystrophy is a condition in which they sympathetic nervous system goes into "hyperload". It really isn't the same as fibromyalgia. The earliest written cases of RSD were during the Civil War -- it was known then as "Shoulder/Hand Syndrome". Soldiers who were shot in the shoulder would have this irretractible pain in their arm and hand.

Your friend should really go to a neurologist who will listen to her. I have had patients who have had this, and it is REALLY painful. In addition, RSD has a tendency to travel UP to the brain from the affected limb. This has been recorded by using PET scans in patients who have RSD. Once it reaches the Thalamus of the brain, it can cause all four extremities to have the same type of pain. It is then called Thalamic Syndrome, and is irreversible. Getting control of this condition is really important, and with the right intervention, is curable.

Thanks for all your input. I read the biopsy of the intestinal villi -- they are pink, healthy, and plump. B12 levels are great -- I just had them checked again. I've tried chiropractic, as well -- no luck there, so far. My biggest concern, I guess, is whether the ataxia and neurological pathologies in my muscles are reversible. If you stumble across anyone who has had their neurological conditions reversed, I would REALLY like to hear that! I'm looking for a support group in my area -- my endocrinologist suggested that I hook up with them, also, so that they can help me learn what to do and what NOT to do. I had thought I was doing O.K., but it appears that I'm not doing as well as I thought I was at reading labels.

I have been off the Celiac forum for several weeks. I am pretty frustrated. I have no antiendomysial antibodies, no transglutaminase antibodies, and my small bowel biopsy was negative. Hence, no celiac disease. The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.

I am now in a wheelchair. I thought things had plateaued, but found out yesterday from the neurologist that I'm getting worse. I've been to Hopkins and Mayo, and have found out that basically, the neurologists there pompous ( s) insert whatever expletive you choose.

Every article I have read about gluten ataxia gives a really grim prognosis for my symptoms improving. Each says that the goal is to stop the progression, but none that I've read mention return to prior function.

Does anyone know ANYTHING that can help me with this?? My neurologists have suggested (months ago) that I apply for Social Security disability, but I have refused, continuing to believe that I'm going to get better. Am I fooling myself?

Any help you can give me would be greatly appreciated

Marianne, thank you VERY much. As one of my topics stated, a second eye doctor was the one who was critical in facilitating the blood tests and the scope. He also said that I needed to have much more blood testing. I told him that I had had 37 immunological tests. His response was -- not that -- I think you need genetic testing. I'm oddly comforted by that, particularly given your answer. My biggest concern at this time is this -- by radiograph, you can certainly see breakdown of the cerebellum, and on several different views, you can see a lesion on the cervical spine (so we know it isn't artifact) -- my medical background lends me to believe that this damage is permanent, and perhaps my brain can re-route somewhat, but that to think that I will ever walk at least without a walker is just not realistic. Any thoughts or experience? Thank you again for your reply. God Bless you, as well. Lynne

Thanks for the advice -- talked to my neuro -- he still wants me to go gluten-free, so you're right on the money. There are worse things that being gluten-free: namely, not being able to walk, talk, or move. I hope that it makes a difference. At minimum, I hope it keeps the destruction from continuing. I'm already in a wheelchair. I'm still going to be searching the message board for information -- you guys are a wealth of knowledge. Thank you for your help and your encouragement. I appreciate it.

Well, the testing is over -- blood tests negative, and the small intestinal villi look perfect. The GI surgeon said there is no way it's celiac. I was REALLY hoping that this was the answer. Now we still don't know what's destroying my brain and spinal cord. My neurologist wants me to go gluten free to stop the antigliadin antibodies (they're 1.1 units above normal), hoping that will at least slow the destruction. I'm tired, squeezed out like a tube of toothpaste and disappointed. Guess this means more doctors. I'm "doctored" out. If it weren't for the fact that whatever I have can eventually kill me, I'd stop. Good luck to all of you searching for an answer. Don't give up.

I am totally in the dark with regard to the links of celiac disease and ADHD.

I do know, however, that Vincent's information with regard to the need for neurostimulants is correct. If found early enough and treated, children with ADHD have a chance to have their reticular activating system (the portion of the brain which affects ADHD) jump-started, often reducing the need for medication until eventually it is not necessary. The information I have received with regard to non-diagnosed children ("Adult ADD") is that, unfortunately, the brain has become much less pliable and the long-term prognosis for discontinuing medication without the symptoms returning is poor. The drug Strattera is a non-stimulant medication which is currently being used by both adults and children. I have older children, and both have tried this drug. Neither responded well -- they continued with poor concentration ability, inability to finish tasks, etc. I will take the caveat into consideration with regard to the linking of disease processes to each other -- good point!

(Just adding my two cents)

That is REALLY interesting. My mom was telling me about when I was young -- I had diarrhea ALL the time, but they thought it was because of all the antibiotics I took. She said that they put me on a diet of jello, bananas, baked boneless, skinless chicken breast and rice for three months in order to get my GI tract "calmed down" -- Celiac diet, or what????

I was also the "undiagnosed" ADHD -- I either fidgeted or daydreamed, but was smart enough to make good grades. My parents did say, though, that I ate my dinner while tap dancing!

Do you know of any articles I can pull with this info -- my sister (and now her two kids) have ADHD, as well (mine, too) -- and I would love to be able to give her something tangible to read.

I think it's amazing how so many things are interconnected.