tiredofdoctors

To those people in my family who will understand, I tell them that it is an autoimmune disease. To those who don't, I tell them that "compounds" (sounds better) that are in wheat, oats, barley & rye, and anything MADE from them produce a substance that destroys cells in my brain and retinas. I still don't think they understand, but it sounds bad enough that they just say "Oh . . . . ." To people in restaurants, quite frankly, my daughter is the one who is more vocal. She tells them about my condition, that it is a derivative of Celiac, and that it is CRUCIAL that none of my food comes into contact with . . . . . So far, it's been pretty easy. Of course, I've only been gluten-free for 3 weeks.

Hi Lindsay -- Welcome! I've had autoimmune symptoms for years that just went undetected because I used to be a very passive patient. I started having neurological symptoms a 1 1/2 years ago, starting with my eyes, we think. I started having difficulty walking around September of last year, then things progressed from there. The first neurologist I saw diagnosed me with autoimmune cerebellar disease. The second opinion neurologist said "you have celiac disease" and told me to go gluten-free. I went to a GI doc -- I was confirmed non-celiac by bloodwork & biopsy -- BUT -- and here's the caveat -- Claire's statement about what her neurologist said coincides with both of mine -- if you have elevated antigliadin antibodies regardless of symptoms or not, you must go gluten-free. Perkinje cells are the cells which are in the cerebellum of the brain and the retinas of the eyes. They rely on Gliosis -- a process involving gliadin. With antigliadin antibodies, you then develop anti-perkinje cell antibodies -- and then the destruction begins. I should have listened to the doctors here in the very beginning when they told me to go gluten-free. It's not that hard, really, and it's rather healthy! Surround yourself with docs who are knowledgeable about not only "Celiac Disease" proper, but the ramifications of gluten intolerance. (By the way, I have a post earlier about Mayo and Hopkins -- you might want to read it -- but it's basically a rant!) Good luck to you, and keep (us) posted. BTW: Claire is really knowledgeable about this -- she has given me really good info, and an occasional reality check!!

Hi Bluesky8130! Liked the response to cleaning the toaster Wish I had thought of it! I think it would be kind of funny to take it to her practice and ask her to show you how to clean it so that it's fully gluten-free!

Hi Claire! too cool about the naturopath. DC's can practice naturopathic medicine to some extent, but our state outlaws "Homeopathic medicine" My primary care doc is actually an internal medicine doc who specializes now in Rehabilitative medicine -- he is VERY into alternative medicine, has a well-rounded practice, but doesn't have anyone in his office that is knowledgeable about diet vs. nutrition (supplements). He has strongly recommended accupuncture for me. Please let me know how it goes -- I'd like to know if it helps. It actually stopped my mom's migraine headaches -- she had the kind that lasted anywhere from 7-10 days and had had them for years. It was pretty amazing, so I'm sold on the idea. Good Luck!

It's funny that you mentioned that -- I have kept in touch with one of my former professors that became my friend (I went to college at 31) -- she wants me to lecture on the exact things that you were talking about. She said that there isn't a book out there that can impact students the way that listening to what someone who is in their profession has experienced. I think you guys are right. She has had me keep a journal to document all this, and to show the frustration that patients deal with daily -- and to make future healthcare professionals realize that patients come to them not only for physical treatment, but for affirmation, for answers and for someone to be a sounding board. I am an educated healthcare provider who is being treated as though I'm an idiot. My friend says that students need to hear how physicians will talk to their patients. I have actually had to say to a doctor -- "Well, I could be wrong, but I took both my pathology and physiology courses at the UL med school with the med students. What Dr. ( ) instructed us was that ( ). Then the doctor had to somehow back out of his/her statement, realizing that BS'ing wasn't going to work in that case. (Especially when they had learned under the professor I listed).

After the terrible experience yesterday, though, I was reminded that there are Angels everywhere. I needed a tissue, so I wheeled into the Aveda store. I had my head down and asked one of the sales clerks if I could have a tissue. She said absolutely, and handed me a few. About 30 seconds later, the kindest young guy who worked there came up to me -- asked me if I was Okay, what could he do . . . I told him I was fine -- he said "Well, you look beautiful, but you don't look like you're fine right now -- how about a hand massage?" He was amazing. He got me a cup of peppermint tea (made sure it was gluten-free!) and just started talking. It was obvious that he was out of the closet -- his make-up was subtle but stunning --and he was talking about the ignorance and ferocity that some people possess. He couldn't have been over 23 or 24, but he was wise beyond his years. Listening to him, I could hear he had probably had the emotional equivalent of my experience over and over and over . . . I stopped by the card store just to get a thank you card. I wrote that people like him just make the world a better place, and told him that he probably couldn't know how much I appreciated how much he helped me. Somehow, there is always something really good that is revealed through something really bad.

Idiots are everywhere -- but so are some really fantastic people. You guys are all examples of that, as well. Thank you.

That's kind of how my hairline is . . . I think I will go ahead and get it done. Thanks for the info . . . .

Thank you guys so much. You made me feel so much better. I think that, even at 43, having my aunts complain and question so skeptically put me right back to about age 8 or 9. I know that I'm lucky that my parents are so dedicated to ensuring that I'm gluten-free. They have researched my condition, celiac, gluten-free dieting (they even made sure the pans hadn't had gluten-containing foods in them). I think it made my relatives think they were zealots. They're not, really, they're just really concerned about my health.

As for the guy, I think you're right on the money. Can you imagine being his family? I didn't think about that. When I became a PT, I bought a framed "successories" print about the essence of compassion . . . it said something to the effect of (my daughter took it to college with her so I don't have it handy!) be kind to the downtrodden, tolerant of the weak and sick, because at one time in your life you will have been all of these. Unbelievably -- I hope that, when the time comes that things aren't going well for him, no one treats him the way he treated me. I don't know WHY, but I just don't think anyone should be treated badly -- especially when they're down. I would like to think he thought about it last night when he went home. Maybe he did. Or maybe, when he is down, someone will help him and then he will think of it.

On a much funnier note -- the gluten-free brownies I made were great! It was a mix, and the first ingredient listed was Garfava flour -- along with a lot of other "bean" flours! My 10 year old nephew LOVED them! (My sister has taught her kids well --they're just as supportive) -- I laughed with my dad, though -- as many as he ate, he was probably up all night with gas!!!!! My dad thought it was hysterically funny!

Thanks again for the support . . . . Lynne

I am negative for Celiac, but have Gluten Ataxia. I was diagnosed with psoriatic arthritis three years ago. I really don't have anything that looks like psoriasis except inside my ears (grose.) What I DO have, though, is a rash around my hairline and in my scalp that are like pimples that bleed. Is that what DH is like? Three years ago a dermatologist said that I had "sebo-psoriasis" -- that in the spectrum of dermatologic disorders starting at contact dermatitis, it progresses to exzema, then seborrhea, then psoriasis. He said that it wasn't "true psoriasis". My neurologist has been asking LOTS of questions about the rash to the extent that he wants to biopsy it -- should I have that done???

If you've helped at all????? Are you kidding????? You have helped a LOT! I did find The Gluten-Free Bible -- I really like the references for fast foods and things like that -- but I do agree that her affluence comes SHINING through. Like we can go to the Alps. I had to stop working last year -- our only "vacation" was going to the Mayo Clinic -- and probably will be for the next 10 years! It does have some valuable information in it, though, and it's already come in handy. Thanks bunches. Lynne

P.S. You know, the flax seed probably wasn't such a great idea -- my husband and I both felt the ramifications later that night!

Boy, did everything hit home yesterday. My husband dropped me off at the Mall during his lunch hour so that I could shop for my dad's birthday present. Since I can no longer drive, we keep thinking of ways (without using public transportation -- it's not great here) for me to keep some semblance of independence. At any rate, I was at a register checking out, and having some trouble getting my wallet out of my bag on the back of my chair. A man had come up after me to return some items, and the whole time I was checking out, he was making "heavy sigh" noises, shifting weight dramatically back and forth (WAY in my personal space -- even in a wheelchair). This went on until a sales clerk came up and said "Sir, may I help you?" He looked at me and said "Yes, I have been waiting FOREVER." It was humiliating. Customers were looking at me like after he looked down. I didn't know what to do, so I turned around to him and said "Sir, I'm sorry that it takes me longer to get things because I'm in this chair. Believe me, it wasn't my choice, and if I could choose, I would be walking again." I then finished my transaction, and wheeled out of the store, sobbing. Evidently, he was pretty bad, because a man followed me out of the store, telling me what jerk that man was and to not listen to him. Still, it was the first overt experience I've had like that. I've only been in the chair since May, and people have jumped in front of me in line and things like that, but no one has ever BLAMED me because I was in my chair.

To make matters worse, I then went to my parents for dinner & birthday last night. My mom & dad are the best with regard to my new gluten-free diet and are SOOOO supportive. My mom asked "can you have meat tenderizer on your steak?" I told her I didn't think so, did she just keep one out for me? She said, "No! I didn't put it on any of them -- your steak would be grilled at the same time as the others and could get gluten on it!" There's a salad that my dad loves, but you put the dressing on it before serving it. She just left all the ingredients out in separate bowls and put the dressing out for those who wanted it. I brought my gluten-free dressing and life was good. She also had me bring my gluten-free brownie mix to her house and make brownies for me (my dad's sister was making his cake), and was really happy that I could have them. (She would have made them herself, but she has lung CA with mets, and she just had her last chemo treatment -- on top of it, after her first treatment, she got really dizzy and fell 2x, breaking her ankle and shin in 4 places -- had to have lots of surgery on it).

At any rate, my mom and I had been really quiet about the changes in the food and me having different dressing, brownies, etc. Then my aunt, who loves to complain, starts saying, "Why can't we have tenderizer on our steak? (evidently she was listening more than we thought?) Why isn't the salad put together? Why does SHE have to have HER brownies rather than cake -- my grandmother and otheraunt chimed in, and it was like my mother was sitting under a light being interrogated. Then, they started saying "I thought Celiac Disease was in your stomach" Finally, my mom just said "She doesn't have Celiac Disease -- but the gluten in food is destroying her brain and her retinas and we're doing what we can to stop it." Then they said -- she just can't have wheat -- that's it? My dad let them have it.

It felt really good to have such support from my parents, and to have them take up for me so vehemently. It just felt like I was the family freak. To have that happen on top of the shopping experience has me feeling like crawling under a rock.

Please tell me that it gets easier to take. I feel pretty horrible right now, and I am so sad.

Spina Bifida is a congenital defect which is caused by lack of Folic Acid prior to and during pregnancy. With the significant absorption difficulties celiac disease imposes, it makes sense that celiacs are at more risk of producing offspring with the defect.

I got this advice from Claire on another thread: get the book The Gluten-Free Bibleby Jax Peters Lowell. I'm not a celiac -- but I have gluten ataxia. I don't have a "fast" way of knowing I've been glutened the way that celiacs do, so I'm trying to be unbelievably rigid with regard to my new gluten-free lifestyle -- and to my resolve to live this way for the rest of my life. My entire network of family & friends knows how committed to it I am, so I'm hoping that I don't have a lot of the stumbling blocks that can come with this lifestyle.

To get back on my original suggestion Claire was absolutely right about this book. It has a variety of topics with regard to living gluten-free, even suggestions for fast food, restaurants, lists gluten-free friendly restaurants and their websites. It even has gluten-free friendly resorts!

I had told my husband about this book after reading a reply -- he found it tonight at the bookstore -- we were really glad, because we went to McDonalds right afterward to take home (you can even have McD's fries!) At any rate, it was a great suggestion and I'm happy to forward good advice.

Okay . . . . I was going to ask my physician for a referral to a nutritionist, but your experiences have convinced me otherwise!

Bluesky8130 -- I am certainly glad that you didn't have to pay for the visit, but I think you should DEFINITELY tell whoever referred you about how inept this chickie was. As far as the lactose intolerance, I have a friend who also can tolerate (only) yogurt because of the active cultures.

I have learned so much from what I've been told on the forum and from what has been recommended to me (i.e., books, research, etc.). I think that it is very frightening that someone whose profession is to counsel with regard to nutrition, INCLUDING issues with regard to disease processes, is allowed to practice at such a poor level of knowledge and communication skills.

I'm glad you and your husband have already researched celiac disease and he is already gluten-free -- by the way, how DO you wash a toaster????? I just feel sorry for the patients she treats who don't have the means and/or ability to self-teach themselves. She could do some real harm.

Shirley -- thanks for the info! BTW: my roses had aphids this year -- now I know why they were so prolific! Haven't been to Canada yet - my parents have, and LOVED it. Liked your spin on the slug swimming pool! Talk to you soon . . .

I had an endoscopy and colonoscopy on the same day -- the endoscopy was a piece of cake -- they gave me some lidocaine syrup to drink to numb my throat, then put a bite guard in my mouth so that they could guide the tube. Then they gave me medication called Versed which just puts you in La-La land, and added some Demerol to help control the pain. It was no big deal.

They didn't appreciate my humor prior to the procedures, though. I asked them that if they were going to use the same tube, would they please do my throat first. They were not amused.

I asked my GI doc about going gluten-free prior to the biopsy. He said the cells of the intestinal villi turn over so quickly that he didn't want to give them a chance to heal prior to the biopsy -- and to NOT go gluten-free until afterward.

Hi Guys --

Jen, you are close -- 2 hours -- we do the same thing 85 one day, 45 the next, 90 the weekend, then "possible frost".

Shirley, thanks for the information about the crabapple jelly--I don't have a juicer, I have a canning "ricer" -- do you think that would work, or would too much fruit get in? Also, I've never made jelly with Certo or any other pectin product. I read previously that you prefer Certo -- is that right? I think I'd rather try using that then cooking the jelly forever! You are pretty far away -- but in a great area of the country! I have a friend who lives in Gig Harbor and another in Olympia -- I think Washington is a beautiful state. You guys have LOTS of Starbucks there, though -- I was shocked when I saw a Starbucks in the middle of the lingerie section of a department store! Also, for the slugs -- do you do the whole beer trap for them? Also, we have had a huge problem with ants this year. I prefer to be an organic gardener, so I don't like a lot of sprays, but have had to use them --these guys are huge and hardy! Any suggestions???

Same here, a few times. No one can tell me why, but it just happens.

Hey Guys! Julie 5914: I have had issues with lowered DHEA levels and increased cortisol levels, so I will ask my endocrinologist about the adrenals when I see her in a couple of weeks. Thanks for the info. Claire: I was diagnosed with Sjogren's, also. Psoriatic arthritis, also -- but the neurologist is starting to be suspicious that it is dermatitis herpatiformis -- he wants to do a skin biopsy when (if?) I have another breakout. Tell me more about the book you have -- is it Dangerous Grains? or is it really the Gluten Bible?!! At this point, I have only one book, but it has been really helpful -- it'sGLUTEN-FREE DIET A Comprehensive Resource Guide by Shelley Case, RD. It has a lot of info about gluten-free foods, companies (inc. internet and mail-order), and caveats about ingredients and FDA labelling.

I made gluten-free pancakes for dinner this evening -- added ground flax seed to the batter -- my husband and I thought they were pretty yummy. (The soup I was making wasn't NEAR finished, so we opted for Door #2). I think this gluten-free thing isn't going to be nearly as bad as I thought it was going to be. I guess the dread was worse than the deed! I posted on another thread -- it's kind of like I used to cook when the kids were little -- I was "earth mom" -- made my own spaghetti (noodles), granola -- everything had to be unbleached, blah, blah, blah! I feel like I'm getting back to my roots! I'm lucky that my husband is REALLY supportive, and he likes my cooking a lot, so he's pretty excited that I'm experimenting with new recipes.

Oh yeah, Claire: thanks too, for the support and for not being judgemental about my denial. You've been a big help, and I appreciate it.

This is a really interesting topic for me -- I'm confirmed negative celiac, but have Gluten Ataxia because of the Antigliadin and Antiperkinje antibodies. Both my kids have asked if they should be tested, but neither show the symptoms. My daughter shows some of the hypothyroid signs I did as a teenager (she's 19 now), and I didn't even think about the gluten component. You guys gave very good advice -- I'm going to tell my kids to make appointments at their college medical clinics -- they'll be able to draw the labs there. Thank you very much.

Okay, the not taking the foods away from you quote must be the one thread that binds all gluten-free spouses together! My husband, who is and has been amazingly supportive actually said that, too! We came to a mutual agreement: if I am making dinner for both of us, then he'll happily eat gluten-free (he's not a picky eater to begin with, and his mother is my ally -- she told him that once we were married he needed to know that I'm the boss!) But he asked if it would bother me if we had some of his favorites in the house that contain gluten -- I told him it was no problem. That's when he said that we'd get gluten-free "goodies" for me, including breakfast cereals, etc., and he wouldn't eat them because he didn't want to take food away from me. I think part of it is that I'm in a wheelchair, and because of my ataxia and tremors have been deemed "unsafe to drive" (duh?) -- so it's not like I can just run out to the store. And I am determined that I am NOT going to eat gluten -- enough of my brain and retinas have been destroyed waiting for a complete diagnosis!

My dad did the same thing with fat-free stuff that some of the guys on this thread are doing -- he SWORE it didn't taste the same -- so my mom just started buying it and putting it in the regular bottle or jar that she kept, and he never knew the difference. Not that I condone that they didn't communicate better, but it worked for her . . . . !

I agree about not making 2 meals -- when my kids were growing up, if they told me they didn't want to eat what I made, I just pointed to the pantry -- the underlying message was "fix yourself a peanut butter sandwich". The funny thing is that, when my kids were little, I was "earth mom" -- made my own spaghetti (noodles), granola, etc. . . . Going gluten-free is kind of like getting back to my roots. I had gotten lazy with regard to healthy eating, and we ate a LOT of junk. The experimentation with different recipes is fun.

By the way, you guys sound like really fun people. Thanks for letting me participate in your group!

That sounds delicious! I'm going to try it as my next gluten-free adventure! Thanks from me, too!

Hey Pauliina! Way to go. Think of it this way: I have never been diagnosed with an allergy to Tetracyclene. When I was a kid, they gave it to me, I broke out with these enormous hives, and they had to take me to the hospital to get medicine. Did they ever do a TEST to tell my mom I was allergic to it? No Way! But they said I was. To this day, I tell doctors that I'm allergic to tetracyclene. They ask what happens - I say - I don't remember, but my mom says . . . . !!!!!

I agree about the gluten free products getting more popular, too -- Gluten-Free Brownie Mix is $4.79 here -- Betty Crocker goes on sale for $1.19!!!!! Have started gluten-free cooking -- it's pretty good. Had pancakes for dinner tonight because the I started making the soup that was SUPPOSED to be dinner too late! Added some flax seed meal to the batter -- pretty tasty! My husband thought they were great. I was also happy that I could get gluten-free bread mix -- now I can have sandwiches, too. That was one of those "Do you mean to tell me I can't even have a peanut butter & jelly sandwich anymore?" issues for me!

Take care of you -- stay strong!

Thanks for the welcome! My goal for next year is to start Raspberries, Blackberries and Strawberries. Have you guys ever made Crabapple jam before? Personally, I think it sounds disgusting, but we have a tree that's ready to fall over with the suckers and my husband really DOES like it! In what area of the country do you live? I'm in Kentucky, so fall is sort of a "concept" here! While the trees lose their leaves, etc., we often don't get a hard freeze until November.

Here, Here! My (two) neurologists here now insist that I'm going to continue to get worse and have inferred that I could develop other autoimmune diseases unless I go gluten-free. I think I was just shopping for someone to tell me that this was going to go away and that all my neuro symptoms were going to reverse -- without me having to take responsibility for it! Mostly, I wanted them to tell me it was going to reverse. I've resigned myself to "this may be as good as it gets", and, despite the disabilities, I have a really good life! And, yes, it is GREAT to have a place to ramble!

I think it might be easier for some patients to ignore what others think than it is for others. I agree that 1) It's no one's business and 2) we really SHOULDN'T care how other people react, but converting that into your personal being could be difficult, depending upon how you were raised, life history, etc. Maybe, Pauliina, it would be easier to venture out to restaurants, etc. with people who feel "safe" to you -- the friends or family that don't judge you and support your decision to be healthy. That's what I did with my wheelchair -- it got easier and easier. Most recently, I wheeled myself 10 blocks downtown from my MD appointment to my favorite fabric store. I specifically sought out one lady who I knew was "safe", told her of my accomplishment, and she hugged me and we celebrated it rather than my being ashamed of being in a chair. I'm going out to dinner only with my husband right now, because he makes me feel good about choosing to be healthy, and is supportive of me saying "can you please make sure that it's cooked (this way) and that it doesn't come in contact with (anything containing gluten)?" Have gotten some stupid looks, but my husband gives me a back-up so that I don't feel like I'm hanging on a limb by myself. Just some thoughts.