tiredofdoctors

It hadn't dawned on me about gluten-free cleansing products, makeup, etc. I do know that when I used Origins, I developed these HUGE blisters that would bleed a lot. Same goes with other products, but I didn't make any connection. I just read the threads with regard to products, labeling, etc. and paid close attention to topicals. Do topical agents containing gluten aggravate DH? Any help is really appreciated. This may also help my physician immensely. He REALLY believes in being completely gluten-free, and suspects that my "adult acne" / "sebopsoriasis" is actually DH, since it bleeds quite a bit.

I use Biosilk, too. I'll contact the manufacturer and see if I can get some info.

Do you use Dove soap only? Or do you also use their shampoo, conditioner & bodywash? Just realizing the gluten connection to these things.

I've contacted Cover Girl (I like their powder foundation) and asked about all their products, especially lipstick -- but can't get ANY good information from them -- they e-mailed me back after my asking for more specific information, and STILL had no answers. They referred me to my physician as well. Like he's going to know about lipstick. Or at least I hope he doesn't.

Hey lizzy -- I've never had that reaction, but my primary doc has me give myself B12 injections once a week so that I don't get anything but the vitamin -- no fillers, additives, etc.

Hi Shirley -- I read your post to my husband -- we're both nature-lovers and science geeks -- so we were fascinated by the crossbill story. We're going to google crossbills so that we can see what they look like. We have also decided that your pine cones must definitely yield what are known here as "pine nuts" -- They are almond-shaped, but a little smaller. The seeds which come from our pine cones are like maple tree "whirlygigs" -- only a LOT smaller. Big difference, huh? How many horses do you have? Any other animals? I think that, at heart, I'm a very rural person. When I was growing up, we were one of two houses in the neighborhood -- the rest was farmland. I can remember climbing through the fence to play with the cows in back of our house!

Jen -- I told my husband about your pumpkins -- we both were laughing hysterically! I told him that I supposed we may have to watch for that, too! I'm re-applying the Cayenne pepper every-other day -- woke up this morning (after applying and sneezing last night) to ANOTHER bulb gone! I think you're right -- we do have kamikaze squirrels. I told my son I was going to borrow his pellet gun and shoot the ones with swollen lips in the butt!

Shirley -- my husband and I were discussing your squirrels, as well -- he didn't have any idea that they were that destructive, either. He did know, however, about how fantastic your pine trees are! Are your pine cones the type from which they harvest "pine nuts"? Just curious -- they are a "delicacy" here, and are at a premium! I've often wondered, given the size of the seeds in our cones, WHERE they get them!

I don't know what your seizures are like, so I'm not at ALL saying that my experience is like yours! I can tell you, though, that I have "spasticity" in my legs and feet -- it happens when I over-exert. One doctor called it "spasms" -- but my doctors here have seen it in motion. Once it kicks in, you can't move my legs until I take medication and wait 20 minutes. My brother-in-law is a physical therapy assistant, and was at my mom's house when it happened. He is a REALLY strong guy -- he couldn't move my feet & ankles into a normal position at all. At one point, he said he was afraid he was going to break a bone trying, so he stopped. So far, after 3 1/2 weeks gluten-free, it appears that the spasticity is lessening somewhat. Good luck with this next MD -- keep us "posted"

I think it's amazing (and scary) what Gluten can do. My husband has a neice and nephew (both from the same parents) who are autistic. I called my sister-in-law last night (it's her daughter's children) to tell her of this -- they live out of town -- informed her husband of my dad's conversation -- and haven't gotten a call back yet.

My sister-in-law is a nurse, and because the MD's at Hopkins said that they can find no cause for my cerebellar degeneration & myopathy, and it is "a physical response to an intense emotional stress", she won't believe that my condition is gluten-related. Therefore, she's not listening to ANY information with regard to gluten now. What a shame.

Her grandson is the most profoundly affected -- completely non-verbal, and almost non-communicative with regard to his needs. Her granddaughter is less profoundly affected -- she says a few words -- but is 4 years old and is still unable potty train.

Bless you all -- as a mother, I can't imagine the struggles you're enduring with this. I know the pain I felt with much more mild difficulties, and I hope that the gluten-free diet helps your children immensely. Good luck to you all.

I just want to thank everyone who posts and shares on each & all of the categories in this forum. I have learned so much from all of you, and have been given the strength and motivation to begin and continue my gluten-free lifestyle. I used to be skeptical of things of this nature -- thinking it was just a place to "whine". Boy, was I wrong. I am amazed that I learn something each time I read through a thread. Whether we have communicated or not, I want you to know how much I appreciate your sharing your stories, advice, recipes, coping strategies . . . whatever it may be. It has made a big difference in my attitude toward my disease and in my life. G-d bless you all.

Jen, that is GREAT! What is also ironic, is that despite my efforts (adding manure, disgusting compost and pine needles, then a "good soaking drink of water") I awoke the next morning to three of my biggest bulbs being taken hostage. I was FURIOUS. First off, I'm kind of a gimp, so planting those suckers was no small undertaking. Then, I did EVERYTHING I was supposed to. So, I called my husband -- one of the guys he works with said his wife went through the same thing and used Baby Powder -- out goes the baby powder on the flower bed. They STILL got them. So, I reverted to Cayenne pepper, too! I've had a few small digs, but then little scurried orange foot-prints. I can't believe that last year I FED the squirrels, and this year, I'm trying to burn their lips off!

I told my husband that if that didn't keep them out of the bulbs -- bon appetit!

I tested highly positive for soy allergy, so I usually avoid it like the plague. When I do try to eat it, it does cause the same symptoms, though -- stomach cramping, etc. . . . .

I remember seeing a previous thread about Autism and celiac disease. My father called me tonight . . . he said that he had played golf with an old college buddy of his. He asked how everyone was doing, then asked my dad how I was doing and if they had found any diagnosis yet. My father told him that I had been diagnosed with Gluten Ataxia, and that it was the Gluten that was destroying my brain and retinas. Dad said the man looked at him really funny and got really quiet.

My dad said that his friend then went on to say that his granddaughter was severely autistic -- that she wouldn't look him in the eye, would not recognize that he was there, no kisses, no hugs, etc . . . most of the "basics" of autism, and then some. He said that the doctors put her on a Gluten-Free diet (lifestyle), and within 3 weeks, she was coming up to him, giving him kisses and hugs, and trying to talk with him. He said not to get him wrong -- she still has autism -- but he was amazed at the difference the gluten-free diet made. He told my dad that I was the only other person he had heard about with anti-gliadin antibodies causing neurological difficulties, and he told him to MAKE SURE I remain gluten-free! If my family wasn't sold before (they were and are highly supportive), they SURE are now!

Just wanted to share a gluten-free success story . . . Good luck to all the moms out there struggling with this -- raising kids is hard enough without the struggles of trying to keep them gluten-free -- especially these days!

Hi Lizzy -- Don't feel badly. My two neurologists here swore to me that I had Gluten Ataxia, and both insisted that I needed to be Gluten-Free. They both told me that my body was destroying my brain and retinal cells because of the anti-gliadin antibodies.

At the time, I could not accept the possibility that Gluten could cause the problems I was having. I went to Johns Hopkins and Mayo, only to have the doctors roll their eyes at me, diagnose me with conversion syndrome (psychiatric), actually document incorrect -- and in two cases flagrant fraudulent findings -- saying they did the tests and that blah blah blah. I confronted one MD at a follow-up, told him that I am a PT, know what the test is and actually perform it on my patients. I also told him that it wasn't performed on me. I also told him of the standards for which some of the results were given, and that the results were not documented correctly. There was a lot of scrambling for an answer, and he said that my chart would be "revised with an addendum". The Psychiatrist who evaluated me even told the Neurologist that it wasn't conversion syndrome, and that it wasn't brought on by severe stress. Still, the neurologist's final diagnosis was "Conversion syndrome" -- his recommendation -- psychiatric help.

Since my spasticity is reducing since being Gluten-Free, I can only guess that my little "hometown, rinky-dink neurologists" were right -- unlike the "Big Time Heavy Hitters" at Hopkins and Mayo.

My opinion of physicians -- particularly neurologists -- is extremely low. There was a time when men and women chose medicine in order to be practitioners of the healing arts. Now, with the exception of a few pearls, it is purely about greed, ego, and the pursuit of being worshipped as a G-d. The bottom line is -- most physicians do not want informed patients. They regard the internet as a source of trouble for them, and more often than not dismiss anything you present from the internet or any forum as "misinformation". Informed patients make their job more difficult. You do not see them as G-d-like, and you do not blindly accept that what they're telling you is accurate. They are then forced to back up what they said with fact. They don't like that very much.

Sorry for the rant, but I am so frustrated with hearing stories like yours. Keep your chin up, FIND ANOTHER DOCTOR, and stay with what works. Healthcare is a consumer's market -- doctors are a dime a dozen. Good ones -- well, that's another story. . . .

I think the thing that scares me the most is that many, many products contain gluten which is hidden under different terms. "Natural Flavors" "Hydrolyzed Vegetable Protein" "Maltodextrin" all can contain gluten. I am to the point that I make all my sauces, rubs, etc. My husband said that this weekend we are going to search the net for on-line gluten-free products. I agree, though -- Gluten-Free is all or nothing. It's like being a little bit pregnant. You either decide not to poison yourself and continue with the consequences, or remove the poisoning agent completely out of your life. My husband came home three days ago with my FAVORITE doughnuts, and a 6-pack of our favorite beer amongst our groceries. My mouth actually watered! I weighed the consequences -- more destruction of my brain and nervous system, and didn't even touch the box!

Butting In?????? No Way!! We're all in the learning curve! From what I've learned from my MD's standard tests may not pick up on retinal changes from Anti-Gliadin antibodies. An Electroretinogram, and two other tests (I had them done, but don't know what they are -- sorry) can tell if there are retinal changes. I have started developing night vision -- quickly and significantly. Because the retinas are comprised of a proportionately large number of perkinje cells, antigliadin antibodies can cause them to degenerate (and they do not regenerate). Stay gluten-free!! If I can find the website where I read more, I'll post it. Take care

I hope that physicians out there also realize that Gluten sensitivity can cause neurological symptoms without having true celiac disease. When a patient's body produces both anti-gliadin antibodies and anti-perkinje cell antibodies, the two cross-react, destroying the perkinje cells. These are the primary cells in the cerebellum of the brain and in the retinas, producing ataxia, peripheral neuropathy, muscle weakness (beginning proximally), neuromuscular changes (changes within the innervation of the muscles themselves), increased deep tendon reflexes (called hyperreflexia) and retinal changes, causing vision disturbances -- among others. I encourage anyone who has these types of symptoms -- despite the "classic" celiac symptoms, to have these antibodies checked. Celiac disease typically produces these symptoms secondary malabsorption -- and can be reversible, to an extent. Gluten Ataxia -- when the perkinje cells are destroyed, from what I have read and been told by my physicians, is NOT reversible. Stopping it is the only recourse. It is, therefore, extremely important to begin a gluten-free lifestyle as soon as the diagnosis is confirmed.

We have pine cones which are medium length and not too fat. If you soak them in water, they close back up, then you can cram them into wire wreath frames. As they dry, the pine cones open back up, and you get this really pretty, full wreath. We also have the little squatty, fat ones that you can hot glue, too! If we want those large, lush pine cones, we usually have to go to Florida or at least further south -- they have what my dad calls "scrubby pines" -- but the pine cones are HUGE!

Hi Danijela -- I agree with everything everyone has been saying. Antigliadin antibodies are not NORMAL, but are more common than other antibodies which are specific to celiac -- namely, Anti-endomysial antibodies and Anti-transglutaminase antibodies. Also, small intestine biopsy (a very minimal procedure where they take 4 approx. biopsy specimens) can confirm as well.

I agree with Claire -- I don't go back to doctors who laugh at me. There is a rheumatologist who is, probably within the next two days, receiving all of the "factual" (vs imagined) information from bloodwork and biopsies which proves that he was wrong last year.

Hang in there -- and DON'T give up!

Welcome Lizzy -- I think I know the frustration you're feeling with regard to the neurological symptoms. I don't have celiac -- I do have IBS and a host of other autoimmune diseases. The best I can tell you is this: my two neurologists here are considered "out there", etc. They are also the ones who spend hours with me if need be doing my evaluations. They think outside the box. My suggestion: find the "weirdest" neurologist you can find! They seem to be the ones who find the link. If you're close to Louisville, KY I can tell you that Walter Olson, MD, is a neurologist who specializes in movement disorders. He is the first person who said that there was an autoimmune component to my ataxia & tremor. Robert Tillett, MD, is also a neurologist -- I sought a second opinion from him on the advice of my sister. He is the one who insisted on Celiac disease from the beginning. When I was diagnosed negative, he continued to insist that I needed to be gluten-free for the rest of my life. Mary Self, MD, is a fantastic endocrinologist who has had another patient with Gluten Ataxia, and she also insisted that I remain gluten-free. If you're anywhere close, I'd highly recommend all three of these MD's.

Oh also, forgot: We don't have pine cones NEARLY that big. Do you guys feed your trees steroids????

We have gray squirrels. They're actually very friendly, a little skittish, and pretty funny to watch. My cousin had one that entered her house through an open window when it was very small. It became the household pet (among the other dogs). It's name was peanut. I totally freaked out when I went in her house and saw this squirrel sitting at the dog's bowl, screamed, and the squirrel looked at me like "What -- is there someone in the house?" I had a baby squirrel which had evidently fallen out of the tree try to follow me into the house -- he/she must have thought I was going to be more friendly than I was. I was running around, with it running after me (this was before I had this stupid disease). My daughter was laughing so hard, she was bent over, trying not to wet her pants. I kept yelling "Open the door NOW or you're grounded for 6 months!" She was laughing so much she had trouble getting the key in the door! Finally, I ran onto the porch, the baby squirrel ran around the shrubs, found a saucer which had water in it and decided to get a quick drink -- remembered that he was trying to get in, and then stood on the stoop of the storm door with its little front paws on the door, looking in. My daughter still teases me about the killer squirrel!

We also have lots of squirrels on campus at the University of Louisville. They are VERY tame. I feed the squirrels here (my husband says that most people want to get rid of them, I feed them -- go figure). But, it keeps them away from the bird's food. I haven't seen red squirrels, but they don't sound like anything I want migrating this way.

You poor things! You have REALLY mean squirrels! The only thing I know about getting rid of them is when you plant bulbs: cover them with compost & manure, then pine needles as mulch -- they won't touch them. (Neither would I, personally) There's a site on the internet about getting rid of chipmunks -- I had to go there earlier this summer, maybe they have something about squirrels. We ended up being lucky -- a hawk decided to make our back yard a home, and Ta Daa! No more chipmunks. Of course, we had to take our 4 lb. dog out to go to the bathroom on a leash. Now we have an owl -- evidently the rodentia population is ample in our neighborhood! Good luck -- I hadn't ever heard of a squirrel eating a pumpkin! (Hadn't heard of them eating birds, either - yikes.)

If I'm getting the jist of your topic, your husband is having a hard time "getting on board" with your gluten-free diet? I'm having the opposite problem. My husband is the one who is paranoid about the foods I eat. He has read the books more than me, and questions a LOT -- "it has ( ) in it. can you eat that?" I think it's the "fix it" mentality. When I complain with my girlfriends about something, they know that I'm just complaining. When I complain to my husband, he immediately thinks of the solution to fix it! Don't know what to tell you other than you can tell him that my husband loves my gluten-free cooking as much as my previous cooking. He honestly can't tell the difference. You may want to tell him that -- maybe it will let him know he's not alone!

I have been reading everyone's discussions with regard to psoriasis and DH. Are there places where DH is more common? Are there places where psoriasis is more common? I have been diagnosed with Sebo-psoriasis (definitely seborrhea, but not quite psoriasis), but the bumps I have on my face and scalp sound like what you guys are describing as DH. Blistery-looking, bleeding, etc. The dermatologist I went to just gave me 5 different prescriptions to put on it (mostly cortisone topicals). It made it less red, but didn't really make it go away. Since I've started gluten-free, they're not as bad -- can you still get them biopsied???