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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

still tiredofdoctors!

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About still tiredofdoctors!

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    Advanced Community Member

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    gluten-free Cooking (!), Sewing, Gardening, Scrapbooking, Research -- I guess I'm one of those "life-long learners"!!
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    Southern Indiana
  1. Shingles

    Hi Joyce, I agree with Gemini -- your doctor is a moron. Shingles is EXACTLY that -- re-emergence of the herpes virus that causes chicken pox. I had re-emergence last year of mononucleosis (only having found out months before because of a titre done that I had actually HAD mononucleosis in the past) when I was changed from IV Rocephin to IV Doxycyclene due to Lyme, three other tick diseases and mycotoxicosis from toxic mold in our former house. Any time your immune system is compromised, the herpes virus takes advantage and rears its ugly head. As far as your antibodies? I have Neurogenic Celiac -- it affects ONLY my cerebellum -- and I have only elevated antigliadin antibodies. My endoscopy showed quite a bit of inflammation in my stomach, but my intestinal villi were pink and healthy. My daughter had cysts on her liver -- they were attributed to autoimmune hepatitis. This was when she also tested positive for antigliadin antibodies. Even in the states, it is incredibly difficult to find a competent physician. Don't give up, and hang tough -- demand that you be heard. Eventually you will be, and you will find a physician who will give you the correct diagnosis and treatment. Best of luck to you. (((((hugs))))) Lynne
  2. Accutane

    I had the same great effects when I chose to let the derm put my son on Accutane. I didn't realize at the time what it was doing to his self esteem -- when I look back at pictures of him, I notice that at the time his acne was so pervasive and inflammed, he did not raise his head for a single picture. It is strikingly different than the others I have. We ended up having to use Ayr nasal saline gel with Vaseline over that because of the dryness. He did, however, have a history of nosebleeds prior to going on the Accutane, so this was more preventative. I think he had probably 15 different tubes or tubs of Carmex for his lips - but since then has said that Blistex would have been better. He plays saxophone and said that he found out through other players that there is something (and I do NOT know whether this is true or not!) in Carmex that tends to be addictive. He said that Blistex does NOT contain that. Again -- it's just what he said, and I have NO idea! He wears contact lenses, and we ended up needing to supplement with hydrating eye drops for contact lenses. When it got particularly bad during the winter, we used Genteal Gel at night when his lenses were out. I think Opti-Free also makes a hydrating solution, and CIBA just came out with lenses that are incredibly hydrating (both my husband and I just got them). He did have some difficulty with his mouth and tongue being particularly dry, but the saliva substitute made him gag! We ended up giving him lemon drops as well as Lemon Glycerine Swabs as they make your salivary glands excrete more saliva. The swabs were nice because the glycerine somewhat "coated" his mouth afterward. He DID have to go back on the Accutane about a year and a half after he had completed his course of treatment. It was unusual, according to the derm, but just wanted to let you know that it can happen -- and once he took a very SHORT round, has had no problem since. I certainly think I did the right thing.
  3. Welcome to the board. I was originally a member beginning in 2005, and I can tell you that I have encountered some of the most supportive, kind, intelligent people through this forum with whom I worked through things just like this. I met some very good friends -- and my best friend -- on here. I have been fortunate that my dietary limitations haven't been this stringent. My home health nurse, however, DOES have these same restrictions. She has a diet that is incredibly similar to Jestgar's. She also carries it in stride just as Jestgar does. While I thought the gluten-free learning curve was large (of course that was WAY back in the day!), listening to how she has lived this lifestyle for three years now made my "hurdle" seem like a small bump. I wish you so much good fortune while you are eliminating these things from your diet, and I hope you start to feel much better very soon. Lynne
  4. I just read through this thread, and at this point I am literally laughing out loud! My son calls us "The Grammar Police"! Being Southern, I can attest that "bless her/your/his heart", at least when referring to an adult, is frequently nastiness made more "palatable"! When regarding children it is more often than not conveying sympathy. It is usually then said as "Well, bless his / her little heart." There is the joke about the three women who received anniversary presents . . . the Southern woman receiving etiquette lessons. The phrase she acquired? "You don't say . . . ?" which actually means "Kiss my arse." There are so many things listed here that are my "pet peeves", as well! "Irregardless"? Drives me insane! I think it is very irresponsible on the part of television. particularly respected news programs, allowing poor grammar skills displayed frequently by "anchors". If the people who are supposed to be more knowledgeable with regard to history as well as current affairs model such poor grammar, who are the up-coming generation's role models? (Other than rap stars!)
  5. Lyme Disease Lab Question

    I agree with Mtndog. It's a definite read. I DID just post on a thread regarding POTS (Postural Orthostatic Tachycardia Syndrome) - the "root cause" of my sero-conversion to true autoimmune celiac. It may or may not be removed, but if it is there, might be worth reading. The prednisone I took for YEARS along with Methotrexate and Enbrel for Rheumatoid (another autoimmune disease) actually caused my Lyme, et. al, to proliferate, and DEFINITELY skewed the tests.
  6. I have had autonomic dysfunction for five years now. I was also diagnosed with celiac five years ago. Two and a half years ago, a cardiologist -- knowing that I have had was was diagnosed as "autonomic heart dysfunction" by her -- decided to perform a tilt-table test. My neurologist attempted to contact her numerous times to coordinate information, but his calls were declined. After having a fairly normal test, while I was in "almost standing" (15 degrees shy of upright), I was given nitroglycerine. To put it mildly, all He** broke loose. My blood pressure - which is now low anyway (usually 90/54), went down to 50/14. My heart rate went up to 186. The nurse called for the crash team, and the amytryptilline (think "Pulp Fiction") injectable was open and ready to go. I sustained minimal consciousness during this and remember at one point when the nurse asked me if I was still with her, I whispered, "Barely." I was fortunate that everything started resuming toward normal prior to the initiation of these interventions. All of that being said, I have to say that I agree with LymeToo. I was MIS-diagnosed for six years with Lyme, Babesia, Bartonella and Erlichia. These are all tick-borne diseases that I incurred through ONE BITE when I was hiking in the White Mountains in New Hampshire. Please don't get me wrong -- the type of celiac I have has wreaked havoc with my cerebellum. It destroys once protein on ONE CELL (the Perkinje cell) of the cerebellum. This particular protein so strongly mimics gliadin that when you have elevated antigliadin antibodies, it begins attacking your body, as well. The interruption of transmission because of that is tremendous. It IS a type of celiac, and it IS an autoimmune disease. It is also what caused my autonomic dysfunction, as the cerebellum - as the "Grand Central Station" of your body - regulates that, as well. The MD who correctly diagnosed me said that the "watershed" of autoimmune diseases I developed -- including celiac -- is one of the common manifestations of Lyme. I realize that this is NOT a Lyme forum, not a topic for such. I just know that the "root cause" of my sero-conversion to true autoimmune celiac disease is this. Best of luck to you with this. I know -- too well -- what an awful condition it is to live with.
  7. Wow!

    I agree with Ravenwood Glass -- sometimes the changes ARE amazing. I think you may find, as time goes on, that you will recognize that more of these "subtle" side-effects of celiac resolve. Best of luck to you!
  8. I am so sorry that you are going through this. Although awareness of celiac disease in general has increased dramatically since I was diagnosed in 2005, I think the actual understanding of it as an autoimmune disease -- and some of its ramifications -- still has a way to go. I have "Neurogenic celiac" -- or "Sprue-Related Ataxia" -- or "Gluten Ataxia" . . . depending upon the physician with whom you speak! Basically, it it destroys one protein of the Purkinje cell in the cerebellum. Unfortunately, it wreaks havoc with my autonomic nervous system. My son is 27 years old and lives in Houston. While he had an endoscopy and colonoscopy, and we THOUGHT the physician who was in the process of diagnosing him was being very pro-active with regard to possible celiac, we found out that no blood work or testing of any other kind was done concerning it. It just happened that this MD was out and his partner "filled in" during my son's visit. He "went off" was my son's description when he found out that nothing was done with regard to celiac despite my confirmed diagnosis. Because his villi were healthy, no lab work was completed. It is definitely a BACKWARD way to diagnose. My son is now being tested for celiac as well as a plethora of metabolic disorders. I do have "malabsorption syndrome" as well as some metabolic syndrome. Both of these started AFTER I sero-converted to true celiac. He was told that often celiac patients DO have metabolic changes, and was told to start taking an Omega-9 supplement (we laughed - I was finally told last year that I needed that!) and was also told to take a tablespoon of olive oil prior to each meal. This was on Wednesday of last week, and I haven't heard whether he has had any success! If you'd like, I'll keep you posted through PM's . . . Additionally, yeast issues -- according to my pharmacist who also got a doctorate in homeopathy -- abound in celiacs. He recommends taking an acidophilus / lactobaccilus (sp?) supplement daily. My personal physician has me take four times the recommended amount (I also have several other conditions that require me to be on a LOT of antibiotics right now). I take Culturelle IgG -- two capsules two times daily. It has made a real difference with regard to clogging. I also forgot this part -- because of the autonomic component that I have with the celiac . . . and oddly they found this with my son during his colonoscopy -- we both have issues with large intestine "spasm", and mine has been diagnosed also as "spasticity". He was given .5 mg of Klonopin to take 1/2 hour prior to eating to reduce that. I take 1 mg three times per day (also to control seizure activity as well, though), and I also take 20 mg of Baclofen as needed for either gut or skeletal muscle spasticity. I still find it unbelievable that one hour after taking the Baclofen, even if it has been DAYS that I have been "clogged" -- I will begin to have very normal movements. SEVERAL very normal movements that are . . . . ummm . . . . well--- toilet-clogging. (So make sure that you are at home if your MD starts you on this!) I hope that I have not provided WAY too much personal information(!), but I also know that it appears, at least with both my son and me, that celiac sometimes isn't an "isolated" diagnosis. I hope this issue resolves as quickly as possible for you. Please know that living a gluten-free lifestyle doesn't mean bland food forever . . . it gets better and better. Best of luck, Lynne
  9. Gluten Free Poll

    I've lived a gluten-free life for four and a half years. My antibodies are checked fairly frequently, so I'd say it's less than five. The only liver problem I have had was just recently - I'm being treated for a variety of diseases and developed Mononucleosis on top of it -- it makes your liver enzymes skyrocket. No. Won't do it. The damage it does to my cerebellum is not worth ANY cheating. There is a woman who lives in our city who has neurogenic celiac. It was before they discovered there is such a thing. She is bedridden and on a ventilator because her cerebellum can't coordinate her breathing. I want to live too badly to EVER cheat. I'm 47
  10. It's Just A Marketing Fad, Just Like Atkins!?

    Just before I got online, I heard my mother talking with my daughter. She is going BACK to the GI doctor. She has been tested for everything from A to Z. I asked her if she had told the GI doc that I had celiac disease. She said, "No." I said, "Have you been tested for it?" She said, "No." She has the big D all night long -- but didn't disclose to the GI doc the FIRST time she saw her that her daughter has Celiac and hasn't been tested . . . . Sheesh . . . .
  11. It's Just A Marketing Fad, Just Like Atkins!?

    Kristi -- Thanks for the information! You are the FIRST person who has actually informed me about that. The primary neurologist I saw for the longest time DID note the cerebellar degeneration. The neurosurgeon he sent me to said that there wasn't. I saw another neurologist for a second opinion because my sister -- a workers' comp adjuster - didn't like my primary. THAT neurologist was the one who eventually fired me! He told me that there was no cerebellar degeneration and he was the one who yelled at me about the MS. Also, I had nuchal rigidity from the lyme -- couldn't put my chin to my chest -- and he INSISTED that I was trying to be diagnosed with MS. I told him that I didn't WANT to have MS -- but I DID want a correct diagnosis. The last neurosurgeon I saw was one I shadowed during my last clinical at the children's hospital here. He actually SHOWED me= placing ALL of my MRI's up - the chronological cerebellar degeneration from the Celiac. He didn't know about the UBO's, though. I will give him a call tomorrow and tell him this. He's VERY open to learning from his patients. I'm fortunate. You are so well-informed. I really appreciate you. While I'm NOT happy that I have the spots on my brain (that DID keep getting bigger -- the last neurosurgeon mentioned that, as well), I AM happy to know WHAT they are, WHY they are there and that they won't get any larger because I've been gluten-free for so long now. Thank you VERY much. ((((((((hugs))))))), Lynne
  12. In retrospect, it is hysterically funny that I DID say that to my veterinarian! At the time, though, I was so frustrated, so angry and so TIRED of being treated as though I was a hypochondriac Physical Therapist with too much knowledge. Now? I do laugh that I told him that. Every time I see him with one of our dogs, I say, "Are you willing to take me up on my offer yet?" We both laugh! Glad I could help you laugh, too I think every now and then we ALL need some comic relief Take care of yourself, Lynne
  13. Dr. Kenneth Fine (enterolab)

    I had debated as to whether I was going to post this, but as a lot of people know -- I can't control my impulsive fingers! Approximately 20 years ago, I had a friend whose two year-old was diagnosed with Celiac disease. It was confirmed with all three blood tests, endoscope and diet elimination. With ALL OF THAT, the pediatrician diagnosed my FRIEND with Munchausen's by Proxy! My friend was divorced, her husband would NOT recognize the pediatric GI's diagnosis, refused to adhere to the gluten-free diet and reported her to Child Protective Services. At one point, they took this child away from her and gave full custody to her father. After much legal involvement -- and a LOT of money -- she was able to regain custody and her ex-husband then had to have supervised visitation because he endangered the health of the little girl. We may -- or may not -- have come a long way since those days.
  14. I was doing some research re: gluten-free hair-care products. I found an ingredient I didn't recognize, researched it, and found this in the Journal of Pharmacology and Experimental Therapeutics: http://jpet.aspetjournals.org/cgi/reprint/317/3/1320 I found this website that publishes products containing Methylisothiazolinone http://www.cosmeticsdatabase.com/browse.ph...ntaining=703935 It's worth looking into, I think. Given that I have neurologenic celiac as well as other neurological complications, I'm going to need to be a better consumer.