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still tiredofdoctors!

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About still tiredofdoctors!

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    Star Contributor

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  • Gender
    Female
  • Interests
    gluten-free Cooking (!), Sewing, Gardening, Scrapbooking, Research -- I guess I'm one of those "life-long learners"!!
  • Location
    Southern Indiana

  1. Susie,

    IgeneX caught all four of my tick diseases: Lyme, Babesia, Bartonella and Erlichia.

    Oddly, my veterinarian told the MD's YEARS ago that I needed to have the type of testing that they do -- he mentioned specifically the Erlichia because of the way I was walking.

    Please tell your friend that it is important to use a laboratory such as IgeneX because of the dual-testing protocol they have. In the very beginning, I was (reluctantly) given a generic "is there any Lyme in the blood" test which returned a false negative -- which will up until two years after initial disease contraction.

    You know my history . . . which so STRONGLY mimicked MS. Best of luck to your friend.

    Lynnie


  2. Congratulations, Deb.

    You are such a blessing not only to your husband, but to all who you encounter. Your determination to help him - and the others on here you have helped SO much (including me) is inspiring.

    I am so happy for you both. Have a GREAT anniversary celebration. You deserve it. :D

    ((((((((((((((((((((((((((((((((Many, MANY hugs))))))))))))))))))))))))))))))))))),

    Lynne


  3. "Just for the record, I do not take issue with anyone disagreeing with me or with a correction of my information. I DO take issue with the tone and the nastiness directed at me by PM. I will forward those to the administrator I suppose, but there's really no need."

    It is necessary to correct one highly inaccurate statement in this thread, however: antibodies created by ingesting gluten -- specifically antigliadin antibodies - circulate through the blood and are actually able to break the blood / brain barrier, causing significant cerebellar damage. There is one particular type of celiac disease -- labeled "Sprue-Related Celiac" , "Neurogenic Celiac" , "Gluten Ataxia" , "Neurological Celiac" depending upon the researcher -- that has as its sole presentation cerebellar degeneration. As someone who has this particular type of celiac disease, I have kept current with any and all published VALID research available.

    If you would like to see these, I will provide them.

    Best of luck to you as you pursue this. It was hard enough in the beginning wading through the enormous amount of information and/or misinformation available. I was fortunate that, at that time, there were folks on here who were enormously helpful, nurturing and more than willing to help. Some are still here, but as I have watched, I see very few left. The helplessness I felt when I was regarding my own health was often stifling. I cannot imagine what you are feeling when you are trying to make choices regarding your child.


  4. I have been a member of the forum for five years, but had to "re-name" myself in order to be able to log in! Some bizarre computer glitch . . . .

    In that time, I have had encounters with the absolute WORST excuses for physicians you could possibly imagine. I was misdiagnosed with five different illnesses that almost cost me my life during that time. Which leads me to . . .

    If leading a gluten-free lifestyle (not just "not eating gluten" - there's a big difference!) helps you, makes you feel better, and alleviates your symptoms, I think it's not worth the time, effort or money to have someone say, "Oh, yes, you have Celiac" or "This is in your head, you are not Celiac".

    Celiac disease is an autoimmune disease - like Rheumatoid Arthritis. It has been proven that Gluten Intolerance is more than likely the precursor to the autoimmune "shift". Whether you actually have the ANTIBODIES - meaning that you have seroconverted to the autoimmune disease, or you are INTOLERANT -- that doesn't matter.

    You know your body much better than any physician ever will. If living a gluten-free lifestyle vastly improves your quality of life, stick with it!


  5. Hmmmm . . . . kind of take issue with "you will never have a normal sed rate." When your body is in homeostasis, even with Celiac, you should NOT have an elevated sedimentation rate.

    I have run the GAMUT with physicians for quite some time. My philosophy is this: Some are great, some good, some fair and some -- well, they're just idiots. Also, some are simply lazy and do not want to invest the time it takes to research a particular difficulty you are having. While going to a new MD is a real PAIN, unless your MD really takes care of you, CUT BAIT!! I'm somewhat "jaded", so you might have to take this portion of advice with a grain of salt!

    I agree with Ravenwoodglass . . . sublingual B12, combined with Folate, can definitely help with symptoms that sound similar to peripheral neuropathy. You CAN have it only in your upper extremities. I had previously given myself Cyanocobalamin (B12) injections 1 mg/ml and 1cc intramuscularly three times per week because of a genetic mitochondrial defect. The physician I see now has had me have methocobalamin -- another form of B12 that, according to the compounding pharmacist -- compounded at 25 mg/ml and I inject 1cc 4 times per week. Combining that with folate, I have been able to dramatically reduce the amount of Neurontin I have had to take for peripheral neuropathy.

    I take the extreme amounts of B12 that I do because I do not utilize it efficiently. My levels were mid-range, and my neurologist (that I had at the time . . . . ) was satisfied that it was okay. The geneticist was not, and the two of them went rounds with regard to the issue.

    My most recent MD (long story) who has given me the methocobalamin absolutely believes that any additional B12 that I receive will of course be excreted, but it is not a risk to either the liver or the kidneys (my former neurologist had me convinced that my kidneys were going to blow if I took B12).

    Even with the sublinguals - which I know are much less than what I was taking - I still think it is a very VALID treatment to try!


  6. I think cake & cookie mixes, Thai Kitchen boxed noodle meals, Lundberg chips (I don't know if you live close - if so, add some hummus and/or fresh salsa), gluten-free broth, Biscotti's, PEANUT BUTTER PANDA PUFFS (!), again if you live close - Van's frozen waffles, Kinnick Kinnick (one "n" or two??!!) doughnuts -- OMG -- Vanilla and Cinnamon Sugar are delicious!, Chebe pizza crust mixes or frozen pizza crusts & "bread sticks", Glutino bread sticks . . . they're baby bread sticks - crunchy - with gluten-free pizza sauce, hmmmm . . . . have to think of some more . . . .

    I think you are a really good SIL! What a kind, caring thing to do.

    {{{hugs}}},

    Lynne


  7. oooooohhhhhh -- BAD article!

    I don't discount natural medicine, either -- in fact, in addition to a massive complex of antibiotics for Lyme & other tick-borne diseases, I am taking a rather full "cocktail" of natural supplements, as well.

    These folks, however, seem to have discounted the fact that Celiac Disease is just that -- a DISEASE -- and namely an autoimmune disease. I have yet to read any valid scientific studies that indicate that once you have sero-converted to "Celiac" from "sensitive", there is any realistic chance of "desensitization". Actually, I haven't read any convincing studies to indicate that even gluten sensitive individuals have much chance of desensitization.

    Hopefully, people who are drawn to their advertisement will invest in thorough research and decide against that option.


  8. I'm with Peter on this one . . .

    I'm not a doctor, either. It does appear that your titres indicate celiac.

    The antigliadin antibodies alone are high enough to cause Neurogenic Celiac Disease (the latest term for "Gluten Ataxia", "Sprue-Related Ataxia" and/or "Neurological Celiac.

    I had only the antigliadin antibodies, and the only manifestation with regard to Celiac damage that I have incurred is in my cerebellum.


  9. Can you go to an emergency room?

    Oops -- quoted before I read the entire thread . . .

    It is true - particularly if it is a state or teaching hospital - but I think even private hospitals post that they will NOT turn you away because of lack of ability to pay. You could be seen in the emergency room, receive some what sounds like like MUCH needed blood testing as poorly as you are feeling, treatment and in many cases they can "hook you up" with the drug representatives (at the hospitals, at least here, they rarely keep samples on-site) who have free programs.

    Call the best hospital you have in your area (better to be treated at the best than the worst, if they all have the same policy), ask them if they will turn anyone down because of their lack of insurance or lack of ability to pay (they would potentially lose LOTS of gov't $$$ if they said "yes"), and then see if someone can take you into their ER.

    I think it is DEFINITELY worth a shot.


  10. I'm late in the topic, also.

    I guess my all-time favorite read is one of those touchy-feely books: All I Really Need to Know I Learned in Kindergarten.

    I'm currently reading The Four Agreements

    I found a fantastic book (and now can't find it because I unpacked and don't know where I put it when I came home!) with regard to Celiac Nutrition vs. just recipes, just information . . .


  11. It's a journey, not a sudden arrival. Don't beat yourself up, you'll get there.

    More true words were never written . . .

    Living a gluten-free lifestyle is a really large learning curve. Nikki is right, also. Ingredients are constantly changing, even within the medications that are supposed to help us. Staying on top of that is no small task. There is no magic wand that someone can wave that lets you have all the answers right at your fingertips.

    I think the biggest issue here is STOP BEATING YOURSELF UP!!

    If you were a horrible parent, you wouldn't give a rat's arse as to whether your daughter consumes gluten. The fact that you are learning, researching and doing whatever possible to help your daughter with this illness more than confirms that you are a very caring, loving mother. How LUCKY your daughter is to have a mother so concerned with her health and best interest.

    {{{{{hugs}}}}}

    Lynne


  12. "For many women, the desire is no where near their male partners. This is "normal" and "natural" from what I have studied"

    I guess my question is to what extent have you studied Human Sexuality? I have a dual major with the second being Psychology with emphasis on Human Sexuality. My studies indicated that the majority of men reach their sexual peak at around age 18. At this time, their sexual interest is by far greater than their female counterpart's.

    Women, on the other hand, typically reach their sexual peak at around age 30-32. This age difference appears to be very unbalanced with regard to peak sexuality. It does lend toward a significant desire balance as a man's sexual peak begans to decline, and a woman's begins to increase. This, barring external influences and relationship stressors, lends toward achieving the "happy medium" of which we have been speaking.

    Additionally, many women, as they complete menopause or undergo hysterectomy have yet another rise in sexual interest due to decreasing concerns with regard to possible pregnancy. This phenomenon can also occur aftter a male spouse undergoes a vasectomy and has been given the "all clear" with regard to sperm count.

    I agree with ShayFL's advice with regard to sex therapy. There are many excellent family therapists who specialize in sex therapy. Many work closely with physicians (historically endocrinologists) to determine whether either spouse has specific abnormalities with regard to hormone levels. Should issues with regard to sexual desire "incompatibility" (not SEXUAL incompatibility, but DESIRE incompatibility -- big difference) continue to the extent that either partner considers this to be a problem, licensed family counselors specializing in sex therapy are of immense help.


  13. In your experience, can DH occur from TOPICAL application of gluten?

    My dermatologist told me "Absolutely not." He also said that what I describe is not indicative of DH and that it only develops after ingesting gluten. I have been gluten-free for over three years now - and I am extremely compliant and am scrupulous about watching for cross-contamination.

    I had my hair cut - only cut - but she decided to put a "conditioning treatment" on my hair. She gave me a scalp massage, then massaged all around my hairline, at my temples and around my face to the bottom of my ears. It felt fantastic at the time!

    I had my hair cut at noon,and had to wait for my husband to leave work to pick me up. I have neurological celiac, and because of that am in a wheelchair for any distances and cannot drive. As I was wheeling around the mall, I noticed that my scalp and hairline began to really burn. It continued to get worse as time passed.

    I went into Sephora - my new favorite store(!) - and was checking out their new things. I decided that I would "touch up" my powder while I was there. When I pulled my hair back to apply, the entire area was crimson red. I noticed small bumps beginning to form that looked almost like blisters. I asked two of the girls that work there that I am familiar with if they thought my face was read in that area. At the same time, both of them said, "You're starting to get blister-like bumps there." The one girl went to get something to calm the area down, but knows that I can't use products with gluten . . . and said she called the manufacturer and it DID contain gluten, so she knew I shouldn't use it. I had told her about my concern with accidentally ingesting gluten through products, so I made sure all were gluten-free.

    I went back to the salon, they looked at my scalp as well, and said that it, too, looked to be developing what looked like blisters. They read the ingredients on the bottle of conditioner, and it listed "hydrolyzed wheat protein". It also said - and this surpsied me - "Contains Gluten". This was told to me by two of the women who work at the salon.

    As soon as I got home, I washed my hair and face (VERY gently) with gluten-free shampoo and face wash. By the next morning, I had what looked like small full-blown blisters throughout my scalp and hairline. I called my dermatologist's office, and the response through his assistant was, "It does NOT sound like DH, it sounds like a plain old contact dermatitis." They told me to use over-the-counter cortisone cream for a few days.

    YIKES. It made it HORRIBLE. I ended up with small "oozing-like" blisters throughout the whole tarea I descrbed. It reminded me of when my daughter had the chicken pox and she had them in her scalp. Eventually they kind of "crusted over", then became scabs that eventually fell off.

    Question #1: Is this what DH looks like and/or starts like?

    Question #2: Can you develop DH from topical contact and NOT ingesting gluten?

    Any help you can give me would be great. Thank you.


  14. Given that tonight I had a "celiac moment" with the neurological stuff, no one would even howl at the moon with me. So, no "antics" to report . . . :angry:

    First: Normal is just a setting on the washing machine.

    Next: I think that all relationships have an "ebb and flow" with regard to frequency. I think a lot of external factors apply in addition to the what is happening within the relationship.

    BET YOU GUYS THOUGHT I WAS GOING TO REALLY GO TO TOWN WITH THIS ONE!!

    That's Karen's job. I have just one word: Altoids. 'Nuff said. :rolleyes:


  15. JWSoFla - welcome to the board. Even though my "history" shows very few posts, I am an "old-timer"! Just couldn't get my password . . . That being said

    Given that Celiac disease is an autoimmune disease, it is not uncommon having concommitant autoimmune diseases. Hashimoto's Thyroiditis is very common with Celiacs.

    I was treated for years for a "multinodular nontoxic goiter" . . . I had to change endocrinologists due to insurance constraints. Even though the the right lobe was 2 1/2 x the normal size and the left was 3, the physician to whom I was referred did not believe in using Synthroid to control the condition. He discontinued the medication and I remained off it for ten months. I ended up hospitalized and in extremely poor condition.

    I returned to my prior endocrinologist at the urging of the hospitalist treating me at the time. She then tested me and it was determined that I did, in fact, have Hashimoto's. Because of this, despite Vitamin D3 treament, my thyroid continued to grow at a rapid rate. It actually grew inward, with the left lobe wrapping around my trachea and extending in the front down under my breastbone.

    At one point, my endocrinologist asked, "How would you feel about having your thyroid removed?" Given that I had seen her previously for years and this had never come up, I said, "Well, we really haven't talked about it before." She said she just didn't like how it felt . . .

    The otolaryngologist I saw didn't agree with her suggestion and wanted me to wait three months. Within that time frame, I had a follow-up appointment with the endocrinologist. She was trying out an ultrasound machine she was considering buying, and asked if I would allow her to use me as a "guinea pig" and obtain images. I readily agreed.

    She found that the cysts had become hemorraghic - a precursor to thyroid cancer. The biopsy after rapid removal of my thyroid indicated that it was consistent with long-term Hashimoto's and was indeed pre-cancerous.

    The reason for this very long post is to confirm your suspicion that gluten-sensitivity and/or Celiac can very much be concommitant with Hashimoto's. It is important to continue monitoring your TSH, T3 and T4 levels, along with Thyroid antibody levels in addition to monitoring your D3 level.

    It may be well worth your time and money to have at minimum your antigliadin antibody level checked. If you have insurance coverage that will underwrite the costs, you may then want to ask that your antitransglutaminase and antiendomysial antibody levels be checked as well.

    I wish you the very best during this endeavor - the advice I could best give you is that maintaining consistent documentation and having tenacity will be your strongest mechanisms with regard to managing your conditions.


  16. I was surprised at how quickly I was granted disability benefits. I have "neurological celiac" and because of it, have significant cerebellar damage.

    I insisted when talking with my neurologist that I was going to overcome this, despite his suggestion on my second visit (!) that I apply - I was forced to close my Physical Therapy practice due to my limitations. After two years of his questioning at each visit, I finally "buckled" and applied.

    I phoned my locial Social Security office in late January of 2007 in order to ask a question and they simply performed a phone interview with me, asking me the application questions. I was fortunate in that I spoke with a very kind woman who, when I described my medical signs and personal symptoms, said that she felt I underestimated my degree of limitation. She re-visited that section with me, asking me unbelievably detailed questions. I was informed by phone in February that they wanted me to undergo a medical evaluation by a Social Security physician and it was scheduled for mid-March. Evidently, there that is very normal, and a LOT of people undergo these. The waiting room was somewhat crowded!

    You can imagine my surprise when, in early June, I received a check from Social Security. Two days later, I received a letter stating that I had been allowed benefits and would be receiving my first check "within two weeks".

    My best advice would be to keep a binder with all pertinent information regarding your disease inside:

    Collect detailed documentation with regard to how this disease has affected your ability to work; speficially, the number of days missed due to illness within the past two years (possibly four).

    Document - in very specific terms - the symptoms which limit your ability to concistently perform your job tasks or hinder your ability to maintain a "normal" workday with regard to number of hours, amount of time you are able to perform your job tasks without interruption, and the approximate amount of time you would not be able to perform your job tasks within the course of a 40-hour work-week.

    Keep copies of all medical records from each physician seen. Keep a separate section for laboratory and/or diagnostic procedures.

    When you have diagnostic procedures performed, ask for a copy of the films. If the hospital or clinic performing the test will not give you copies, check them out "for a physician's visit". The performing entity will tell you that the films are their property, and legally this is true. Most now use computerized archiving, and will easily give you either copies or a celiac disease. Because of lack of storage space, many hospitals in our area are destroying films over a certain number of years: typically, three. (I have even had difficulty accessing previous mammogram films now - one of the types of films in which physicians INSIST they need for comparative assessment.) Once you check them out, do not return them. I have yet to have an indepenent clinic (we have "Open MRI" clinics here that market to physicians like CRAZY) or hospital contact me asking that I return their films.

    These are the things that I think worked for me. I also saw this work for my patients, as well. By and large, the ones who did NOT do this had difficulty (as many as four or more rejections) receiving benefits.

    I hope this helps.


  17. While my log-in name is new, I am actually an old-timer! I simply can't log in under my previous name . . . despite numerous tries - just wanted to let you know I'm not new and "butting in".

    With regard to the bone growth, my son was diagnosed with a bone growth delay of 3 years, 5 months when he was in the 5th grade (he's 26 now). I asked the endocrinologist we saw exactly what that meant - I am 6'1" and he was by far the smallest child in his grade.

    His answer was that he had "short stature syndrome" . . . then he said, "Delayed growth. He's a a late bloomer. It means that he is going to be one of those kids that goes away to college, comes back and everyone says 'WHO IS THAT??' " My son's response? "Fat lot of good that does me NOW. And how would you like to be the smallest kid in your class and show up with HER as your mom?" I started laughing and said, "I must be a monstrosity." Brandon said, "No, but YOU'RE really tall. I'M not."

    The endocrinologist said that we could try testosterone shots to induce growing (he was not lacking in growth hormone), and because Brandon had migraines, they wreaked havoc with them - it was awful. The shots were short-lived.

    Today, he is a very healthy 6'1 (his father is 5'9"). He just woke up from a nap on the couch and about the delayed bone growth issue said, "Don't do anything . . . "

    With regard to the constipation, is it that he has stools that are always too firm / hard, or is that the stool is of "normal" consistency and he has difficulty HAVING a bowel movement? The reason I ask is that, when I was practicing as a PT, I treated a large pediatric population. What I found in 99.2% of patients referred starting at age 8 months and on (I did a chart review study to verify my statistics), was that they had some type of sacroiliac dysfunction - namely with a sacral torsion - at a level that gave too much stress on the nerve root that innervates the external rectal sphincter. It was in constant spasm. These kids would continually try to find a "position" in which they could have a bowel movement. Toddlers would be trying to contort their bodies - and want to stay in diapers for that reason - so that they could find a position that would allow the sphincter to relax so that they could have a BM . . . without screaming in pain. A orthopediatric therapist - or even a women's health therapist - who does manual therapy may be able to help if that's the case. Also, an osteopathic doctor may be able to help as well.

    If this is the case, feel free to email me and we can discuss it further, if you'd like.

    Good luck with this. As a parent, I know how disconcerting it can be when your child is having health problems. The worry sometimes can be so awful . . .

    Lynne