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still tiredofdoctors!

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About still tiredofdoctors!

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    Star Contributor

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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. Goodness . . .

    Yes, there IS a difference between gluten sensitivity and Celiac disease.

    I was gluten sensitive for many years -- diagnosed as "irritable bowel syndrome" and at one point, "ulcerative colitis". It wasn't until I encountered a tick that decided I looked somewhat like a delicacy and developed Lyme and three other tick-borne diseases that I subsequently began developing autoimmune diseases.

    I have a rather long list of them, but in the process of all of this, I sero-converted from "gluten sensitivity" to true Celiac Disease. My intestinal villi? Very healthy.

    I have Neurogenic Celiac. There is one protein on the Purkinje cell of the cerebellum that so strongly mimics gliadin that when your antigliadin antibodies are high - and you have sero-converted - it destroys those proteins. In the process, it also destroys your cerebellum's ability to maintain smooth transmission.

    It is also known as "Sprue-Related Ataxia" and "Neurological Celiac Disease" among others.

    Bottom line? I walk like a stumbling drunk. (Your cerebellum is what is affected most when you consume too much alcohol) I use a wheelchair for long outings, and I have a specially designed, weighted walker that I have just been able to get in order to try to walk without falling as much.

    The damage is permanent. No healing, no second chance.

    My son has developed two unusual autonomic manifestations recently. One is affecting his gut's inability to initiate peristalsis. Both are due to parasympathetic nervous system dysfunction -- routed through the cerebellum. He is 27 years old. He lives in Houston, TX. Because he disclosed my neurogenic celiac, he is having a full panel done. The MD understands that Celiac can manifest itself solely with neurological symptoms.

    My granddaughter is 14 months old and is very sensitive to many things. At this point, my daughter is keeping her on a gluten-restricted, but not gluten-free diet. She is actually doing more "challenges" to determine if gluten is one of the causes of the difficulty. If she finds that is the case, my daughter's family will live a gluten-free lifestyle and she will ensure that Sarah not consume gluten.

    If I knew then what I know now, the very minute that the neurologist said that I may have "Sprue-Related Ataxia", I would have gone on a strict gluten-free diet. Unfortunately, I waited almost eight months. The damage that was done to my cerebellum in that time, as I stated, is irreversible. You can see the changes chronologically when you look at my MRI studies. Then again, hindsight is 20/20.

    Enterolab or no, if your body has a negative reaction to gluten -- even with challenges -- it is trying to tell you something extremely important. I wish I had listened.

  2. I had really started getting concerned. His doctor here did all the "perfunctory" tests: thyroid, CMP . . those things. Wouldn't take into account the celiac component, though.

    Even though he's 27, when he called from Houston and was SO sick, I had that incredibly scared feeling. I was so worried and felt helpless. I can't drive -- can't even travel right now -- so I was just stuck here giving advice over the phone. Thank goodness we talk & text a few times a day. (I guess you don't realize how much you talk to your kids until they move away . . . ) Thank goodness, too, that while I was telling him what I thought he should do, he took notes!

    The relief I felt when this doctor IMMEDIATELY took that into consideration -- and incorporated it into his game plan -- was unbelievable. Celiac isn't the only test he is performing -- he is also doing antibody tests for thyroid, as well as a LOT more. He said from there he would then perform an endo and colonoscopy. He also talked about referring to other specialists should he not find anything.

    I have to wonder: IS THIS GUY AN ALIEN OR SOMETHING? :lol:

    P.S.: Beverly -- the professor I told you about who continually asked if I didn't want to be a writer vs. a PT? He was good friends with Hunter S. Thompson! I also love your other quote as well. I may have a LOT of diseases, but they define what's wrong with my body -- they don't define ME ;)

  3. My son, Brandon, is 27 and just moved to Houston, TX at the beginning of the month. He has been having some GI difficulty for the past few months, and a few days ago when I spoke with him it had gotten REALLY bad. I told him that he really needed to find a GI doc in Houston and have a work-up.

    He was able to schedule an appointment within two days of calling -- unbelievable -- and this guy didn't make him see a primary care doctor first, blah, blah, blah. But here is the even MORE unbelievable part and the incredibly GOOD part: When the doctor was taking his history, including his symptoms the doctor actually listened and acknowledged them. One of the more unusual symptoms is that my son has begun sweating profusely -- something entirely unlike him -- within the last few months.

    Brandon then told the doctor that "my mother has neurogenic celiac disease". The doctor said, "Oh -- then she has . . . " and started listing my symptoms! He then said, "Profuse sweating is autonomic -- I already know that I want to do a celiac panel on you. You could be developing neurogenic celiac as well. It is hereditary."

    HALLELUJAH! There is a physician in this world who LISTENS TO THE PATIENT, who INCORPORATES THAT INFORMATION into his thought process, and THEN DOES SOMETHING ABOUT IT!

    I am so pleased about this doctor that I just needed to share the news . . .

  4. My home health nurse is guessing that I had it. I was too sick to get out of bed to go to the doctor.

    I had only gone out once -- and was really not around a lot of people. Because our house has toxic mold, though, we're living with my mother. My nephews are here after school, and my granddaughter goes to day care 1/2 days three days a week, so we call this place "germapalooza".

    I am still using the Lysol wipes on all of the phones, light switches, door knobs, bathroom fixtures, kitchen appliances - anything that has the potential to be mutually used!

    I have a LOT of underlying health issues that predisposed me to getting it, though.

    My symptoms? I had some body aches, a pretty awful headache, sore throat and fever for about 3 1/2 - 4 days. I ran a fever and it must have gotten high enough to set off my epilepsy on the last day. Although the seizure was a grand mal, it wasn't nearly as severe as they have been in the past.

    The onset was fast. I felt fine at bedtime and woke up in the middle of the night feeling kind of horrible. It left JUST as quickly. I know for SURE that I have been much more sick in the past. This was hard on me, I think, because of the other things I'm fighting, but I just slept it off. I realize that I'm fortunate that I can do that. A lot of people can't.

    I took Mucinex for some sinus congestion, Advil for the headache and fever and Cepacol lozenges for the throat. Numb was good. I didn't take Tamiflu because by the time I realized that it was actually a flu it was too late. No point.

    I didn't get any secondary infections. Then again, I've been on Zithromax since December and I take two grams of Rocephin IV through a port twice daily.

    I didn't get the H1N1 vaccine, nor a flu shot. I was instructed by my physician that under no circumstances should I get either. I didn't ask why, but I am figuring it is because my body is fighting so much that it doesn't have the strength to produce antibodies to the vaccines anyway.

    I guess that's everything ;)

  5. My sister and I are a lot older than you and your brother . . . ( a little "caveat" there!) and quite frankly, it seems that younger siblings must not change much.

    She was cutting an Angel Food cake (not gluten-free) very close to the strawberries we were all going to share. I had gluten-free poundcake. I asked her if she could please stop for a moment to let me move the berries to a more safe location. She started mimicking me and mocking me - trying to start a fight - and was relentless.

    Because gluten has only affected the cerebellum of my brain, I whacked her at the base of her skull with the palm of my hand. She said what was that for? I said, "Tell you what . . . let me do that until you walk the same way I do and you know it's permanent. Then I want you to let me know if you want me to continue doing that. Each time I ingest gluten essentially that is what happens to my brain. Want me to keep going?" I haven't heard anything about my celiac since.

  6. Edit:

    The info on the elavil to help get REM sleep is interesting. I have been trying to get my husband to go for a sleep study test. April 2008 he had sinus surgery for blocked sinuses and is doing well from it. He snored so bad before surgery and we thought it would improve after. It has not and I actually have heard what seems to be gasping noises while he sleeps. After these episodes he stirs in his sleep and does not appear to be resting well. He is always tired and fatigued. The elavil has not helped that but then again it would not help sleep apnea. He has gained about 30 lbs in the last 1.5 yrs so I'm not sure that's helping either. Since being on the elavil he says he has the munchies all the time. :rolleyes:

    Oh My Gosh!! Get him to a sleep study!!!!! I would almost GUARANTEE you that he has apnea!! If he does, there is no way he is getting into a "repairing" sleep mode.

    Unfortunately, I think that Elavil DOES increase your appetite. My patients complained of that, as well!

    Also -- and this is going to be the one that he won't like -- he desperately needs to get aerobic activity AT LEAST three times per week . . . four to six would be better.

    Of course the "rub" (SHEESH -- no pun intended) is that trying to find activity that doesn't irritate the scrotal area is going to be difficult. DEFINITELY swimming would help. If, though, there is any kind of torsion with the sacrum that is causing increased sensitivity at the S2 nerve root, it will make the pain worse - not better. The key to ensuring that perineal pain is so multi-fold . . .

    • Ensure that there is no obvious lesion causing the pain
    • Ensure that there are no adhesions that are limiting the mobility of the tissues in the area
    • Do a FULL-BODY evaluation in order to look for underlying causes of possible increased nerve irritation
    • After checking for strength and flexibility inconsistencies, perform a full gait evaluation -- look for anything that can give you a clue as to any additional musculoskeletal dysfunction OR if something with regard to the GAIT ITSELF is causing more problems

    I am a real stickler for those types of things. I was fortunate enough to have two mentors who were phenomenal. They taught me SO MUCH about the subtleties that can cause an enormous amount of trouble.

    If you want to PM me, I have some additional suggestions - but they are probably not for public viewing!!

    I wish you the BEST of luck. This has to be such a struggle for you, as well.

  7. I can't remember when I wasn't sick when I was in school. I had allergies like you can't imagine, and I was obviously gluten-sensitive -- just not celiac yet. I can remember one year that I missed two months of school because I had diarrhea so badly that I literally could not go anywhere.

    The bullying and abuse I took? Outrageous. To this day, I can tell you the names of the persons who were so abusive . . .

    Oddly, I would not want the lives those people have today. One individual ended up committing suicide. Perhaps they felt so badly about themselves that they needed someone who they thought was "one peg down" in order to make them feel "one peg up".

    I think those experiences -- even though they were pretty awful -- were part of the "big picture" developing who I am. I didn't go to college until I was 31 -- I thought I was too stupid . . . but when I DID, I graduated Magna Cum Laude . . . and I realized they were wrong! In an odd way, it made me much more compassionate, I think. It also helped me to stop one of my teenaged patients from committing suicide because SHE was being bullied. I found that out AFTER her mother told me. I had no idea she had plans . . . I just talked with her. I'm a PHYSICAL therapist -- not a mental health professional. That was a very defining moment in the realization that the bullying may have eventually HELPED me. GO FIGURE.

    I also think that it helped me raise children (now adults) who are more open, more accepting of individuals' differences and less judgmental. It was important to me that I instilled those qualities in them.

    I am so sorry that you are having to undergo this. Having been there, I know it is AWFUL. At this point, I know it does not make sense that I would say this, but someday, you may see it as a life-changing blessing. In the meantime, please know that these individuals do not KNOW you -- they don't know you well enough to know your strengths, your talents, your uniqueness . . . and while they THINK they know your weaknesses -- well, they are more than likely without a doubt, very wrong about those.

    You have an important place in life's overall scheme. You have talents and gifts that you will share and share and share. You are infinitely important in touching people's lives that you may never know you have touched -- so much for the better. The world is a better place because you are here. You are SUPPOSED to be here.

    Please keep only those thoughts with you when the bullying starts. Or, when you start to remember what was said . . . and always remember: they are WRONG.

    P.S.: I endured the subtle "bullying" from my professors just like nomentanus. While that is VERY hard to endure, just remember that you WILL prove them wrong . . .

  8. While I know there are stringent rules for washing down the equipment, I still question whether flour dust is "looming" in facilities that process wheat products!

    I'm somewhat paranoid about gluten, though - my only reaction is degeneration of the cerebellum - and it takes about 9 months before the next MRI shows how much - so I avoid any possible gluten ingestion like the plague!

    I remember a long time ago someone whose husband was a Celiac but was a manager at Chick-Fil-A. While he didn't EAT any gluten, he ingested it through the flour dust that was in the air . . . that always stuck with me. That's why, when I read that statement, I think about him -- and the flour dust!!

  9. KPanther --

    Thank you for a GREAT list! That is fantastic.

    I don't know about soy-free, but my kids' friend (my kids are grown . . . ) started selling Arbonne. She got a list of gluten-free products for me -- I'd be happy to share it -- and I can give you her email address, if you'd like it.

    With regard to Estee Lauder? YIKES. They own an INCREDIBLE amount of cosmetic companies: MAC, Clinique, Philsophy, Origins (I think), Jane (available in drug stores, etc.) . . . I'll have to think about the others. When I called them years ago, they were incredibly rude, as well. Also -- evidently Neutrogena hasn't changed their customer service attitude! When I called them years ago, I was told -- in a VERY snippy voice, "You need to ASSUME that all of our products contain gluten." Assume? Let me tell you how tempting that one was . . .

    Thanks again for a great list.

    Darlin Deb: I agree. My dermatologist INSISTED that gluten on my skin could NOT cause a reaction. Perhaps he would like to explain why any time I use something with gluten I get these really AWFUL lesions on whatever area I used it . . . He rolled his eyes -- and I asked him to tell me why I was bleeding at all these spots . . . he never did give me an answer. Thanks for your input, too! Where do you get the Lady Bug Blessings peppermint lotion?

    Oh -- also, I found this out: while Bare Essentials is gluten-free, RARE Essentials -- the one you can wear at night -- ISN'T!! Also, I think it is "L'Orac" (?) I don't know - it was outrageously expensive at Sephora - is NOT gluten-free!

    I have found that our local Sephora is fantastic about checking on gluten-free status for me. THEY actually call the company rep while I'm there . . . and will either say, "It is DEFINITELY gluten-free" or they have even said, "I didn't like the answer I got . . . sounded questionable -- don't buy it!" It's been a really good experience shopping there.

  10. Now I am going to sound like a stereotypical physical therapist!

    I treated Pelvic Pain prior to having to "retire" and close my clinic due to illness . . .

    I agree that your husband needs to have additional testing to find out if anything additional is "brewing" in his testicular and/or perineal area. Perhaps an MRI? I actually treated a patient who had a perineal abscess that had been undiagnosed for QUITE some time. He ended up having to have surgery to remove a significant amount of infection and necrotic (dead) tissue around and behind his testicle, and the wound needed to be left open to heal "from the inside out".

    Because the perineal area is greatly composed of muscle tissue, it is not out of the realm of possibility that he sustained muscle injury, as well. A physical therapist who specializes in Women's Health should also be able to treat perineal pain in men, as well.

    Reflex Sympathetic Dystrophy can be a definite cause for concern. Studies have shown that, if it starts moving from the affected (usually limb) area UPWARD toward the brain, it can actually ascend to the thalamus portion of the brain. This can cause a condition known as "thalamic syndrome" where the pain actually crosses over to the other side of the body and becomes intractable throughout the entire body. Quite often it is "poo-poo'ed" by the medical community as a "catch-all" diagnosis, but when I suspected it, I did not take it lightly. Neither did the neurologists who referred their patients to me.

    The treatment that I found was most successful was a combination of manual therapy to reduce any muscle dysfunction in the area, "desensitization" techniques that start with using something as light as a cotton ball on the area for approximately five minutes three times per day, then increasing the textures as each becomes tolerated (again, a skilled PT can fully instruct you on this after evaluation), and High Voltage Pulsed Galvanic Electrical Stimulation. A physician (typically a neurologist) who fully understands RSD is essential if your husband does have this. Most that I worked with prescribed Neurontin (Gabapentin) to help diminish the nerve inflammation and Elavil - an antidepressant that allows the patient to get REM sleep.

    REM sleep is incredibly important with an injury such as your husband has sustained. A significant number of neurotransmitters are emitted during that time, along with Growth Hormone. While the latter is secreted in childhood and adolescence in order to physically GROW, as adults it is secreted in order to REPAIR minor injuries that are sustained daily. It also helps to repair major injuries, as well.

    I am so sorry that you are having to go through this right now. I cannot imagine the stress this is causing you. I hope you are able to get some answers that help alleviate the problem -- and soon.

    Sending you many, many, ((((((((((((((((((((((hugs))))))))))))))))))))))),


  11. I agree with Ravenwood Glass. I posted this earlier, but I think it warrants an additional post:














    These are just journal articles that cite the manifestation of neurological symptoms regarding Celiac. Some are ONLY neurological manifestations. That is the type of Celiac I have (cerebellar, occulomotor & word retrieval).

    Additionally, her comment about inflammation, in general, is quite appropriate. It isn't a far stretch that systemic inflammation can be caused by the gut.

    My one child's asthma presented with the typical "hack"-type of coughing daily. When his asthma was very severe, I would notice the rib dysfunction and "belly breathing" that is typical. My daughter, on the other hand, presented with severe fatigue. What we found was that her breathing while sleeping was so diminished that her oxygen saturation levels were decreasing to the point that it would signal her body to wake up in order to take a deep breath! This occurred so frequently! Oddly, though, it was not diagnosed as "apnea" because it was truly an asthmatic problem.

    I hope this helps some. I hope you have success with getting to the bottom of this. It's frustrating when it happens to you -- it's frustrating and scary when it's your child.



  12. I'm not sure about the regulations. I apologize for that. I do know, however, that one particular Mom in our city has an autistic child for whom she makes only gluten-free/CF items. From that, she started her own business selling through a locally owned "chain" (three stores!) of health-food stores.

    I do know that in order to do this, she had to have a separate, dedicated gluten-free/CF kitchen certified by our Board of Health. I do know that you have to have a specialized sink with increased water temperature in the water heater, a particular method of washing dishes, etc. as well as a specific storage method in order to be certified by our board of health.

    Most of the foods sold at our Farmers' Markets are fresh fruits, vegetables, herbs and plants.

    I'm sorry I couldn't be of more help . . .


  13. The thing is, there are numerous brands of Stevia on the market. With the exception of the plant itself, one cannot simply lump all brands together and make blanket claims. Some have sugar-alcohols or dextrose (often from corn), some have inulin, some have honey powder, some have grapefruit seed extract. The list goes on and on.

    In addition, not all Stevia extracts are of the same purity. I mean, as it is extracted from the Stevia leaf, before it is blended with other ingredients. The lower the purity (meaning more impurities), the more likely the chance of aftertaste. And if you have a ragweed allergy, those impurities may contribute to such an allergic reaction.

    But as for the relation to ragweed, that's true. But so is lettuce, sunflower, chicory, marigold, Feverfew, African daisy, calendula, chamomile, yarrow, chrysanthemum, sage, thistle, burdock, dandelion, and various others. So, if most of these cause you no problems, then I think the purified Stevia extract shouldn't either. Since inulin is often extracted from chicory, one may have a reaction to Stevia products which contain inulin, if there's a sensitivity to chicory. It doesn't have to be due to the Stevia extract itself.

    In recent years, several companies have improved their extraction process, yielding a more pure product. What they ultimately blend it with is another matter. Most Stevia products are blended with something so that they measure more like sugar. Otherwise, those new to using it have a tendency to use too much, and be greatly dissatisfied. Too much can cause an off taste. I only buy the pure powder, which has nothing else in it whatsoever. It is over 95% pure, and comes from Brazil, unlike most brands which come from China. It is extremely sweet, so you need to familiarize yourself with it to use it properly.

    There are a few different components of Stevia which have a sweet taste. Not all companies focus on the same components, so they don't all taste the same, even in their pure extract form.

    What an EXCELLENT point! Where are you able to get the pure stevia powder? Have you found it readily available in health food stores? We have two independently owned stores, and they would be able to order it . . . I will also tell my nurse (I talked with her today) so that she can use it, as well. Thank you for a great idea . . .

  14. It was a long time ago that I started gluten-free lifestyle, but from what I remember, I didn't have the reaction you are having. Is there anything containing gluten that you were eating frequently? (I'm thinking caffeine withdrawal from chocolate or something like that, maybe?) That's not to say that you couldn't have that reaction to refraining from gluten. I think everyone's body reacts in a different way.

    Good luck to you -- learning to live gluten-free can sometimes be a somewhat large learning curve -- but I think it's getting easier. When in doubt -- use the 800 number listed on packaging to hound the companies!!

  15. Honest to goodness, I don't KNOW how he knew by my walking! I forgot to ask him! I was to the point of using the walker - not in the wheelchair yet - and while, yes, I definitely had a typical "widened" cerebellar gait, I did have some unusual characteristics to it. My doctor and I once joked that it was a cross between "Herman Munster" and a "Royal Lippizon Stallion"! Maybe that was it . . .

    I was finally diagnosed when I saw Mtndog's doctor in NYC in December. He said just recently that had I not seen him when I did, I probably would not have seen this last birthday in March. I was having seizures 3-5 times per day, each lasting 20 minutes. He said eventually my heart would have stopped during one of them. Scary stuff, huh?

    Because I seroconverted to the neurogenic Celiac (because of the Lyme), I'll always have to be gluten-free. There's no getting around that. He has discussed that with me, also. We have toxic mold in our house and are living with my mother until we can get SOMETHING figured out with regard to the house (it has to be burned to the ground), but the mycotoxicosis I developed (again because the Lyme took away my ability to fight it) is what caused the white spots on the gray matter of my brain.

  16. I was kind of shocked at how easy an electric rice steamer is! I didn't know how convenient, either, until we got one. It takes about twenty minutes -- the time it takes me (or less) to prepare the stuff going ON it!

    I still put the sauce & cheese in the enchiladas, along with anything else I'm deciding upon . . . but I DO withhold putting the sauce & cheese on the top. I usually defrost in the microwave, then put the sauce & cheese on top & bake with foil covering the top -- then the last few minutes remove. I am getting REALLY hungry . . . !!

    BTW: It's my experience that Patti has GREAT recipes!

  17. I thought they were supposed to be gluten-free, too. My reaction to gluten is so delayed (neurogenic vs. gut) that I'm not someone to run immediate reaction by. I'll ask my home health nurse. Her celiac is severe and her sensitivity is almost hair-trigger. She is constantly reading about gluten-free status of foods, and is a really valuable resource. She is coming on Monday. I'll get back with you then.

  18. I'll withhold personal comments about accuracy . . . I'm already in trouble!

    My home health nurse is my "acid test" with regard to gluten-free safety. Her celiac is very severe, and her sensitivity to the slightest amount of gluten is very high. She has not been able to use stevia.

    While it does have carbohydrates and "sugars", I use Agave nectar. You need to use very little, and it also has a low glycemic index. I'll have to check the brand, but after calling the manufacturer, I found out that it is gluten-free. Also, my home health nurse had no reaction . . .