tiredofdoctors

Sophiekins -- WOW -- that is great information. I had no idea that there is actually an NMD. I knew that naturopaths weren't MD's, but had no idea that an MD could actually become a naturopathic doctor. I was skeptical about the woman that I saw, but she was given good references by some friends and acquaintances. Boy, they must have had better outcomes than I did! I think you're very lucky that you're in an area that actually has an NMD. Thanks for the heads up about this . . . xxxooo Lynne

Welcome to the forum, Aussiegirl!! Unfortunately, I think you are going to get a LOT of responses from people who have had this much difficulty. Physicians haven't been informed properly of the subtle and not-so-subtle symptoms of celiac. Hopefully, since it is becoming more in the forefront with regard to publicity, they will begin to educate themselves.

Good luck to you . . . . and stay gluten-free!!

Hugs,

Lynne

Welcome to the board! I have neurological celiac -- and what you are describing are exactly the symptoms I had for a LONG time -- and was told by several that I was a head case!! I did, however, have elevated anti-gliadin antibodies. The first test showed them as high, the second as "outrageously high" according to my neurologist. The other two tests and the small intestine biopsy were negative. Since all of the information has finally been "proven" and accepted, antigliadin antibodies are now understood to cause extreme cerebellar damage.

I would ask my MD to perform another antigliadin antibody test. That is the test that determines if you are gluten intolerant. My guess is that yours is going to be elevated.

Please keep us updated.

Hugs to you,

Lynne

According to my doctors, yes, it is more pronounced in Celiacs. I have seborrhic dermatitis (fancy words for seborrhea) . . . it's between eczema and psoriasis . . . . so I guess I'm on the side of the fence that's proving them right!

Rusla, I am so SORRY that you're that sick. You poor baby. All that because of chocolates that were supposed to be gluten-free.

I hope you're feeling much better VERY soon. Please take care of you. I need to e-mail you, as well . . . have some interesting news to tell you!! There -- that will keep you guessing for awhile!

Talk to you soon,

Love & Hugs to you,

Lynne

I haven't been to a naturopath since being diagnosed, but did prior to that. She gave me vitamins and supplements that I was supposed to take six times per day . . . I ended up having to go to a conventional MD because I had lupus-like signs and symptoms. I went off the vitamins et al for about three months, tried them again, and the same thing happened. So, that wasn't such a great experience.

After my diagnosis, I was seeing a conventional MD who practiced a lot of holistic, naturopathic medicine as well, but he flaked out and I had to stop seeing him. It was a sad loss.

Now, I just see my neurologists, a dietician, endocrinologist, a geneticist and a rehabilitation MD. All of them are very Okay with my interest in using vitamins / supplements to try to reduce my symptoms vs. medication, as long as they're gluten-free. So far, it appears to be working!!!

Good luck to you . . . . and if it works, keep going! If it doesn't, then stop. I've taken that attitude since my endocrinologist said, "If you don't like a doctor -- stop going to them. Don't spend your good money going to some idiot that doesn't have your best interests at heart." I thought that was pretty good advice!

Keep us updated!

Lynne

Sorry, the transracial adoptees I know are still too little to realize that they look different than their parents!!!!!

Good luck with your paper, though . . . I think it sounds like it is going to be REALLY good. Keep us posted . . . . .

Lynne

I'm finally here! Sorry to scare you guys, and VERY sorry not to follow-up on cards. The pneumonia really took it out of me . . . I basically stayed in bed for about two weeks. Spent all Christmas day in bed, my son and his girlfriend came to see me and I just had them come back to the bedroom! Didn't even feel like sitting in the living room . . . .

Then had that stupid skin cancer scare -- had to go the dermatologist because of the changes in one of them when I went to the primary care doc for the pneumonia! Had two spots that he took chunks out of -- they had inflammatory cells, some other kind of cells, but no cancer. So, I'm safe -- he also burned off several other places that had the potential to become cancerous. I looked like a leper.

I'm still alternating sleep/awake -- like posting at 4 in the morning . . . . I have two doctor's appointments tomorrow, and at some point, I'm supposed to start physical therapy three times per week. Gee.

Ought to knock on wood, but I haven't had a really bad fall for about two weeks! My bruises are almost all gone since I was in bed for all that time!

I hope you all had a GREAT Christmas and a fun New Years . . . Here's to ALL of us having a happy, healthy 2007.

Love to you,

Lynne xxxooo

Since we're talking about eyes . . . . I have plugs in my tear ducts because I don't produce enough tears . . . no big deal, really, and I'm going to have them cauterized so that they scar shut. The plugs come out too easily, and my insurance doesn't cover them. It could get VERY expensive, at this rate! I haven't ever had a problem with gooey eyes or anything like that . . . .

My question, though, is with regard to the new contact lens solution that claims to keep your lenses more moist during the day. We just got this, and the first day that I used my lenses after that, I ended up looking like I had pink-eye. It was icky. Then, I just used some anti-inflammatory eye drops that I have, it cleared and things were fine. I tried the lenses again -- same reaction. It wasn't as if I had pink-eye prior to soaking my lenses in the stuff.

The solution to enhance moisture in lenses (all brands) contains propylene glycol -- it's what they use to de-ice airplanes -- so I'm thinking it's probably not the greatest thing to be putting in my eyes, but I was wondering if anyone else had a reaction to it.

Any thoughts??????

Thanks,

Lynne

ANGIE!!!!!!!!! Congratulations!

Creative Soul -- what a GREAT story. I am so glad that you have those kind of people in your life. What a blessing! Plus books on tattoos . . . very cool.

My favorite gift? Hmmmm...... tough call ........ has to be a tie between my Aerosmith pajamas and my HUGE book about Faeries. Oh -- and I got a call from my doctor that my skin biopsies (lots of sunburns as a kid) were NEGATIVE!!!!!

Okay, I have asked this question probably too many times before, but I have had a new experience with it. I developed what looked like the beginning of chicken pox (only smaller) on three spots of my leg -- all in close proximity. It was after I accidentally consumed gluten in generic antibiotics I was given. They itched like CRAZY -- because they started "popping", I covered them with a Tegaderm dressing to keep the fluid from moving to other areas. Now I'm left with some mild scars (I scar pretty badly anyway). The dermatologist said that it sounded like DH, but would have to biopsy them when they're active. Given that I'm gluten-free, I'm hoping it doesn't happen again! Is this what DH is like, though?

Any help would be greatly appreciated!

Thanks,

Lynne

Hey Angie, would you happen to know off-hand the names of the free hosting sites? Was considering "ink-frog" for that exact reason, but their minimum charge is $9.99 per month. I think it would still be cheaper than what ebay socks to you at the end. (no pun intended, I'm serious.) See, I manage to say things that would potentially get me in trouble when I'm TRYING to be serious! UNBELIVABLE. It is the story of my life . . . .

Love & Hugs,

Lynne

Mine . . . "Hark! The Herald Angels Sing".

Each person responds differently to each medication. I would make sure that my physician is very well-versed with regard to anti-depressants; quite often, the most information they have about them is what they receive from the sales representatives. Otherwise, I would see a psychiatrist, who HAS to stay on top of each of the medications (not that they aren't bombarded with sales reps, also).

Typically, the goal of a physician when you are having malaise and general aches and pains, is to get you to be able to enter REM sleep. When you are in REM sleep, you secrete Growth Hormone. When you are a child, it is used, of course, to grow . . . but when you are an adult, it is used to repair the damage of the day! If you are not able to get into REM sleep, your ability to heal can be reduced. Also, sleep deprivation can cause an increase in the PERCEPTION of pain. Not that it's in your head, just that it is MAGNIFIED in your head. Your body receives a pinch, and your brain perceives it as if it were in a vise. Anti-depressants can be very effective methods of pain control.

Regardless, I would talk it over with my physician, and I would keep in close touch with him/her with regard to its efficacy and/or side effects.

Good luck to you,

Lynne

I feel so sorry for that woman. How embarrassing. I'm sure she was humiliated . . . .

That was really sad. I hope she gets tested for Celiac.

I found some links that deal with Neurological Celiac (some are better than others!):

Open Original Shared Link

Open Original Shared Link (this one has a LIST of neurological cond.)

Open Original Shared Link

Open Original Shared Link (This one was written in 1999!!!!!)

Hope these help!

Lynne

I was VERY surprised that it worked. I was skeptical . . . as I usually am! At one time, I had a PCP who told me that, because for 3 weeks I had been having a headache in one area in the left front -top of my head, that I could have an aneurysm, and I needed to go to a neurologist!! So I go . . . and he puts me on elavil and neurontin -- and I have NO CHANGE in symptoms for WEEKS. Then, a friend tells me to see the ENT for whom her sister works -- he is an excellent diagnostician, and could tell me what's wrong. He looks at my MRI and says, "What are they doing for that sinus infection?" I asked him "WHAT?" He points to this big area over my left eye -- it's kind of big, and it looks like it's pushing my brain back. He said, you have so much infection, it's actually placing pressure on your brain . . . that's why you have the headache where you do." He gave me antibiotics, nasal spray, decongestants -- I was headache-free within three days! I had been told that I needed sinus surgery because of scar tissue that had built up -- he is very ANTI-surgery. He said that it would just create additional scar tissue, and would offfer no change in my symptoms. That's when I changed PCP's and the new guy started talking about yeast.

Before I underwent surgery, I'd try the nasal wash. I was shocked that it worked. I thought it was going to be one of those things that was good in theory, but in practical use was rediculous. Oddly, a few weeks ago I saw my allergist/immunologist and was telling him about this, and he said, "I have a secretary with chronic pseudomonas in her sinuses." I told him to tell her about the nasal wash, and he said, "Do you know what the ENT's around here would say to me if they knew I told someone to actually put PRO-biotics in their sinus cavities when they are prescribing ANTI-biotics????" I used the dark, warm, moist analogy, and he said that it made perfect sense. He said he may tell her that a patient did it, but wouldn't SUGGEST it!

Good luck to you . . . I know the whole yeast-thing isn't easy. Been there, done that!

I actually ordered Freeda Prenatal Vitamins prior to my daughter's wedding (my daughter said it would help my hair grow . . .figured it can't hurt, might help!). They're fantastic. No horrible "vitamin-y" smell when you open the bottle, just very faint. They're reasonable, and they deliver right to your door -- quickly. Freeda Vitamins are everything-free: gluten, dairy, yeast, color, etc.

My kids and I are ADHD or ADD . . . all have tested with high IQ's. Go figure . . . .

That was GREAT!! Thanks for sharing!

My long distance friend Karen sent me cake mixes, brownie mixes, alfredo sauce and chicken soup base that I can't get here . . . .

My long distance friend Armetta sent me Tinkyada (sp?) pasta -- lots of it!!!!

Also, you could send her the newest GIG lists -- they have two now, split into Foods, etc. and Medicines.

Karen -- I can send up an extra space heater and a 50' outdoor cord, if you need it. Give him some extra blankets, too. Sure you guys up there have sleeping bags that are rated for below zero. I also have a little electric/or/ battery-operated T.V. It gets crappy reception, but then again . . . . Maybe someone else has a little hot plate . . . he could heat up some Chef Boyardee Ravioli on it -- right in the can. He can keep drinks cold outside. I'm thinking that we have a whole package deal going on here for him. Naaaaaaaahhh.... he wouldn't have to help around the house -- he might like it too much!!! No, make him stay INDOORS in the INSIDE doghouse!!!

BTW: I love your new avatar. Did you design that cat?

Also -- for all you Canadians -- I'll be happy to be your U.S. Altoids hook-up! Walgreens has buy one get one free every other week -- the clerk knows me by name

I am going crazy, sorry. Does anyone know - if you kill aspergillis or systemic candida, can you stop being gluten intolerant?

I absolutley can not eat gluten, any sugars including plain fruit, or I think dairy.

Thanks for any help

I had chronic sinusitis for what seemed like AGES! I had taken tons of antibiotics and had been on Prednisone for another condition for a long time. I had also used cortisone nasal spray. My PCP said during a visit that my breath smelled "yeasty". I told him that I thought it did, too, and that my feet didn't have "stinky feet" odor, but smelled like pseudomonas. (I treated wounds -- you can tell that smell!) He said, "No, it's Candida . . pseudomonas is rare." I said, "I KNOW the smell of pseudomonas!" I was lucky that I can banter with him. I also said that sinus cavities were warm, dark, moist places and what better place for pseudomonas to grow? I also said that everything I had taken in the past would contribute to the growth of pseudomonas. I ended up getting probiotic capsules, emptying one into a small amount of cool, purified water (heat and/or Chlorine will kill them), then using the water as a "nasal wash". Within three days, my sinus infection was gone! My "yeasty breath" was gone as well. I continued taking the probiotics by mouth, as well, continued the washes for 7 additional days, and I kind of "de-sugared" during that time, as well.

That being said, it did NOT have any effect on my gluten intolerance . . . . sorry for that part

Guys -- must wreak havoc this month!! Last month we didn't get into any trouble . . . . Scott, get your nitro pills ready . . . . !!!!! (Just kidding -- as we all know, I'm on a mission NOT to get into trouble [much] this year)

I have Neurological Celiac, but the lab which drew my blood did not have the capability for testing for HLA-DQ1!!!!!!! I know I'm negative for 2 and 8 -- but don't know if they did any sub-types of that! I have been referred to a geneticist, and he is actually doing mitochondrial testing. When I return for my follow-up, I do have planned to asked him about testing for HLA-DQ1. I simply would like to know . . . .

I think one of the best articles with regard to Neurological Celiac comes from the 10 International Symposium for Coelic Disease Pathogenesis and Outcomes . . . . My GI doc asked me to send him a few articles on Neurological Celiac and I sent that one as well as a couple more that were from other MD's.

I think that Neurological Celiac is difficult to diagnose first, because it has just come into the "limelight", so to speak, and second, because GI docs used to think that antigliadin antibodies were "nonspecific". Actually, in the 1970's, a physician published an article introducing this theory. Dr. H. has really taken the ball and run with it - to the benefit of a LOT of patients. My personal Neurologist has diagnosed two additional patients after seeing me, simply because they had no "apparent" cause for their ataxia, and he immediately ordered antigliadin antibodies. These individuals, because they were caught so very early in their disease process, are at much higher functioning levels than I am. One only needs a walker, and one doesn't even need that!

If you do not have insurance, perhaps a clinic affiliated with a University would run only the antigliadin antibody tests? This would at least give you an idea of whether your body is producing antibodies to gluten. Then you would know, beyond a doubt, that you need to be gluten-free.

Good luck to you,

Lynne