tiredofdoctors

I had the big C for two years . . . finally my GI put me on Miralax. I know is gluten-free, because he's a Celiac specialist. I recommend it HIGHLY!!!!!!!

My daughter was just tested for Celiac because of other things, but my son has not been. My son, however, is WAY on the bandwagon with me with regard to gluten-free cooking, and he has said for a very long time how TERRIBLE he feels after "carbs" (meaning pasta!).

Are your kids open to receiving information with regard to Celiac? If not, leave the one that will scar the poop out of them that has to do with neurological damage. That would get ANYONE on board quickly! Or at least make them get tested . . . . .

Whatever happens, good luck to you, and please keep us updated . . . .

Yea Colin!!!!! Those are some good fine motor skills he has there! It's not unusual for babies not to talk at age 18 months . . . both of mine were one time, HUGE, and neither talked until 24 months -- then NEVER STOPPED! Eighteen months is a little delayed for walking, but not that much -- and that's for a TERM baby. In school, we were taught -- ugh -- just lost the words! You have to subtract the amount of weeks premature he was from his chronological age . . . . so he's NOT far behind for how old he REALLY is.

Celebrate a GREAT milestone!!!!! Congratulations!!!!!

I have to say that I find it ironic that Karen, Nikki and my crayon name is "Tin Man's Johnson Silver." 'Nuff said.

Hi Linda -- welcome. Please know that you've reached the right place. The people on this forum are the most kind, nurturing people -- and VERY knowledgeable. Over a year and 1/2 ago, they literally saved me from . . . . well, myself. I was in a turmoil about going gluten-free, that my doctors had said one thing, but the Mayo Clinic and Johns Hopkins said that nothing was wrong, etc. . . . I was making myself a crazy person!

Then, I came on here, and the world just kind of calmed down. Clinical findings, lab values, symptoms all started making sense. They gave me the resources to help live gluten-free, gave me internet sites to look up, and sage advice.

I agree with Patti -- try going gluten-free. You need to watch for "hidden gluten" (i.e. soy sauce), and things of that nature, but if you have decreased symptoms and you feel better after 6-8 weeks (I'm just basing that upon general healing times, although my GI says that the GI tract actually turns over in approximately 2-3 weeks), then the proof is in the pudding!

Again, welcome, and take care. Also, I hope you FEEL BETTER soon!

Lynne

Not to worry, Karen. Have spoken with my husband and he feels that the "Goddess of Altoids" cannot go without! We will mail them to you as soon as Terry is out of the dog house. In my humble opinion, however, he should stay there -- out in the cold -- for a little while longer. Again, just my opinion.

And Carla -- OF COURSE I would be on an Altoids thread! It's like a moth to the flame . . . . . . .

Patti -- I'm so sorry. I'll be sending good thoughts, prayers, good vibes --- all his way. There's power in numbers!

Funny you would mention lazy eye, and also Ehler's Danlos Type 3. I had a "lazy eye" as a teen . . . kind of an unusual time to develop one, I'd say -- usually they appear earlier. Also, I was just diagnosed with ED 3 by the geneticist. I now have developed (yet ANOTHER manifestation of this stupid disease, I guess, although I am SO diligent about remaining gluten-free) but my left eye has developed spasticity. So, when my Baclofen wears off, my left eye starts drifting out to the side. Trying to read makes me NAUSEOUS! I start to read, and my left eye drifts back about three words. I have to consciously bring it BACK to where I was, then it starts drifting again. I now have to see a neuropthmalogist. The hope is that they can inject either Baclofen or Botox into the muscle which has spasticity in order to keep it from turning me into a 1/2 wall-eyed bass.

I think that, maybe because I have a hammer now, everything is a nail! I had the most AMAZING experience at the geneticist's office. I first saw a genetic conselor -- I had NO IDEA that they had to have so much schooling to work in that capacity. The woman that I saw was not only intellingent, she was VERY intuitive. So many things that have occurred in my life, she started listing.

In the beginning of the session, I told her how apprehensive I was about seeing them . . . she said, "It's because you're afraid that I'm going to roll my eyes at you like a lot of the others have, I'll bet." I smiled and said, "Yes. I've had some bad experiences." She replied, "I'll bet. I can imagine you've had some HORRIBLE experiences. The average person has seen 8 or 9 doctors before they get to us." The MD who I saw was just as wonderful. He also told me that when a test that has been ordered is marked "cancelled" at the bottom of the report -- it's not because the DOCTOR has cancelled the test!! It's because the people drawing the blood either couldn't find or wouldn't take the time to find out how or where to send the blood! He said that from now on, I'm to get my blood drawn ONLY at one hospital here in Louisville, because he had it out with them, blew up, and evidently launched some potential legal ramifications from cancelling tests without consulting the prescribing MD. Make SURE that your lab tests aren't cancelled for that reason!

My lab only tested me for HLA DQ2 and DQ8 -- and I was negative for both. The phlebotomist couldn't find a "code" for HLA DQ1. She said that "she thought the test didn't exist." I told her it DID, I knew better.

If you are having multiple problems, I am a strong advocate for seeing a geneticist. I was blown away with the things that they were able to immediately know what to test for . . . it was just a VERY good experience.

Most who are familiar with me know that I have a boatload of neurological conditions that stem from "first high, then outrageously high" levels of antigliadin antibodies, according to my neurologist. Oddly, given that I had some neurological signs in 2000 which you wouldn't expect to be linked to this disease, I was just told by that physician that he thinks it was starting THEN. (PM me if you really want the gory details -- just don't want to post them for the world to see) It would make sense, then, why I have so many things that are permanent.

Sophiekins -- this IS a fantastic thread. For the longest time, I felt like a human anomaly. I seemed to be the only person whose only symptoms due to Celiac were neurological. It's cold comfort that I'm not alone. I am sorry for all who have neurological damage, as well. I know that it's scary, at best.

Surreygirl -- you were blessed enough to be able to see Dr. H? How FANASTIC for you and your son!! You must have been thrilled! I have tried to e-mail him to volunteer for research as a human guinea pig, but I keep sending it to the WRONG place.

Don't give up . . . NEVER give up. I have even volunteered to have my stem cells extracted and injected into my cerebellum as a research candidate. If they want to research that, I think that "Why NOT? It could possibly help me, AND it may help a LOT of people suffering from the neurological complications." My geneticist marked it in my chart . . . . .

Hang in there, all,

Love & Hugs,

Lynne

I agree with the "take a deep breath" advice! Interestingly, I had intermittent enlargement of my spleen, and my doctors would always say, "I have NO idea why it would be like this." Oddly, I mentioned this last month when I went to the allergist/immunologist, and he said, "It was probably when you were producing large amount of antibodies. It stands to reason that when your body is producing that many antibodies, your spleen would HAVE to be enlarged." First doctor I have heard say that . . . and I've seen plenty!

Once I went gluten-free (over 1 1/2 years ago) I haven't had an enlarged spleen since. My guess is that about 6-8 months (sorry, that's the bad news) you will feel like a new person! You will probably feel BETTER prior to that, but it does take awhile for the antibodies to decline. So, relax, take a breath, and know that everything is going to be FINE.

Hugs to you,

Lynne

My husband's elf name is Booty Sugar Butt (must say, definitely one of his better "assets" )

My rejected crayon name is Tin Man's Johnson Silver ----------does it not figure???????

Dave's ----------- Spank Me Pink

Oh my . . . . . . .

That seems to be a common thread among husbands!!!!! Can't wait til mine hears MY elf name!

Ahhhhhh, don't "poor Terry" him . . . his doghouse days are well-deserved. Karen should just be stock-piling for when he shapes up!

Wow -- you have certainly had your share -- Why was 1/2 of your thyroid removed? Do you have continuing autoimmune thyroid disease? According to my neurologist (one of them), autoimmune thyroid disease is NOTHING to be taken lightly. He even called the Ear, Nose & Throat surgeon who was performing my thyroidectomy to ensure that he not only took out both lobes, but he also took out the isthmus (small portion that connects them that, evidently doesn't get removed) as well.

I had posted a fairly large list of articles with regard to the neurological manifestations of Celiac. I'll try to find it -- if not, they're really easy to look up. Look up antigliadin antibodies and neurological manifestations and you'll get an entire PAGE of information. The best work is still being done in the United Kingdom. The guy there (Dr. Has . . . . ) was ridiculed as a quack 5 years ago . . . . I think I even said in the post, "who's quacking now" (I remember now . . . someone was saying that they were ranting -- but it really wasn't such a rant . . . .)

My elf name is Trixie Ho Ho Ho . . . . I hope they're referring to my jolly nature and not to some personality flaw!!!!!

I would be compelled to sign said person up to bring a large rat poison lasagne. Then I would tell her that gluten and her pasta salad has the same effect on you as that rat poison lasagne would have on everyone else.

That's the best one yet!!! We had Thanksgiving at my in-laws, and my MIL -- bless her heart -- just doesn't get cross contamination. My SIL, though, does, so she called, asked me about ALL of the ingredients, and made a special dish WITHOUT the cracker crumbs first, then covered it so that I would have SOMETHING to eat. At my mother's, my cousin was getting ready to put rolls in the oven. My aunt asked what a particular dish was, and my mother said, "Oh, that's Lynne's macaroni & cheese." She was standing right by the oven, so I quickly asked, "Is it covered?" No one answered . . . I again, kind of frantically said, "Is my macaroni & cheese covered?" My aunt turned around and said, "What's the big deal . . . there's no flour around here." I said, "Well, those rolls are getting ready to go into the oven, and if even a CRUMB gets into my macaroni & cheese I can't eat it." My aunt did the eye-roll thing. It made me furious, and my mouth just took over my body. I just looked at her and said, "You know, if I was a REGULAR 'stomach' celiac, I would throw up, have diarhhea, things like that. But one crumb of bread means that I will have at least one more brain cell destroyed. If it gets to my brain stem, you guys will have a neice that's a vegetable. On life support. Who's going to decide to pull the plug?" The whole kitchen got VERY quiet (we're talking a really loud family -- my mom & her sisters are LOUD -- not to mention, cousins, etc.) My mother said, trying to smooth things over, "Well, it's covered, so we don't have to worry." THEN, my aunts began to question my mother -- they said, "So it's an allergy?" From the other room, I said, "No, it's an autoimmune disease. Just like Rheumatoid Arthritis or Lupus." Then later on, my dad was trying to tell my uncles about it. They again said, "So, she has an allergy to wheat? My dad didn't quite get it right -- he said, "Oh no -- not just wheat, barley, rye, oats -- or ANYTHING that has it IN it. That's the problem. You don't know all the time if it's in it. It's really frustrating." I just gently said, "Daddy, you forgot the part that it's not an allergy. It's an autoimmune disease." Then he said, "Oh yeah. What happens is . . . . " and went on to describe the whole process of how it destroys the brain. I was impressed -- he's done his homework!

I think it's funny that even RELATIVES would be so callous about a disease that is so devastating. Co-workers -- it's no wonder they're like that. If they only had to live with this disease for two days . . . . .

I'm sorry to hijack the thread with my rant -- just realized I did. It just infuriates me that ANYONE would disregard a disease like this. SIGNED YOU UP TO BRING PASTA SALAD? PUHLEEEEEEEEZE. It would have been fun to have a friend cook some pasta salad and make it taste TERRIBLE. Bet they wouldn't sign you up for it again!!!!!!!

Hi Lollie! Good to hear from you . . . . hope you're doing well!

Hugs,

Lynne

I use all Neutrogena products except their microdermabrasion kit -- which happens to contain the EXACT beads that they use in the dermatologist's office. It does, however, contain wheat protein. So, no way. But like Patti, I use their lipsticks, their lip smoothers and lip tints.

Almost all Bare Escentuals products are gluten-free ---- except their lotions and that new stuff they have for at night. Also, a few of their lipsticks contain gluten -- not many, but you have to watch.

Nars products (found this out from Jenvan when we went shopping at Sephora!) are all gluten-free -- and they're pretty great! Makes me happy!

I have the neutrogena "safe" list -- the only thing that concerns me about it, though, is that it says that these products don't contain WHEAT -- or something like that. They don't say GLUTEN. Kind of makes me a little nervous, but no one else has had a reaction, so I'm banking that it's safe. It's kind of hard for me to know when I've been "glutened". . . . . If you want the list, I'll be happy to forward it to you . . . just PM me your e-mail!

xxxooo

Lynne

My mom has a recipe that uses flour, but she "tweaked" it with cornstarch, instead, for me . . . . I'll ask her about it. She also used the pie crust recipe in "Living Without" (but used regular gluten-free flour substitute instead of mixing all those different things) and "tweaked" it as well, because it was a little sticky . . . I'll let you know . . . .

Lynne

Hi and Welcome! It's not in your head, it's in your autoimmune system! Here's to starting to feel better!

(((hugs)))

Lynne

You might want to check these out:

www.bmj.com/cgi/content/full/318/7200/1710

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link --- THIS ONE WAS IN 1999, folks. They knew it back then, but the doctors who were verbal about it were labeled as "quacks". Who's quacking now?????????

Sorry to give you so many, but I'm just so OUTRAGED by the physicians who tried to diagnose me with "conversion disorder" . . . . DESPITE having evaluations by 2 Psychiatrists, a Licensed Clinical Social Worker and 2 Psychologists that were to the contrary . . . and I had them done JUST BECAUSE I believed that these doctors were right! Here I have 5 Mental Health professionals saying, "No, it's not conversion disorder and it is NOT in your head." And yet, I still had one doctor (at Mayo Clinic) send the final summary as Conversion Disorder to my PCP. AND GET THIS - When I got my medical records, the Psychiatrist I saw there who said that I DIDN'T have conversion disorder -- his evaluation and summary were not included. I called him to ask about it -- he couldn't find it on their electronic documentation system. THEY HAD BEEN DELETED. He was LIVID. He wrote a letter directly to me, saying that it is NOT conversion disorder, and asked me to copy it and give it to my MD's.

Sorry about the rant -- got a little off on a tangent there . . . . .

Happy reading!

Love & Hugs, (trying to get back to the warm fuzzy kitten thoughts)

Lynne

The medication could also be why it doesn't look as bad to your PCP or NP. I would still pursue it. Since getting this stupid disease, my thought about investigating something is: can't hurt. might help.

Hope the dermatologist will help.

Hugs to you,

Lynne

Dave mowed our grass on Friday, I think it was. Every year we wonder if we'll have a White Christmas. It's been quite awhile. I WANT SNOW!!!!! Lots of it -- like when I was a kid -- and we would get to go sledding . . .

This is great -- when my kids were younger, it snowed, and I said that I knew of a hill that we could go to that was PERFECT -- and no one really knew about it! So, I pack up everything, and we head out . . . . about 20 minutes into our play, my father shows up -- with the thermos in hand. And a bag of mini marshmallows. When I was a kid, he would always make sure that we had hot chocolate whenever we went sledding or ice skating. Wasn't that sweet? It made me cry.

I'm trying to figure out a way to put rudders on my wheelchair -- I think I have a plan, although I MAY have to invest in a seat-belt for my chair! If you guys thought they got out of the way for me in Vegas when I was tipsy, just imagine me on a sledding hill in a rigged wheelchair! HA!

You guys . . . . I don't think that I do anything more than any one of ALL of you do! You amaze me. Poor Armetta -- I talked with her yesterday, and she sounded terrible. I didn't get to talk with her today -- we were gone all day. I ACTUALLY WENT OUT OF THE HOUSE!!! And not just for a doctor's appointment (although that's what tomorrow is . . . ), but to have fun!!! I think I may be coming out of my "hermit" phase. Except for doctor's appointments, and two days last weekend at my mother-in-law's, I haven't left the house for over a month, I think. That's pretty scary -- I hadn't even thought about that. NO WONDER my neice asked me WHEN we were going shopping again!

I guess maybe I don't tell you enough how much I appreciate all of you. You have helped me so much. I was so frustrated and so reluctant to go gluten-free when I joined (a year and a half ago), and there have been so many people who have helped me more than I can say.

Thank you again . . . . I still don't know what to say . . . . . you are simply the best.

Oh, by the way . . . if you need REALLY good recipes, contact Jen (JenVan) . . . she is a FANTASTIC cook and baker! You should have seen the spread we had when Brandon's girlfriend drove me up there . . . . it was beautiful AND delicious!

See what I mean . . . what amazing people you ALL are. Thank you for being an important part of my life.

Love & Hugs,

Lynne

That was an excellent description of Celiac disease. I have neurological celiac, as well. Caught it a little late, so I'm in a wheelchair. If I'm not, then I fall a LOT. I have really poor coordination now, occulomotor apraxia / ataxia, difficulty swallowing, autonomic dysfunction . . . . and on and on and on . . . !!!

There is a type of cell called Perkinje cells in the cerebellum of the brain (and in the retinas of the eye). Perkinje cells have a protein on (in?) them that VERY strongly mimics gliadin, because Perkinje cells rely on gliosis. So, when you have antigliadin antibodies, they can mistake the proteins on the Perkinje cells for gliadin, and destroy them. Then, you have lapses in the transmission of the cerebellum -- which is command central for your brain. Everything flows through it. In the United Kingdom, they have done Magnetic Resonance Spectroscopy in order to map the synapses of the brain. What they found in patients with neurological celiac is that the cerebellum (depending upon how severe) has simply had so much damage that there are multiple lapses throughout -- making it VERY difficult for the body to function normally. Since it's late, I'm not really thinking clearly, so I can get that link for you if you'd like.

I wish that more doctors, when going on television now, would emphasize that celiac IS an autoimmune disease, and that it IS systemic. It would be nice to have all us neurological celiacs on a show and say, "THIS is what Celiac looks like, too!" Sure would be a shocker, huh???!!!

Gluten free living is really NOT that bad, nor that hard -- once you get used to it! Our house is gluten-free, and my mother will cook all my food prior to everyone else's and in special dishes when I go to her house for dinner. My mother-in-law tries really hard, but after she's made my gravy with cornstarch, she puts it on the back burner while she's sprinkling flour into the pot in front of it!!

I hope your bone density gets better -- that has to be a little scary. I haven't had that done, but I've fallen so much that if I haven't broken at least 8 bones, I have to be doing O.K.!! I don't know how long it takes to see improvement with the treatment, but I hope it's FAST!

Good luck to you . . . this forum is a FANTASTIC place to get information, vent, question, discuss -- with some really great people. You're in the right place. Good luck going gluten-free, as well. There are so many things out there now that can help you with what's O.K. to eat, use, etc., and a LOT of the people on here are SO KNOWLEDGEABLE about finding information! If you need help, just post a new topic -- NEED HELP -- and you will have so many people helping you out. It's pretty amazing.

Take care,

Lynne