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cwj-tlj

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  1. Hi, I'm sorry if this has been posted before, but I'm curious for feedback.

    I'm a 26 year old female with a history of anorexia nervosa. There is no celiacs within my family that I know of/ has been tested for, although my mother (biological) has severe rheumatoid arthritis. I however don't talk to my family, so if something was awry I wouldn't know.

    I have some of the classic GI symptoms of celiac - bloating, gas, abdominal pain/discomfort - constipation, but never diareeah. I have these symptoms even when my ED (eating disorder) is in complete remission.

    I have ALOT of possible neural symptoms... neuropathies affecting my peroneal and tibial nerves in my left leg for sure - possibly the sciatic in my left leg and my left arm. I get weird involuntary muscle spasms of my lower left eyelid, but they're not associated with any other visual disturbances. On two occasions I have had visual disturbances (blurred, double vision). I get severe headaches. I also have severe night sweats (menopause ruled out and sleep apnea under control) wherein I drench my pjs and the sheets. I also have alot of mood problems (irritability, depression). And about 6-8 months ago I had severe problems walking, although I'm not sure if my gait was exactly ataxic. And I have polycystic ovarian syndrome (so if I'm not on the pill I menstruate 2 or 3 times per year), yet I"m not diabetic or overweight.

    All the neural symptoms began approx a month into my last anorexic relapse (I am currently at a stable and healthy weight and have been since April 2010). The neuropathies in my left leg have improved, but are still not nearly 100%. All the other symptoms have not improved. Does anyone know if celiac can be brought on by starvation/ anorexia?

    My doc has ordered a serological screen, but I've been advised to wait a month and eat a heavily gluten-ated diet during that month to try and prevent a false negative. Additionally I"m getting a couple of CNS MRIs done at the end of August. If all my neural symptoms are still so pronounced, do I really need to wait a month to avoid a false negative?

    Has anyone else had a similar experience? Even without the eating disorder? Can you get celiac without having a relative who has it?


  2. My anxiety and depression have improved -- I don't know if that's directly related to the gluten or to the fact that off gluten I can actually sleep (insomnia is my primary symptom when glutened and can certainly be a factor in mental health -- the GI stuff is no fun, either, but I'd take that anytime over the days of no sleep).

    I got glutened for the first time in a long while on Monday, and today, after two nights with no sleep, I feel the worst mentally/emotionally than I have in a while. Yesterday I was manic -- the world was perfect, I was super excited about every little thing from checking out books at the library to the songs that popped up on my ipod random player. Today I've been having trouble keeping my mind off suicide. That's generally how it went with me -- I'd pay for the manic days with long bouts of depression. I've always functioned, so it's not as bad as some people's, but it can still be pretty rough. Since going gluten-free, I've evened out considerably. Anxiety-wise, I haven't been freaking out about social gatherings where I don't know every single person or driving on the freeway and other totally ridiculous things that make me break into a cold sweat and make my heart beat out of control.

    That said, I've got no doctor monitoring these things so I don't quite meet your criteria for a response, but I'm not the only person to have noticed the change in my behavior and mood.


  3. Ok , here's the deal as I understand it...I got much better for the first month, then I got much worse even on the diet. A sort of hypersensitivity sets in whereas any minute amopunt of gluten will cause a severe reaction. My guess is you are still getting glutened. Do like everyone suggests and check everything. Things I ate the first month that didn't cause a problem the first month actually had gluten in them and I didn't realize it for awhile until i double checked because I had eaten it without any problem , I thought. This hypersensitive period will subside anywhere from 6-18 mos. Now when I accidentally get gluten or casein I still get sick but for 2-3 days , not a week of the worst hell I have ever experienced

    This disease almost killed me.....BTW noone is smart enough to get it right for awhile!


  4. I am gluten intolerant my blood and bx's were neg but done after gluten free for 8 mo. enterolab +

    My 12 y old

    gliadin antibody IGG positive 31 range >17 pos

    tissue transglutaminase IGA neg

    gliadin antibody IGG positive 31 range >17 pos

    gliadin antibody IGA neg

    Immunoglobulin A normal

    C react. protein normal

    Ferritin 29 range 10-143

    question : should I see ped GI or just go gluten-free?..I'm afraid he won't be taken seriously as I have been if we don't take the classic route ie biopsy etc. if he has problems down the road. What do you guys think?


  5. Beware somewhat long:

    Diagnosed with gluten intolerance by enterolab 5/07: gluten free the day I sent off the test.
    Had the best month I can remember. Sx's: recurrent bouts of DEBILITATING fatigue with herpetic mouth ulcer worsened over 2 years came to a major crash after eating Kashi bars(whole wheat,barley,rye ) 2-6 per day I loved those things!

    Thought I was cured ,but became hypersensitive with each accidental glutening the symptoms worsened to include neurologic sx's of dementia,fatigue so severe I literally can't get out of bed for 2-3 days only to pee, severe suicidal depression/anxiety this typically lasted 3 days with another 3-5 days of sluggishness inability to wake beore 11:00 unrefreshed sleep things like this.

    My DH became very worried and insisted I go to Mayo. I was willing as I have become seriously debilitated to the point of temporary leave from my own business(Medical by the way) I went thru the whole 9 yards ,psychiatrist, endocrine,allergy Gi. Blood drawn including Hla. They basically considered Fine's teste invalid and told me they could not help as my BX and blood tests were neg. DUH! after 8 months gluten-free. I said why don't you feed me gluten and see what happens? This was felt to be nonscientific.
    HERE'S THE DEAL if you don't have classic celiac you don't exist. They said well if you do feel better gluten-free then stay that way. Dr Murray has a special enterest in enteric neuroscience that's why I thought they might help me, Also I had one low cortisol on a lousy day 2 days later I felt great the repeat was normal. I feel my adrenal gets stressed during glutening making my sx's so severe. anyone else with same experience?


  6. I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

    Check out new drug called Provigil....Helps alot with daytime sleepiness. I couldn't function without it when I'm glutened. Thanks


  7. The same stuff happened with me until a year ago, when I ran across an ad on a website and then everything made sense. Going gluten free has changed my moods, gotten rid of most of the depression, made the neuropathy symptoms lessen, etc.

    The depression comes back if I get glutened, plus a bunch of other things. I've had this for a long time because I can't remember a time in my life when I wasn't in the bathroom 20+ times a day.

    I just wish my hair would grow back. I was lucky to get super thick and curly hair, it's not quite as obvious that I've lost 2/3 of my hair because it's still thick looking. I have PCOS too, so that causes hair loss and problems, so the hair probably is gone for good. :(

    Not necessarily so. Check out the drug spironolactone (if you are a woman). Also great ,but very expensive hair treatment by Jan Marini with spironolactone in it. Hope this helps


  8. Topic title really says it all.

    I started my gluten-free diet yesterday and was just wondering others experiences.

    3 days. I new immediately gluten was my problem before I even got any tests back. After a week I was on a pink cloud. Have had problems figuring it all out and I think I got supersensitized after going off, so I am being super diligent now after a few really bad episodes. Can't wait til the real me comes back. If you are like me, going gluten free is not an option. Now it's all about staying well. Lots of luck. Life can be really good off of gluten and also dairy for me.


  9. I've just about quit eating out for the time being and when I do, I don't do fast food. Even the stuff I cook at home, I keep simple, with few ingredients and stuff I KNOW is not a problem for me. It's an adjustment, but I think you'd be better off to play it ultra safe while you're in this highly reactive state.

    If you do eat out and you order something like that salad and it comes out wrong, send it back. You need to be polite but very clear with your server that your food must be uncontaminated... they can't just pluck off the croutons or onion ring and send it back out to you... that it will make you very ill. No restaurant wants a lawsuit on their hands.

    And I agree with the previous poster: always carry some gluten-free snack items in your purse or car so you're never caught with that desperate, hungry feeling that makes you take chances.

    Thanks for all of the suggestions. I guess "discipline" comes to mind and "even a molecule will get ya!" Got to get better at going to the store more often so I'm not at risk. My life is totally unmanageable with gluten. In fact it's close to wrecking my life at this point. I would just love to get a few weeks under my belt so I can remember how great I feel when it's all out of my system. Going to keep it simple for a while. Thanks everyone and am grateful my condition is treatable at this moment.


  10. I was diagnosed 3 months ago. At first I felt better than I have in years. Then it seemed I couldn't stay unglutened. I have been sick once a week for 4 weeks. I have had MRI of the head to apease my DH and boss. 3 days ago I ordered a Sonic salad minus the cheese and opened it up only to find a fried onion ring. Normally ,I would have thrown it away however I was starving and just took off the ring and all of the surrounding lettuce. By the next morning I felt very fatigued and went to bed around 5pm and didn't get out of bed literally for 17 hours. The week before I got equally as sick on a work trip because of flouridex gel which only after I called the company they said there was a byproduct of gluten. Seriously this is really tough. Has anyone had this much trouble getting well. My doc says I am very sensitive now but this may get better with time.

    Thanks in advance for listening.

    Anyone else had problems with flouridex gel ? I guess I should have not eaten the salad. Is anyone else had a similar experiece? Thanks


  11. :rolleyes: I know this may sound strange but the alternatives didn't sound good and I am feeling better than I have been for years. It's fun to be getting older and feeling better. of course it cast lots of money and after finally finding the right doc to put it all together.

    I was having severe mental changes like suicidal thoughts, guilt, etc. Seriously I felt if things didn't get better I would end up in the psych. ward. I feel very strongly about the possible number of people who are on suicide watch eating a steady diet of hospital gluten ridden food.

    After going gluten free I was better mentally in about 12-24 hrs and physicaly in about 5-7 days. Of course I did test it once and back into hell I went for 3 days. I have been battling vague episodes of severe fatigue and flulike symptoms as well as chronic oral HSV really for 18 yrs. Got worse after my second child was put on antidepressants which kept me going for another 8 yrs. until a "crash" on a vacation in April from which I never recovered thanks to Kashi bars daily. I've always been constipated and a bit overweight so my symptoms weren't apparant. However I was Dx'd with Crohns 10 yrs ago from which I thought had grown out of . Little did I know I was poisoning myself.

    Anyway thanks for letting me lurk for a few week and helping me get to this point. I'm sure there will be more ups and downs and I still have lots of questions.

    T.J.