Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About cwj-tlj

  • Rank
    Top Contributor
  1. Totally gluten. It will get better the longer you are gluten free. The first 2 years if I got glutened I was literally suicidal crying in the bed. Now I am just relly down and lethargic for 2-3 days. Thank God! However when I am in it it feels like am going to be there forever.
  2. My symptoms were exactly like that. I become bascily Bipolar and have been treated for this while I started into recovery but have since gotten so much betterI am now only on lexapro which I am considering going off of. Now when glutened I defenitely have symptoms of insomnia cured with 1/4 Ambien. I also have depression mixed with mania.
  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. Just back from Mayo...Forget going there for help unless you have the classic celiac genes. I am having severe reactions with each accidental glutening. Neuro symptoms worsening with also now BiPolar symptoms . Anyone know about this? Thanks Bx neg after gluten-free 8 mo Blood neg after GF8 mo enterolab + caseine and gluten DQ3/DQ3
  5. Because I went gluten-free before blood tests and biopsies and don't have the right Gene for celiac I can't seem to find anyone to help me because I'm not classic celiac. Does anyone know any experts on this that will take me seriously . I'll go anywhere!!! except Mayo tried this already.
  6. 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?
  7. 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?
  8. Check out new drug called Provigil....Helps alot with daytime sleepiness. I couldn't function without it when I'm glutened. Thanks
  9. 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
  10. 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.
  11. 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.
  12. 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
  13. 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.
  • Create New...