6ft6

I lost my job Monday. I received a severance at leat, but it won't be easy to find something new. It was really awful for several months. A re hostile workplace situation with no accommodation of my illness. I can now focus on my health instead of the fear of job loss, but this really sucked. All of you out there hang in.

6ft6

i've had the same experience as the original poster at two different locations. i don't go there any more.

No input from anyone?

I know exactly how you feel and you are not alone. Are you on any medications, prescription or over the counter? I keep having problems of pharma companies change their formulation or generic mfg provider and then a drug that was safe starts to make me gradually worse and worse and worse, until I can't even stop the tremors or even get out of bed. I've been two years trying to be gluten-free now, and am failing miserably. You have to start with the basics - raw fruit, veggies, plain rice, baked potato, unseasond meat or fish. that sort of thing. Watch out for the chicken and pork - often have additives that contain gluten. Then add some special certified gluten-free treats.

Clean the kitchen and get rid of any plastic, wood, or nonstick that has ever touched gluten. Scrub everything. Hopefully that will give you a start and good luck!

I have severe neuro symptoms: twitching, sweating oil, ataxia, weakness, tremors, vision problems, brain fog, difficulty breathing, severe foot pain, numbness and tingling in hands and feet, maybe others i can't think of right now. I fall over in the shower sometimes when I close my eyes to wash my hair. I was going to a "celiac specialist" at a prestigous U med center - she had never heard of this.

I'm not going back for follow ups - waste of money to educate an expert. My GP was the one who made the diagnosis and has spent more time and effort educating himself to better help me get healthy.

I'm right there with you. I literally cannot force food down when i have a full on attack. Last week i had symptoms every day for 6 days. My neuro problems were so bad i couldn't get up the stairs. I didn't eat any food for three days. All I could do was lay in bed and twitch and sweat oil. I stopped taking my blood pressure med, ate only raw food, and am beginning to improve. This is the second time that a prescription refill has put me down drain.

I too keep something with me, but it takes quite a while to get appetite back after a good dosing.

Hang in there - I was ready to toss in the towel at 4am monday morning - i've been obsessively gluten free since diagnosis 2 years ago, and i haven't had more than a week at a time where i wasn't sick in that whole time.

Hello All!

I'll try not to be angry, but I'm near my very last inch of coping with this. I've had at least 4 generic and 1 brand name medication gluten the daylights out of me. Bystolic was the first one. It was gluten free when prescribed, but they changed the pill and I was on getting dosed for two weeks after getting a refill before I figured it out. It's now listed as avoid on the drug list. The others were from Zydus Pharm. Anyone had problems with these? I sometime have bad reactions to other things, such as vaccum packaged ribs and pork. I'd really appreciate people's input and I'll collect a list for re-post.

Thanks,

6ft6

Hang in there. I've been on the roller coaster for 18 months since my diagnosis and there are times when i really have felt like throwing in the towel. But it passes and you start to feel better gradually. I found that a round or two of steroids after a serious bout is the best way to get things going in the right direction. If your doctor won't do the research and work with you then go find one that will. I also take singulair and zyrtec daily. It really makes a difference in stabilizing your immune response. I haven't found a vitamin that i could tolerate yet, but i have found that my neuro symptoms are greatly reduced if I drink diet red bull each day - gluten free source of b6 and 12 in easy to absorb form. Lara bars are a critical staple you should keep with you for meal replacement.

Also, beware of other intolerances. I have found soy to give me worse symptoms than gluten, and casein is not far behind. Strip your diet down to plain fruits and vegies and meats with no sauces or seasonings for a while and you will improve rapidly. A final caution: check all your soaps, conditioners, lotions, makeup for hidden sources. Hand soap with E added was killing me, and my wife was using a hand lotion with E that was finishing me off. Eliminated those and improvement was rapid.

I started having random problems and I am ultra careful. My workplace changed the hand soap in the bathrooms. It has vitamin E added. Ingredient: tocopherol. Now I have to use my own hand soap. Tocopherol is in everything and if it is not indicated that it was derived from something other than wheat, don't use the product. Also, look out for soy and casein. If you a really sensitive celiac, those can give you the same reaction if not worse. I didn't use to have a problem with those items, but now I do.

the mainstream peanut butters are hit and miss for me. i eat it one time it's fine, another jar and i'm sick. i put it down to the soy now that have had a couple of gluten free, celiac friendly products that gave me symptoms. only common denominator was soy. it seems worse than gluten to me.

I can count on Amy's to make me sick every time. So now I don't buy the products. I despise the ccompany.

Hello all,

I've been a lurker since my diagnoses 16 months ago. Was positive for blood tests and biopsy. I initially improved quickly, like many of you. But alas, the severity of the problem has greatly increased, to the point that when i get exposed (glutaminated) i usually don't know what it was. Things other people here use make me ill for two or more days. i'm fortunate to work for an accepting environment, but it has caused me severe difficulty at times.

Does anyone have a list of products that have been deemed safe, but have caused them an exposure. For me that is anything from Amy's Kitchen. But, frenches mustard, tropicana orange juice, and now on two separate occaisions, gluten free labled yoplait.

We have gone to extremes of kitchen cleanliness and habits. Changed to gluten free dog food, etc. I was out for two days this week from the yoplait incident and have a long recovery road back - big d for 48 hrs, sweats, and twitching. still have the sweats, but the twitching is subsiding. pain in my feet is back to tolerable.

I've gone to see a celiac specialist. they are referring to a nutritionist and ordered a colonoscopy. I have even had to have the pharmacist clean the sorting tray because i was getting a reaction from my BP pills.

How do you others cope with this. If i new i was taking a risk, i'd understand. but this comes out of nowhere and i'm donw for the count.

Any advice would be graciously appreciated.

Thanks,

Michael