Gluten Free Detox Hell

[Zephyrite]

I was diagnosed 08/04/09 with celiac disease, and immediately started the gluten free diet. The knowing-what-to-do part of this is very easy for me, since my father was diagnosed with celiac disease in 1997. And boy howdy, did the doctors know squat about it then! So, I had to become an expert on the diet fast, because dad was 110 lbs, pretty much dead, with a PIC line directly to his heart feeding him out of a bag....

My father, my sister and I all participated in a study in Boston to chronicle the genetics of celiac disease. Mine and my sister's blood tests were negative for the disease (1999). Later, in a quest for answers to lifelong GI issues, etc, I had the endoscopic biopsy done....again, negative. I think I've been tested numerous times over the years....all negative. So I thought I was safe.

A sneaky endocrinologist tested me for it this month, unbeknownst to me.....and BAM.....positive for celiac. I'm not even bothering with the biopsy, since dad has it, too.

So I started the gluten free diet, even though I felt FINE. Now I do NOT feel fine! I am miserable. In the first 2 weeks I experienced horrible joint pain and a migraine or two. It actually felt like my hips were going to come out of their sockets if I tried to walk. The hip issue only really lasted for a day. One hell of an intense day, I might add. The next day was my hands. They felt positively broken. I could hardly shower and dress....and forget trying to use a mouse (and I work on a computer all day!). My knees, my feet, my shoulders, my sternum, my ribs, my spine all had their "day to shine".... some of them on the same day. I sneezed once, and seriously thought my sternum was going to fall apart. Ouch! Every day seemed like a new pain. I was completely exhausted (and I'm normally an Energizer bunny!), and nauseous as all get out. And STARVING.....even though I was eating great (meat, fruits, rice crackers, a little sour cream and cheese, but mostly no dairy). I don't know if it was psychological hunger or what, but my stomach was growling and had that 'eating itself' kind of feeling no matter what I ate. I even started dreaming about eating a burrito....well, trying to.....I could never seem to get it to my mouth... (Take that Freud!)

(Edit: Oh yeah, I forgot the chills....I was FREEZING so often, it felt like having the flu. Uncontrollable chills off and on. Still getting those a bit.)

So now I'm on Week Four. Four days ago, I got a little rash on my upper arm (outside, shoulder area)....it just felt like a bunch of goosebumps, but I didn't have goosebumps. It only itched a little, and that was sporadic. It burned a bit more often. It got a little bigger the next day, taking over the whole upper arm (except the underarm, thank God!). And I started to notice a little on my left shoulder, too. The next morning, I woke up really early, due to the fact that my skin was on FIRE. I got up, looked in the mirror, and was covered from neck to ankles in the rash. It still just looked like little goosebumps everywhere.....albeit slightly red goosebumps in places. I've seen hundreds of pictures of Dermatitis Herpetiformis.....it looks nothing like it. They are not blistering, or changing.....other than multiplying! This morning I woke up before the crack of dawn again, as the rash is burning worse today than yesterday. My skin is on fire, with no way to put it out.

The rash aside, I still feel awful. I know I'm not getting any hidden gluten, as I'm actually an old pro about it. (My Dad called me his Food Police....or Food Nazi....LOL, depending on how bad I was shaking a chef down when Dad would try to eat out.) I've tried researching on the internet, but haven't found a whole lot on people having problems with detoxing on a gluten free diet...except on this forum. I'm quickly losing my spirit over this... I was FINE until I started this diet, but now I know I can't turn back....EVER. My Dad didn't experience any of this stuff, because he was basically dead, and had nowhere to go but up when he started the diet. (I actually got a call and they told me I wouldn't make it to the hospital in time before he died....stupid doctors don't understand the stubborness of Italians! LOL )

I've read about other people getting all kinds of food sensitivities once they went on the diet. I already couldn't eat fats of any kind, and am lactose intolerant. My dad's lactose intolerance went away after being gluten-free for a while....one thing to look forward to. Hell, the ONLY thing to look forward to at this point! I don't think I can handle finding out I can't eat anything else right now. I know, the 'poor me' thing is not an attractive quality.....but I'm feeling pretty unattractive as it is, covered in this ugly, burning rash.

Has anyone else encountered a rash like this? Day Five, and it's still just looking like goosebumps and burning like crazy. Where the hell is that light at the end of the tunnel?!?

[Mrs. Smith]

I have experienced every one of these symptoms POST gluten-free diet! It did turn around though, you just have to give it time. Your body is finally able to do it's job and get the gluten out of your system! I did get a rash on the gluten free diet. Its on my hands and feet. Its slowly going away with a few small flare ups here and there. Alos for some reason now when I do make a cake for a party or my kids, I get itchy knees! I stuck out the gluten-free diet because I really believe in it so much. 6months into it, I felt better than I did when I was a kid! I am 30 and I have more energy than I ever did! My periods are less painful. I have very normal BM's ( I never thought that would happen!) I can only speak from my own experience, but I was as discouraged as you are a few months ago. Now I wouldn't eat gluten if you paid me! In the end it was worth the struggle for me and I probably have a long way to go. So, if I feel this great 8mos into the diet, I can only imagine the years to come! Hang in there, this is a great place to get the encouragement we all need when on this special journey! Vitamins!!! Cal/Mag, methyl b12, DHA, D, acidopholis all helped me along the way!