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Gluten Free Detox Hell


Zephyrite

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Zephyrite Newbie

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. :huh: 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! :angry: 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! :blink: 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. :unsure:

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?!? :ph34r:

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Mrs. Smith Explorer

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!) :lol: 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!

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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