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Help! Am I Normal?


jcronan

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jcronan Rookie

HELP!

I am new to the forum and to the Gluten Free lifestlyle. I am still waiting to hear back on the genetic testing. I had an Endoscopy & Colonoscopy done last month and they were inconclusive for Celiacs, but confirmed Chron's. My GI seems to feel based on my symptoms and medical history that there is a good possibility that it is either Celiacs or some other related intolerance. It has been 2 weeks since I took the blood test and I am going crazy waiting. I was told this often has to be sent out to an out-of-state lab and it could take longer than most tests.

I have many of the symptoms of celiacs including a diagnosis when I was an infant. It was never explained to my mother at the time and when I started eating solid foods she simply included wheat/gluten based products in my diet. I have had severe headaches (including migranes) and sinus issues- however my stomach issues have been off & on until the past few years. Now I have issues after almost everything I eat. Additionally, I have had a great deal of weight gain in the past 2 years, desipte a healthy diet & regular exercise. I even ran my first marathon a few months ago. As soon as my training stopped, the pounds came on like crazy even though I still run and cross train frequently.

After reading a great deal on going Gluten free I decided that I would take the plunge and started a few days ago. I do not eat meat (only fish) so it has not been all that easy.

I am looking for any advice from those who have had similar experience. Should I stick to the gluten-free diet? Should I introduce some meat back into my diet? And most of all, will I stop obsessing over this once I learn more?

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Korwyn Explorer

If you had a diagnosis as an infant, you have Celiac Disease. It doesn't go away and you don't get over it. Yes, you MUST stick to the diet. See previous statement. :) And I've always considered fish to be meat! :o And probably no, you won't stop obsessing! =) Depends on how seriously you take this disease I guess. I don't think that having an ongoing, continuing interest in your longterm health and extending your life is an obsession. But that is just my opinion. I may be obsessed with it myself and so not the best judge for that answer. :lol:

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jcronan Rookie

If you had a diagnosis as an infant, you have Celiac Disease. It doesn't go away and you don't get over it. Yes, you MUST stick to the diet. See previous statement. :) And I've always considered fish to be meat! :o And probably no, you won't stop obsessing! =) Depends on how seriously you take this disease I guess. I don't think that having an ongoing, continuing interest in your longterm health and extending your life is an obsession. But that is just my opinion. I may be obsessed with it myself and so not the best judge for that answer. :lol:

thanks for the information. I should clarify, although I was diagnosed as a child, my mother doesn't believe they ever tested me. Her fading memory & the lack of records going back that far (I am 41 now) is the reason I can't be sure they were accurate. As far as the fish-- I don't claim to be a vegetarian (although I was for many years). I haven't had meat other than fish for over 20 years so it is usually easier to explain that way. Again, I appreciate the advice. I hope that my obsession will help me to keep focused.

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Korwyn Explorer

Well if you were diagnosed as a child there must have been some significant indicators sufficient for a diagnosis at the time.

On another note, while not a vegetarian (opposite in fact as I eat mostly meat), there are a number of vegetarians and vegans on the board here. What specifically is it that is causing you to feel it will be difficult to maintain a gluten-free life as a low or non meat-eater?

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jcronan Rookie

Well if you were diagnosed as a child there must have been some significant indicators sufficient for a diagnosis at the time.

On another note, while not a vegetarian (opposite in fact as I eat mostly meat), there are a number of vegetarians and vegans on the board here. What specifically is it that is causing you to feel it will be difficult to maintain a gluten-free life as a low or non meat-eater?

I agree the childhood diagnosis does probably mean that it is very likely going to be positive. It amazed me that the doctors would give such a serious diagnosis with so little information to my parents. My mom felt terrible when I told her all of the typical Celiac symptoms that I have dealt with for years and not having thought about going back to the doctors about it.

I think my concern about keeping the meat out of my diet is not having much left to eat. I could imagine if I did eat meat that it would be easier. I do dine out and and travel quite a bit for my job, so I am concerned about that adjustment in those situations. I don't plan on rushing into anything either way. I was just given the name of a highly recommended nutritionist who I plan to consult with before making further changes. I will also looked to connect with some of the vegetarians on the board to see how they have been managing.

Thanks for the support :)

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      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.
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      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. 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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. 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      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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