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Faith's Mommy

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Faith's Mommy Newbie

Hello everyone,

My name is Misty and I wanted to introduce myself. I was diagnosed with celiac disease at age 2, although my mother was told I would "outgrow" it. Well, they reintroduced gluten in my diet around age 5 and I seemed fine. I have been fine since then, I am now 29 years old. Now I learn that I still "have" celiac disease although I have NO symptoms, no complications, nothing.

I have a 12 year old daughter who seems symptom free but I also have a 21 month old who I just KNEW had Celiac's. She has a distended belly, she's EXTREMELY gasy and her stools are VERY strong smelling. I mentioned it to the doctor, she thought there was no reason to test her but agreed just to aleviate my fears (we have also lost a son to SIDS when he was 4 months old so my doctor is quite understanding). She ordered a Celiac Panel for Faith. 3 of the 4 results were negative but one came back with a "weak positive". She felt there was no need for worry because the other results were negative but I wasn't satisfied with that. I orderd the stool testing through Enterolab. I received the results this morning and she tested positive for gluten sensitivity.

Now I am reaching out for any help I can get. I'm struggling, depressed, sad for her and just very emotional right now. I am also 38.5 weeks pregnant so I'm feeling a full range of things right now. Worried about the baby, worried about SIDS, worried about Faith.... UGH, it's all so overwhelming.

I have ordered Danna Korn's book this morning and I'm looking for any other information I can find. I have no clue where to start. There are so many things that Faith just LOVES that it looks like she can't have anymore, i.e., ketchup, mustard, ice cream, Cheerios..... how do I explain to this 21 month old that she can't have those things anymore?

Thanks for listening.

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Guest jhmom

Hi Misty, welcome to the board!

I understand how you must feel right now it may seem overwhelming but it will get better. I am sure you are just happy to finally know what is wrong with your little one. After she is on a gluten-free diet she will not live in pain anymore, that is a very comforting thought! You mentioned you were diagnosed as a child are you currently gluten-free too?

She can still enjoy mustard and ketchup, Heinz and French's are both gluten-free. As far as the Cheerios, maybe you can find another gluten-free cereal for her that she will like. I like Rice Crunch-Ems.

Here are some links that have been very helpful to me:

Mainstream gluten-free Products

Support Groups

Open Original Shared Link

Open Original Shared Link

I hope this has helped you and hang in there :D

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Faith's Mommy Newbie

Thanks for the reply Stacie. I didn't know about Heinz and French's. See, I'm learning already.... :)

No I am not on a gluten-free diet. I haven't had any problems since age 5 and my mother always told me I outgrew it. I didn't realize that is supposedly not the case until I started suspected that Faith had it and I was researching. I just learned that I must still have it even though I have NO complications whatsoever. Strange that I can have this and be symptom free, especially for 25 years so far.

I will check out the sites you sent me. Thank you so much. I want to learn all I can and help my daughter adjust to this.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. There have been many posts on this subject on the forum, it is interesting to read of your experiences. Although I've not had TMJ, except from time to time have had a bit of mild tension in my jaw, I have had issues with my trigeminal nerve.  I read that sometimes a damaged 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.   Thank you again for your input.
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      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
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      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. 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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.
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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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