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Teeth Grinding In Sleep
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So I'm a Senior in college, working on graduating, social life, academics, gluten free diet, etc. You know, the ush. But starting at the beginning of this year I began to grit and gnash my teeth in my sleep. As it got worse my dentist gave me a little device to wear but it still happens even when I'm awake to some smaller degree. Probably stress-related, I'll admit. I'm under a lot of pressure with all of my obligations and I haven't been able to upkeep the diet as well as I should, which leaves me sick a lot. But I don't always have nightmares associated with the waking up avec jaw ache. What I'm wondering is, does anyone have any idea how to stop it? Do I just need to de-stress? I have tried so hard with the diet that I'm kind of at a loss. I wish there was a kit I could send away for and some interesting journal type thing with sticker stars I could give myself for good behavior. This is getting ridiculous but what I mean is that I've never seen (and can't see) a dietician, this forum is literally my only form of support and I'm tired of bothering people and trying to look up every single minute question I have. So, without being able to really eliminate the stress, is there something I can do about the teeth grinding? I'd appreciate any help.

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I don't grind my teeth, but I do clench them because the dentist said that I have swollen ligaments around my teeth from doing it. Clenching teeth is actually a trigger for my trigeminal neuralgia, which is an extremely painful disorder involving the main nerve that serves your face. I'd love to hear if someone else has a response because I'm not sure what to do about it either. If you hear anything, please let me know.

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I don't have an answer to your problem.... but I have been grinding my teeth since high school and have been sleeping with the mouth guard since. I can feel myself grinding my teeth awake or asleep. It trys me crazy. I hate the mouth guard! Some nights I grind my teeth so bad in my sleep I wake up with blood on my teeth not to add the tooth aches and headaches associated from this problem. It sucks!

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I dont know about the teeth but as for the diet this fourm is all you need. I was sent to a dietician and she was worthless. She told me the same stuff I had found on this website/fourm. I wanted an actual grocery list...lol.. I found a good health food store in my area that has alot of gluten free stuff and copied some grocery lists off of this fourm and went to shopping!

The teeth thing probably is stress. My husband grinds his in his sleep. But I dont know.

stef.

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One doc told me that teeth grinding is associated with food allergies. I don't know if that's true or not, but it certainly could be in my case.

S

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Not sure what you can do about the teeth grinding, but I think you need to work on being diligent with the diet. Being sick will only add to your stress. The teeth grinding may go away if you are more strictly gluten-free.

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I do not grind my teeth either, yet I do clench them in my sleep and sometimes they will hurt for days from doing that. I know it is stress related.

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Bruxism is what it is called.

There is only really three treatments for this, a Dental device, Stress Management, and perhaps Bio feedback therapy.

Some anti depressants cause Bruxism, there may be an element of gastro oesophageal reflux involved, and some misalignments of the teeth may also impact on this.

Its a Sleep Disorder which is hard to treat.

Most of the over counter dental devices are inadequate, and you need to have a special one made.

I would also look at googling Biofeedback therapy in your area.

Good Luck !!!

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I was having what I thought were terrible sinus headaches. However, I did not have a sinus infection, and further investigation via x-rays of my sinuses were negative. My family doc sent me to my dentist, and he fitted me with a mouthguard for only $75.00, plus the cost of the visit. It fits all the way around my bottom teeth. If I don't wear the device every night, I have the headache the next day.

For people on a limited income, I wonder if one of the mouthguards used by football players would help. One of my students, a hockey player, described how he had to heat the soft plastic to mold his mouth guard. Just a thought- I have no idea how it would work. I assume you would get this product at a sporting goods store.

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I wasn't aware that I grind my teeth until I started getting terrible jaw pain. My dentist referred me to a facial pain center and I saw a doctor there. He told me that my grinding occurs when my body shifts from light to deep sleep, not because of stress.

After trying every medicine possible, we decided to get a device. It wasn't cheap, $1200 (including follow-up visits). But my insurance paid 90% of it so it turned out okay.

Then it only got a little better so we started physical therapy -sending heat waves into my jaw muscles with this weird machine. That helped a little

So I guess those are some of the treatments you can expect if you visit a doctor. However, I wasn't healed completely, but the pain did improve.

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Many years ago I thought I had a really bad tooth because I had so much pain, but the dentist said it was TMJ which is short for temporal mandibular joint disfunction, which I had never heard of, but is bandied about quite frequently now. It is the grinding or (in my case) clenching of teeth, mostly in the sleep, and it causes extreme pain in the jaw and can cause migraine headaches. At the time, thank HEAVEN, I had really good insurance and I saw a dental specialist who fitted me with a mouth guard (splint) and I wore it all the time until the condition was better and then just at night for years. Now I don't wear it at all. There were times when it would flare up and I would go back to the splint for a time just until the stressful time would pass. I know that now you can get the guards for less, but I wonder if they are as good if they are not fitted properly. They have to bring your jaw in-line and take the pressure off the mandibular joint to do any good, not just stop the grinding/clenching.

Barbara

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This may sound completely retardedbut it WORKED FOR ME!

I had TMJ a few years back (clenching my jaw very tightly, especcially while I was asleep,and most likely grinding my teeth)- I got to the point where I couldnt even open my mouth. I literally couldn't open it. I guess my muscles were tense/swollen in my jaw.. I'm not even sure but the doctor diagnosed it TMJ.

My doctor measured me for a mouth guard because it was supposed to help me while I slept, but I ended up never needing it.

All I did was this:

Every single night before I went to bed, I would very consciously tell myself to relax, I would imagine my jaw muscles relaxing and not being tense.. I concentrated really hard on it. I also would stop myself regularly during the day and if I thoughT I was tense, I would have to stop and try to relax myself. Well, it worked. It took a few weeks to get rid of the awful pain, but it went away!

As for nutritionists. I was sent to one one time, because I was obsessing over food too much (I was always feeling foggy brained and sick and couldnt lose weight and this led to me obsessing and feeling like I had some mental disorder- but I feel validated now because I was diagnosed with hypothyroidism, which explains the foggy brainedness, depression AND the inability to lose weight.. and now I'm doing the gluten-free thing- losing weight and thinking clearly!)

Anyway, the nutritionist was a complete fool. She literally sent me away because she was frustrated that I knew more than she did.

Go ahead and send a die-hard food-obsessing person to a nutritionist. I gurantee you that nutritionist will know less that the very educated food-obsessor. At least, in my case it was true.

Everything you need to know can be found online. You should always cross-reference the stuff you find on a forum and website with other reputable sites, though, as sometimes people are misinformed. Once you get the hang of doing the research it'll be so easy for you.. and, over time, you will automatically know what you can and cannot eat,

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Okay, so get this. I move to a smaller town outside DC and get asked to be a receptionist at my DD's new orthodontist's office. I just moved, I'm stressed, but we're outside DC and it's expensive, so I take a leap of faith and leave boxes unpacked and go for it. I work there for a year - and I'm so stressed. I complain of aches and pains and hair loss. I have headaches, 'm depressed & have anxiety that makes me want a rubber room. I can't remember anything as simple as what I ate for lunch, let alone a new appt. program- yet I'm a happy person who everyone loves to be around - and crash at night ... and can't sleep of course. I've been clenching my teeth. I've learned this to be bruxism. TMJ involves more gnashing and scraping. Both are not healthy. So before I move again, I ask him to look at me (embarrassed cause I have a mouthful of fillings and it looks like I never brushed or something). Doc is VERY cool, and insists he make me a night guard for free! (See, he loved me!) I asked him about over-the-counter football ones - and of course he says they're not helping the jawbone - just the teeth. It's important to protect the jaw alignment. Your jaw continually changes as you age. More on that later. It helps my headaches. I feel proactive and I'm grateful.

Now we're moving again and I'm still so tired. My thyroid's off, but after upped dose of Synthroid, I'm still tired and tell new doc. He does full iron panel and serum ferritin is so low he forwards me to GI doc for colonscopy to check for internal bleeding/cancer. I google anemia and I ask the GI for an endoscopy not knowing I'm getting my celiac dx, right? I'm still wearing my guard at night btw. Six months into the gluten-free diet, so much has changed regarding my health I can't believe it - one thing that changed was sleeping through the night again; and I can't remember the last time in 18 yrs or before pregnancy. This is, I believe, a result of Vit D Rx (50,000iu 1x/day for 8 days and 1x/month for yr) and getting sunshine. My other labs weren't as responsive. Prior to my diagnosis, I sometimes felt aching in my teeth - esp, and this may sound strange, if my nasal passages were clear and I'd breath in cold air. It radiated. I asked my dentist about it and he didn't know what to make of it. I had/have sensitive teeth. I've cracked them on hard candy. Why wouldn't a dentist tell a patient to get their calcium or Vit D checked if this happened repeatedly? It seems so obvious now.

Anyway, my need for the nightguard vanished. I don't clench anymore since on 100% strict gluten-free diet. And when I put my nightguard in after not wearing it for a long time, I can totally tell my jaw alignment HAS changed (on a side note: my DH's front teeth are spreading apart as he ages!). So I really should wear it anyway! (Ortho would kill me if he knew!) :rolleyes: Ask an orthodontist for a free consult and see what he/she has to say; do comparison shopping. Ask for payment plans; I believe it's worth it.

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Unwanted muscle clenching can come from Magnesium deficiency! I have terrible deficiency of magnesium. I didn't know that for years and by the time I was in my teens I had ground my lower molars wayyyyyy down. I don't remember doing it, but I must have ground my teeth in my sleep starting in childhood. The magnesium problem also caused me migraines. Magnesium helps you relax muscles once you've clenched them. If you don't have enough, you can have a lot of problems with cramps, etc. too.

I take about 500 mg a day (you can take half that and see results though). I think good old Magnesium Oxide works the best-- cheap and easy to find. GNC's brand is gluten free (but so are most others). I've heard you absorb Magnesium citrate better, but it's expensive, you have to take tons of pills, and I've never seen great results.

Give it a try for a couple of weeks, and let me know if you wake up with your jaw feeling better!

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For people on a limited income, I wonder if one of the mouthguards used by football players would help. One of my students, a hockey player, described how he had to heat the soft plastic to mold his mouth guard. Just a thought- I have no idea how it would work. I assume you would get this product at a sporting goods store.

I work at a dental office and I know one of our doctors has recommended these to patients who don't have the money for a fitted guard. It's better than having nothing and grinding your teeth away.

I grind so badly! Day and night. I have worn through 2 night guards so far, and I have terrible jaw/head aches from it, even when I do use the night guard. It sucks! One of the doctors I work for suggested muscle relaxers, but dentists won't prescribe it. It doesn't make the problem go away either...I just deal w/ it and *try* not to stress.

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So, without being able to really eliminate the stress, is there something I can do about the teeth grinding? I'd appreciate any help.

Hi Sinenox

I have learned a couple new tidbits of info from this thread. thanks for the question.

Just a couple extra bits of info. I went to a specialist for TMJ and for a year was fitted at diferent times as my teeth moved. but the greatest part was the physical thereapy where they used a Transcutaneous Electrical Nerve Stimulator. It relieved the pain so much that I said I wish I had one of these at home!!!!! That was all it took for them to give me one to take home. It was a very special tool for my pain relief. I used it on my jaw. It worked so well I decided to try it on my shoulders and back which hurt so bad at the time also.[ don,t know if that is recommended but it was great for me] After a couple years of gluten free and a lot of other changes I don't seem to need it.

Also the relaxing info I recieved in therapy was helpful as I was told to press my toungue tip up into the roof of my mouth and slack the jaw. this is helpful for me.

I don't know about the bruxism but the TMJ if memory serves me has to do with the padding in the jaw joint slipping. It causes a lot of pain. There is a surgury they can do but at the time I was being treated they said it could slip again. I decided not to have the surgury. I have not heard of anyone using natural thereapy and repaing it but if the info is out there I would be interested.

Spirit of the Home

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My sister is a grinder and I am a clencher.

I got yelled at by my dentist to stop (I had no idea) I have cracks going up all my teeth.

I ended up @ Walgreen's they have those mouth guards for cheap

good luck

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I work at a dental office with a general dentist and a TMJ specialist(temporal mandibular joint) I see this everyday. THere are several different options and treatments. I wouldn't exactly blame Celiac for the grinding as there are so many people that do it with out being a Celiac. Most people are unaware of it until they see their dentist complaining of headaches or tooth pain. Stress is a major factor and learning to cope with stress helps tremendously. There is a device called an NTI which doesn't allow your teeth to touch at all and rests only on your front teeth so you don't have to worry about a full night guard. These help but after awhile can also cause an open bite so need to check with your DDS. Also there is the common splint, bruxguard, nightguard, etc. (same things) This, if worn as prescribed will keep your teeth from hitting and protect them from grinding off your enamel or from causing fracture lines in your teeth. It takes time and a commitment to wearing it every night but the consept also is that it trains your brain to lessen the grinding. Hence, after awhile some people say they have stopped grinding. Keep in mind though, most people are sleeping when they grind or clench so how would they know if they've stopped or just simply lessened thefrequency of the grinding. THe headaches come from your muscles tensing up. Some get swollen joints etc. and a muscle relaxer can be prescribed by a TMJ specialist or general dentist if he/she sees a need for it. Alot of people clench their teeth and are not aware of iut until it is brought to their attention. This can eventually cause the same kind of damage as grinding. Keep an eye out when you are stressed or driving or at work to see if you clench your teeth. Ibuprofen works well as it is an anti inflammatory that will help with musles. The best remedy along with a guard is to do simple exercises to help relax your muscles. One common one is if you have a headache or jaw pain, place two fingers vertically between your top and bottom teeth and keep them there for two minutes. THis will help to relax those muscles. If need be a cheap sports guard at any store can help act as a nightguard but consulting with your dentist will help greatly in the end to aleviate teh true cause of the grinding/clenching. Celiac Disease also has a side effect in your mouth....due to malnutrition from not getting the vitamins, minerals, and nutrients, you can have enamel deficiencies, weakened enamel, and some children w/ the disorder can have visible signs of enamel deform. from malnuroushment etc. during the tooth bud, growing phase. This can travel on to the adult teeth as well since when the baby teeth are in, the adult teeth are behind those (although you can't see them yet) beginning to grow. There are several things you can do to help this situation. ACT mouthrinse contains flouride and helps to strengthen the enamel, you should consult your DDS as far as getting more flouride help. There are also prescription strength toothpastes that contain flouride as well. Flouride overdoses can cause enamel problems as well so make sure you speak with your DDS. I think the best way to look at it this...you're body will now be healthier than anyone else you know due to your new Gluten-free diet. Your healthy and have a great new challenge of finding new and exciting recipes, and making up new ones. THe only thing that makes you different from the others is you won't have the fattening junk food with everyone else. You can still eat the same meat (mostly) and vegetables, etc. that everyone else does there there isn't to much of a difference. Pretty much your seasonings and sauces will change. I found my first week (3 weeks ago)very depressing as I couldn't find anything at the store. I told myself it wasn't much different other than breads and sauces but I new I would probably be prolonging my life by eating healthier. I cheated and went to McDonalds last week (my first cheat) and ordered a #2 with fries and a coke. I wanted one more fast food meal and then I was done. I took acouple bites and realized it didn't taste the same. My body adn taste buds and gotten used to my new diet and I was unable to enjoy the fast food. Now I won't have the cravings and can continue to be happy. Think of it as a gift, not a handicap. The gluten-free food world has grown by @ 26% the past year and will continue so finding the newest foods coming out is alot of fun. Don't stress over it. If you have common everyday stress like everyone else....your grinding is probably from that, and in that same way...you are no different than anyone else!

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I clench too, and the muscles in my head and neck are not pleased by it. Oddly enough, when I;m getting adjusted regularly by the Chiropracter, I don't do it. I have a chiro who does soft tissue adjustment as well, she'll actually stick her finger in my mouth and push on the joint, which hurts UNBELIEVABLY but makes me stop clenching!

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I grind my teeth so horribly! I got my dentist to make me a splint and I love the thing, it took a while to get use to I would wake up with it in my hand when I first got it but now I can't fall asleep with out it in. Ever since I started wearing it consitantly I stopped having a sore jaw that would pop and get locked in place. After I had braces I stopped clenching my teeth I don't know if it was the braces that made it uncomfertable to clench my teeth or the realignment of my teeth but they helped. Anyway good luck and you really do need to find a way to protect your teeth before you grind them down and damage them even more.

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I clench my teeth at night more than grinding, but it has the same effect. I bought a 20$ mouth guard at target it has worked good so far

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I have TMJ, or I should say Had, as its hardly anything anymore. which is a bad condition with the muscles and joints in the jaw caused by grinding or clenching your teeth to much. you can get Lock Jaw (TMJ). I have had it once, and it sucks. for 2 weeks my jaw was locked, no opening or closing, just stayed in the same position couln't even move it one millimeater. this is cause by constant clenching when you shouldn't be. and using a mouth gaurd didn't help any for me, as it didn't stop the muscle use. it just stoped me from hurting my teeth. but I still clenched really hard on to the mouthgaurd, so the jaw was still a problem.

I also had RLS round the same time, after taking Calcium/magnisum supplements, it got better, both TMJ and RLS, after learning about how people with celiac seem to suffer with this, I had to learn more as to why this was happening. most people with celiac seem to lose calcium/megnisum more then anything. and this really affects your muscle growth and regeneration. if it gets bad enough, you will get muscle pain. an maybe Dxed with Fibro or something.

with RLS you have a feeling/need to hit/rub your legs, but this is not an affective way of treating this. it only makes worse over the years. example; you used to get it for 20 mins, will soon turn in to several hours of jumpy legs, even pain.

its the same with the Jaw muscle, you have this feeling/need to clench/grind. again, this feels good, but will only make it worse. and it will turn into TMJ

after taking a calcium/megnisum supplement, the "need" for me went away completely. now because I hardly ever get it, I hardly ever takemy supplements anymore. when i do have an "attack" because I haven't kept up with my C/M supplement, I go into the cabnit and take 2 or 3, and then it goes away after about 10/20 mins, so I don't even need much anymore. I try to risist going to sleep during the time I'm digesting the pills, once digested, I can sleep with out RLS and clenching. my musscles are relaxed, and this supplement helps me with stress aswell.

believe it or not, but it is your jaw that is doing the clenching, not your teeth.

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THe headaches come from your muscles tensing up. Some get swollen joints etc. and a muscle relaxer can be prescribed by a TMJ specialist or general dentist if he/she sees a need for it. Alot of people clench their teeth and are not aware of iut until it is brought to their attention. This can eventually cause the same kind of damage as grinding. Keep an eye out when you are stressed or driving or at work to see if you clench your teeth. Ibuprofen works well as it is an anti inflammatory that will help with musles. The best remedy along with a guard is to do simple exercises to help relax your muscles. One common one is if you have a headache or jaw pain, place two fingers vertically between your top and bottom teeth and keep them there for two minutes. THis will help to relax those muscles. If need be a cheap sports guard at any store can help act as a nightguard but consulting with your dentist will help greatly in the end to aleviate teh true cause of the grinding/clenching. Celiac Disease also has a side effect in your mouth....due to malnutrition from not getting the vitamins, minerals, and nutrients,

I do agree with the reason for the headaches, but I personally think a muscle relaxer or any over the counter drugs should be advoided if possible, as you are only putting more toxins into the body which will affect your bodys ability to absorb nutrients. and your over all health. becasue they are NOT cruing it, but only treating the symptoms. which you said your self Celiac's are knowen to have this becasue of melnutrition (vitimins/minerals and nutrients) this is what the body needs to live a LONG healthy life, not drugs.

Calcium/megnisum helped for me, but there are MANY vitimins and minerals that can cause TMJ not only these 2.. these were just the 2 I was missing in my diet becasue of the Celiac damage. we all have different levels of damage, and we all eat different diets.

I also agree with exercises and ways of coaping with stress, but again, this may only treat the symptoms, and not fixed the underlining reason for it. if things are happening in your life, like to much work, or a loss of someone close, that could be the cause of stress, and that can be delt with. but if you have no reason to be stressed, most of the time malnutrition can be the cause of stress. (actual stress to the body)

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Unwanted muscle clenching can come from Magnesium deficiency! .... I take about 500 mg a day (you can take half that and see results though).

This is definitely worth a try. If you take the magnesium in the evening, it may even help you sleep!

But please be careful about the amount! Some people (including me) are very sensitive to magnesium -- and anyone has their limit. Taking too much will generally give you the runs after a few days. (Just what a celiac needs, huh?)

If that happens, stop taking it until the runs subside, then try a smaller amount. Alternatively, you can start off with a small amount (say, 100-200 mg/day). If that stops your jaw clenching / tooth grinding, fine. If not, increase the amount a little per week until either your jaw relaxes or you do get the runs.

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for all of you TMJ sufferers out there, i just gotta say that i know the best doctor around! he has trained under the TMJ experts for the last 10 years, and focuses his practice specifically around TMJ disorders, and curing them. we have a massage therapist in the office, as well as a nutritionist. the doctor is so great, and he understands everything about the disorder. we get patients from both ends of the US!! it really is a complex problem, and there are so many factors involved in curing it. if you want to learn more about TMJ you can visit tmjtherapyutah.com or tmj.org both are really good sites! good luck to you all! there is hope! i've seen it, and i'm experiencing it!!!

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    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
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