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Seriously?


SGWhiskers

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SGWhiskers Collaborator

I think I'm OCD compulsive about preventing these stupid attacks, but here is another one. I'm not able to go more than 3 weeks without poisoning myself. I stayed late at the hospital last night and am paying for it now. 5:45 rolled around, and I felt a wave of pain, nausea, confusion, teariness and fatigue. Someone had microwaved a TV dinner in the next room, and the patients dinner carts arrived. I couldn't just walk out with patients still needing my reports, so I hurried, and stayed until I could get the basics done. I just felt worse and worse.

The other possibility is that about 30 minutes earlier, I had an itchy jaw, hands that hadn't been immediately washed, and a nice suit that I didn't want to smear makeup on, so I went with my old standby of trying to scratch with the back of my forearm. I didn't remember that I had carried a washed tupperware that formerly held gluten earlier in the day with that arm.

Seriously, I'm feeling a good bit of rage about the sensitivity of this disease. I'm also starting to reconsider if I should be trying to get in the clinical trial.

Thanks for listening to the vent.

SGWhiskers

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ang1e0251 Contributor

I'm sorry that you are that sensitive. It seems like enough of a burden to have celiac disease without being so sensitive that touching that container made you ill. Sometimes it feels like we should just be in a bubble. I really don't have anything to help you but I wanted you to know I'm thinking of you.

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mattathayde Apprentice

honestly i think you have another sensitivity, being in the next room from a microwave meal or touching a container that was washed after holding gluten and then touching your face i dont see how you can be that sensitive with out getting sick no matter where you go just from touching stuff that people who have touched gluten touched.

do you get sick from walking around the grocery store?

do you get sick from walking by a fast food place?

im not trying to be rude with this at all but there is uber sensitivity and then there is looking for a cause that isnt there. i think its another sensitivity or extreme stress causing it, your mind can also make your self sick, if you really thing your going to get sick you will. my mother has told me about a patient she had when working in surgery that was convinced she wasnt going to survive surgery and she didnt, IIRC there was no reason why the patient should have died.

-matt

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SGWhiskers Collaborator

Angle,

Thanks for the sympathy. It's nice to have a virtual hug to ease away some of this crummy feeling. I don't think it was touching that container, but rather any residual crumbs that clung to my arm transferring to my jaw/lip area when I rubbed my face. If that was it, I must have swallowed a bit of it.

Matt,

I didn't take your post as rude. Maybe I should be looking at something else. Yes, I do get sick at the grocery store. I had to quit going a couple months ago after recurring attacks. Hubby is doing the shopping now. I have not had the occassion to walk past any fast food stores. I "seem" to have a problem with being around hot gluten like pizza or pie, but small things like coworkers pasta lunches don't bother me. Maybe your right ant it is something else.

4 years ago, I was tested for the big 8 food allergies, and basic environmental allergies. Unless my list of allergies has changed or grown, I don't think any of those could be doing it.

Now, with regards to looking for something that isn't there and making myself sick, you sound dangerously close to my pre Celiac diagnosis doctors who wrote off symptoms as all in my head. (she says teasingly). I just can't explain away happily typing away at a computer and then shifting to this glutened feeling while I typed without looking for a reason. Nothing I can think of changed, but maybe it is something I have not been looking at. Hormones? Other sensitivity? Other autoimmune disease? Allergies?

I had the horrid post gluten night terrors last night again. They are the only time I wake myself or my hubby up screaming and they tend to fade several days post gluten.

thanks for the vent/rant.

Anyone know if you have to eat gluten in that trial?

SGW

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mattathayde Apprentice
Angle,

Thanks for the sympathy. It's nice to have a virtual hug to ease away some of this crummy feeling. I don't think it was touching that container, but rather any residual crumbs that clung to my arm transferring to my jaw/lip area when I rubbed my face. If that was it, I must have swallowed a bit of it.

Matt,

I didn't take your post as rude. Maybe I should be looking at something else. Yes, I do get sick at the grocery store. I had to quit going a couple months ago after recurring attacks. Hubby is doing the shopping now. I have not had the occassion to walk past any fast food stores. I "seem" to have a problem with being around hot gluten like pizza or pie, but small things like coworkers pasta lunches don't bother me. Maybe your right ant it is something else.

4 years ago, I was tested for the big 8 food allergies, and basic environmental allergies. Unless my list of allergies has changed or grown, I don't think any of those could be doing it.

Now, with regards to looking for something that isn't there and making myself sick, you sound dangerously close to my pre Celiac diagnosis doctors who wrote off symptoms as all in my head. (she says teasingly). I just can't explain away happily typing away at a computer and then shifting to this glutened feeling while I typed without looking for a reason. Nothing I can think of changed, but maybe it is something I have not been looking at. Hormones? Other sensitivity? Other autoimmune disease? Allergies?

I had the horrid post gluten night terrors last night again. They are the only time I wake myself or my hubby up screaming and they tend to fade several days post gluten.

thanks for the vent/rant.

Anyone know if you have to eat gluten in that trial?

SGW

im not trying to poo poo your reactions or saying its in your head to brush it off (i didnt get that you were saying i am just want to explain my thoughts a bit better). i just dont see how you can be that sensitive in certain situations yet in other areas that should have as much contamination you are fine. i just really think there has to be something else (not necessarily that gluten isnt triggering it just that it is being magnified exponentially by something else).

if i was you i would try to find some one that does applied kinesiology and/or the bioset method of allergy/sensitivity testing. the guy i go to has been able to find a lot of stuff with me and my family that other docs would have never even agreed could cause issues (heck he was the one that DX'ed me with celiac).

maybe you have something that is really messing with your body that the trace gluten ends up being the straw that breaks the camels back

-matt

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ravenwoodglass Mentor

You also need to factor in that for some gluten is a delayed reaction. It may have not been what you were in contact with that night it may have been that you were unknowingly CC'd 3 or 4 days before. Not all of us have immediate reactions for some it takes a bit for the reaction to appear. That can make things even more confusing.

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YoloGx Rookie

I agree with Ravenwood. When CC'd it often takes me a day or two before my symptoms show up. Symptoms can vary as well.

It helps to take marshmallow root capsules or powder in water to soothe the intestines. Also helps to take bromelain/papain to allay the inflammatory response. ditto with enterically coated acidophilus. Dandelion or milk thistle caps also help by taking the stress off your already taxed liver....Plus drink lots of fluids, eat lots of greens.

For myself and many other super sensitives going on a more cave man or paleo diet seems to help a lot, i.e., avoid all grains for a while at least...Eat roots and squash instead for the carbs... Also helps to investigate other potential sensitivities/allergens. Plus avoid sugar.

Bea

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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 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. 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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 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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