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Omg...i Might Be On To Something


Rachel--24

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Guest Mtndog
its weird I have been doing alot of thinking and I know that some people cut gluten out and get better and thats it. But it seems like so many people cut it out and get sicker - whether discovering more food allergies or other sensitivities. I know they say the gluten allergy is so strong it can mask the other symptoms. I guess I'm not about to go out and eat gluten I know how I react to it but I wonder if there is some component in it that is actually good for the system that we overlook when focusing on how bad it is. I don't know if this makes sense. I have not though it out much. I read this thing I wrote the other day when I first cut it out and my doctor and i thought I had finally founf the answer. Now its 2 -3 years later and I am sicker. I just feel like nothing seems to make any sense anymore.

miamia

I have pretty much had the same experience. I used to eat tons of peanut butter and soy, no problem. Now they both affect me much worse than I ever noticed before. I don't think that the gluten was masking the symptoms, although it's possible. One of the theories behind autoimmune disorders is that our immune systems are "bored" because we have developed so many medications that "cure" diseases that normally our immune systems woulkd have had to fight off. For example, antibacterial soap. I don't know if it's true but it kind of makes sense to me.

If that is true, anad your body had taken on gluten as its enemy, then you eliminated it, maybe your immune system would lokk for another thing to attack. This is only hypothetical scintificness on my part, but I had a similar experience to you where I felt great when I first cut out gluten. Then I realized I couldn't tolerate any legumes- especially soy. Dairy seems to be OK in minute amounts but in the beginning it was out of the question.

I remember viola posting that these new sensitivities go away but that it takes a long, long time.

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Matilda Enthusiast

I'm starting to think we're all being poisoned by something.

Maybe it's gluten that sets it all off, maybe it's something else. I started getting symptoms maybe 3 years ago. My dog started getting symptoms at exactly the same time! She started getting skin problems and so did I. For a long time I thought I'd got scabies that I'd caught from her getting "mange", which turned out to be allergic dermatitis, after umpteen failed treatments for mange. The only thing that's made her better is cyclosporin, which is a big-time immunosuppressant. Then she got GI prblems, and so did I. Then she got joint problems, and I started hobbling around like an old lady.

I've emigrated and my dad looks after her now. I've been telling him for ages it's food. She's just had blood allergy tests - sure enouh she's allergic to beef, chicken, lamb, rice, corn, dairy, soy and wheat to name just a few.

Maybe celiac disease is just being recognised more commonly and that's why the incidence has increased. Maybe something new is triggering it. Only one breed of dogs is supposed to get celiac disease, not labs like my Tilly. I can't get my head around the idea that me and my dog have exactly the same medical problems just by chance!

The discussion of multiple food intolerances prompted me to write about this. I don't think it's eating the same thing all the time that causes the problem, but I do think that something is triggering intolerance of things that we eat regularly. I'm doubtful that this is celiac disease as it was known in the past. Something is making it more widespread and virulent.

Matilda

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Rachel--24 Collaborator

I think all of the "poisons" that are added into our foods play a big part. Too many additives, preservatives...stuff that makes the food able to sit on a shelf for a very long time and still be "edible". I don't think its a good thing at all. <_<

Its all chemicals and we've been feeding ourselves these toxins for years. I think we're more vulnerable when we've already got a gluten intolerance causing damage. The chemicals would put even more stress on the immune system.

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miamia Rookie
I think all of the "poisons" that are added into our foods play a big part. Too many additives, preservatives...stuff that makes the food able to sit on a shelf for a very long time and still be "edible". I don't think its a good thing at all. <_<

Its all chemicals and we've been feeding ourselves these toxins for years. I think we're more vulnerable when we've already got a gluten intolerance causing damage. The chemicals would put even more stress on the immune system.

I agree with the over use of food additives and preservitives. But I feel like everyhing I eat is the worng thing. I mean I definitly can tell the difference when I am having an allerigc reaction to something and when I am just reacting bad to something but eating which I have always loved is such a painful thing for me to do. I hate becaus eI LOVE food!!!! I have never been a dieter or anything like that I have always maintaned a healthy balanced diet. the only thing I had a problem with was dairy. Now I can't have anything it seems like.

Miamia

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Green12 Enthusiast
I agree with the over use of food additives and preservitives. But I feel like everyhing I eat is the worng thing. I mean I definitly can tell the difference when I am having an allerigc reaction to something and when I am just reacting bad to something but eating which I have always loved is such a painful thing for me to do. I hate becaus eI LOVE food!!!! I have never been a dieter or anything like that I have always maintaned a healthy balanced diet. the only thing I had a problem with was dairy. Now I can't have anything it seems like.

Miamia

I understand your frustrations miamia. Even though I have seemed to make some progress with my angioedema, I still have multiple food sensitivites to deal with- and I can't just eat anything. And when I really think about it, it sucks. It makes me sad. It makes me angry! The more I cut out it seems the less and less I have to choose from, and then it seems I react to more. I would be over the moon if I could just eat beans, or rice bread, of all things :lol:

I feel there is something happening where there has been a total breakdown of the digestive process. What and how, I don't exactly know.

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Green12 Enthusiast
Something is making it more widespread and virulent.

Matilda

I agree Matilda.

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dlp252 Apprentice
Hi all!

Has anyone heard from Donna? I am VERY worried about her.

Off to read what I have missed, yes, i'm going back :huh:...very scary!

Quick drive-by. I'm okay. Had a root canal yesterday. I'm on antibiotics which are making me queasy and dizzy, but otherwise okay. Saw the Endodontist on Tuesday, and he fit me in for yesterday for the root canal so I didn't have to be in pain for too much longer. He said I have TMJ and that's why I've been in so much pain since my regular dental visit last Wednesday, so he kept the procedure to a minimum yesterday and gave me some suggestions on how to minimize that pain. The root canal was a piece of cake. He did the only other one I had done 10 years ago and never felt a thing on either time. I did swallow some of the topical stuff, and that made me queasy on top of the queasiness from the antibiotics. So no wonder I was near out of my mind with pain though...TMJ AND a cracked tooth which probably went haywire from me clenching my teeth from the pain of the TMJ. It got so bad I couldn't chew at all on Tuesday/Wednesday...messed up my meat/veggies only thing though...I haven't been itching much at all until yesterday (just a little) though, so hopefully all is well.

I haven't had time today to catch up on the posts, so Julie I'll be joining you on going back...hopefully sometime before I leave today. I won't be posting for the next 4 days though. My computer at home died...just won't boot up correctly, so can't post from there. I'll be off work tomorrow and for the 3 day weekend, so don't get too worried if you don't hear from me.

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Rachel--24 Collaborator

Good to hear from you Donna. :)

Hopefully you wont have to go through anything like that again. Next time you can tell the dentist you have TMJ and maybe they can shorten the time you have to kepp your mouth open...so as not to aggravate it. Too bad about having to go off your diet...at least you know it helped with the itching though and you can get back on it when this is over with.

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dlp252 Apprentice
Donna, Have you tried rinsing with epson salt(don't laugh-know yawl think all I talk about is epson salt) but it works. I had teeth, gum problems before I figured out the celiac problem and it works or did for me.

Bought two small containers this week, lol. Haven't used them yet though.

Donna...I somehow missed your post earlier. I'm sorry you're not feeling too good. :(

What happened? Was it food related or do you have the flu or something? I caught a cold so am feeling pretty yucky myself...it sounds like you were having a really bad time though. I was hoping you were ok....hadnt seen any posts from you. Hope it passes quickly. :)

Hope you're feeling better by now! I don't think it was food related...I think I took too much Vicodin on an empty stomach. I took two Vidodin before bed, then 4 hours later took 2 more. One wasn't even touching the pain, two seemed to dull it, but I think taking that many so close together probably wasn't good on an empty stomach.

Will post more tomorrow......

...just wanted to say Donna I am so sorry you have been in so much pain. Hang in there :) I'll check in tomorrow to see how you are doing.

Better. :) I was home for work on Monday because I was so sick, then went to work on Tuesday, but left early for the Endodontist appointment, then stayed home yesterday because they were able to schedule the root canal, but at 10:00 a.m....right in the middle of my day. I felt fine yesterday but just couldn't get on my computer...grrr...think I have to get a new one or have mine rebuilt. :(

I hope you feel better too Donna.

Thanks!

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Rachel--24 Collaborator
Bought two small containers this week, lol. Haven't used them yet though.

Hope you're feeling better by now! I don't think it was food related...I think I took too much Vicodin on an empty stomach. I took two Vidodin before bed, then 4 hours later took 2 more. One wasn't even touching the pain, two seemed to dull it, but I think taking that many so close together probably wasn't good on an empty stomach.

I've still got my cold...I thought yesterday would be the worst day and then I'd start feeling better but I'm home sick today. :(

Its my second day I've missed since going back to work in Sept....I'm bummed out that I blew it. I was proud of only missing one full day. :(

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dlp252 Apprentice
I'm sorry you have been feeling so ill, how are you today? Have you tried gargling with sea salt?

Didn't think of that, but honestly couldn't stand up for even 5 minutes, lol. It finally passed about midday, and was able to eat some corn tortillas which seemed to settle my stomach...that was it, just the one day fortuantely.

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Green12 Enthusiast
Quick drive-by. I'm okay. Had a root canal yesterday. I'm on antibiotics which are making me queasy and dizzy, but otherwise okay. Saw the Endodontist on Tuesday, and he fit me in for yesterday for the root canal so I didn't have to be in pain for too much longer. He said I have TMJ and that's why I've been in so much pain since my regular dental visit last Wednesday, so he kept the procedure to a minimum yesterday and gave me some suggestions on how to minimize that pain. The root canal was a piece of cake. He did the only other one I had done 10 years ago and never felt a thing on either time. I did swallow some of the topical stuff, and that made me queasy on top of the queasiness from the antibiotics. So no wonder I was near out of my mind with pain though...TMJ AND a cracked tooth which probably went haywire from me clenching my teeth from the pain of the TMJ. It got so bad I couldn't chew at all on Tuesday/Wednesday...messed up my meat/veggies only thing though...I haven't been itching much at all until yesterday (just a little) though, so hopefully all is well.

I haven't had time today to catch up on the posts, so Julie I'll be joining you on going back...hopefully sometime before I leave today. I won't be posting for the next 4 days though. My computer at home died...just won't boot up correctly, so can't post from there. I'll be off work tomorrow and for the 3 day weekend, so don't get too worried if you don't hear from me.

Hi Donna!!

So glad to hear from you :) Will the root canal help with the TMJ pain? I'm not sure I even know what a root canal is to be honest with you :lol: You can get right back onto your diet, great news that it has releived some of the itching.

Yes, I did go back in the thread yesterday, funny thing though I never reterned :lol: I have the worst brain fog, not sure why but have been a complete space cadet and can't seem to follow through on anything or put many thoughts together to post. I know there are lots of things I need to reply to, but I'm too scatter brained :blink:

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dlp252 Apprentice
Good to hear from you Donna. :)

Hopefully you wont have to go through anything like that again. Next time you can tell the dentist you have TMJ and maybe they can shorten the time you have to kepp your mouth open...so as not to aggravate it. Too bad about having to go off your diet...at least you know it helped with the itching though and you can get back on it when this is over with.

I'm back on the diet today....I just couldn't chew anything and I couldn't find anything "meat" that didn't involve chewing, lol. I even went to Whole Foods to get baby food...the only "meat" I could find was chicken with sweet potatoes...everything else had wheat or barley in it. Bought eggs, but just couldn't eat them...the thought of it was making me queasy...why do "soft" foods have to be carbohydrates, lol. I was trying to think of a way to pulverize the meat, but couldn't quite bring myself to experiment. :lol:

I've still got my cold...I thought yesterday would be the worst day and then I'd start feeling better but I'm home sick today. :(

Its my second day I've missed since going back to work in Sept....I'm bummed out that I blew it. I was proud of only missing one full day. :(

I hate missing work for sickness, lol. :lol: I was just starting to get my PTO time built up again after having used it all up last year from being so darned sick...if I take time off I want it to be for fun! :lol: Sorry you're still sick!

Hi Donna!!

So glad to hear from you :) Will the root canal help with the TMJ pain? I'm not sure I even know what a root canal is to be honest with you :lol: You can get right back onto your diet, great news that it has releived some of the itching.

Yes, I did go back in the thread yesterday, funny thing though I never reterned :lol: I have the worst brain fog, not sure why but have been a complete space cadet and can't seem to follow through on anything or put many thoughts together to post. I know there are lots of things I need to reply to, but I'm too scatter brained :blink:

HI!!! The root canal won't help with the TMJ pain, but it did take care of the eating problem I was having, lol. Somehow the cracked tooth (which has been cracked for several months and which never hurt until Tuesday), started to really hurt. I couldn't even chew on the other side of my mouth because the lower tooth would hit the upper cracked tooth. A root canal is where they clean out the dead or dying root tissue located in one of the root canals in the tooth. If they don't clean it out it will eventually spread to surrounding tissue. It supposedly kills the nerve endings there, so pain goes away.

I definitely think I made the cracked tooth worse because of the TMJ thing though. I must have ground my teeth while sleeping. I had to constantly relax my jaw while awake because I found myself clenching the jaw because of the pain...I can imagine that happened while I was sleeping too.

After nearly 7 days of pain, I can say that it is WONDERFUL to NOT be in pain. The only thing I'm still fighting is the nausea from the antibiotics. At least I'm able to eat! Yay, don't take away my eating, lol. :lol:

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VydorScope Proficient

YAY Got an answer... All Kitchen Aid and Whirlpool filters are gluten-free as per thier reps. :)

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rinne Apprentice

Donna, I am so glad you are feeling a little better.

Rinne, What is the salt regiman that you're on? Sorry if you already posted it, I've had a pretty foggy week! If you have posted it, just point me to it.

Patti, it is a treatment used for Lyme disease. I am looking at Lyme disease as a possible underlying cause for what I am beginning to see as a systemic breakdown over a period of many years. I have had a rash, I have lived in a remote location in Colorado where two good friends have been diagnosed with RMSF. I have many symptoms besides the gastro issues including: weak bladder, arthritic pain, migraines, sensation of a tingling band of pressure on the back of my head, seeing shadows from the corners of my eyes, heart palpitations, wobbly walk, clumsiness - falling, brain fog, nausea, tingling burning pain in shoulder and I will probably remember more after posting this. My thinking was to use it as a diagnostic tool because if you have Lyme disease you will herx, a herx is when you feel sick as the bug die off hits your system.

I really don't know how it works for people with high blood pressure. There is lots of information at Lyme Strategies, if you want I can find a link for you.

Has anyone seen Celia around? I've been wondering about the storm.

One thing I found out about our filter is that it is gluten free but it doesn't filter floride which can cause problems for people. I am going to see about getting the filter that does.

Rachel, you are presidential in showing up for work feeling as you do much of the time. :) I am glad you stayed home to take care of yourself, it is good to do that too. :P

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rinne Apprentice

Open Original Shared Link

Insects, arachnids, and ticks carry many different types of bacteria, viruses, nematodes, and nematomorphs. We have found many strange things, which we have tried to explain. We must say we are not medical professionals. We were just desperate people looking to get better. We have lost all faith in the medical profession. We were tired of having doors closed in our faces. We researched, contemplated, and came up with an idea. Research the late, great Linus Pauling. He took at least 18,000 mg of vitamin C every day. We tried to read everything we could about Lyme disease. Supposedly cows somehow beat Lyme disease. We considered, why cows,why not other animals? Cows love salt. Humans consume less salt today than they ever have. Early Americans consumed approximately 20 grams a day. The consumption has been drastically decreasing with each decade. Could it be that the decrease in salt consumption has allowed these new illness, such as Lyme, Chronic Fatique Syndrome,Fibromyalgia, Alzheimer's Disease, and Gulf War Syndrome to flourish.
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miamia Rookie
I understand your frustrations miamia. Even though I have seemed to make some progress with my angioedema, I still have multiple food sensitivites to deal with- and I can't just eat anything. And when I really think about it, it sucks. It makes me sad. It makes me angry! The more I cut out it seems the less and less I have to choose from, and then it seems I react to more. I would be over the moon if I could just eat beans, or rice bread, of all things :lol:

I feel there is something happening where there has been a total breakdown of the digestive process. What and how, I don't exactly know.

Julie-

I am happy you posted this- I ma not happy you feel bad but just that I can totally relate to what you say- I feel like there has been a total breakdown in my body and I can't kick start it!!! I mean everytime I cut something out I end up able to eat less an unable to reintroduce wahtever it is I cut out.

I feel like its great that we all have learned so puch about preservitives and histamines and everything else. But I feel like I am living in a bubble and with everything I learn I just bury myself further and further in it - I know I am disciplined and can cut anything out if it will help but I also know I don't want to live like this . I know how I lived before I got sick and although I may never return to that I know that I am not going in the right direction now. there just has to be some other approach I just need to figure out what it is.

miamia

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lindalee Enthusiast
We got rain here last night too and we are on the west coast.

Miamia,

I understand your questioning. Question away, that's how we find out about new things. From everything I've read the gluten masks other intolerances.

Rinne,

That's great that the vit c/salt mix is working so well for you! :D

I have my own question. You all know we went through enterolab and only had the active intolerance (except Micah having malabsorption). My question is why the other intolerances or allergies start? Is it because of damage to the intestines? None of us had ttg elevated, isn't that an indicator of damage to the intestines too. I know malabsorption is. I had a lot of vegetables that were just over the line into low allergy (which I'm still eating). I'm just curious as to why there would be so many. I had the IgG/IgE test.

I really need to scramble some money together to get the kids tested. They still have bumps on their faces that I was told was eczema. It has never looked like the rash I get and have (still hasn't gone away but doesn't bother me). Seth's looked more like I would picture eczema.

Another question. We are told to rotate our foods for more optimal health. How does one do that if their diet is so restricted? Is it really that eating the same foods over and over that get us or that the system is already compromised? My mom thinks we've got the intolerances because of eating so much gluten and soy. I'm mildly allergic to many things which I don't eat frequently. I eat rice pretty much every day and have no problems with it. The high's on my list, asparagus and kidney beans, I didn't eat frequently. The dairy, mid point low I hadn't been eating much for 3 years, goat milk I'd never had but once which I think was after the allergy testing but before the results. I get sneezing and stuffy nose with dairy when I eat it, I don't think I'm quite so bad with the raw cheese. My mom thinks I'm limiting the children's diets too much. How are you going to get calcium? I told her calcium fortified orange juice has as much calcium as milk, plus we have vitamins.

Any thoughts from you wise people out there?

Andrea, I thought the only OJ we could have was the regular-premium. I had quit buying the fortified.

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AndreaB Contributor
Andrea, I thought the only OJ we could have was the regular-premium. I had quit buying the fortified.

I don't know about that one. We haven't had any problems with it. Do you know why the fortified would be bad?

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Green12 Enthusiast
I don't know about that one. We haven't had any problems with it. Do you know why the fortified would be bad?

I don't eiter Andrea, does the fortified have gluten? I am pretty sure there is msg, or corn by product, as a vitamin carrier.

mimia, we are not going to give up!! We will find answers and get well :)

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lindalee Enthusiast
I don't know about that one. We haven't had any problems with it. Do you know why the fortified would be bad?

Andrea, I am pretty sure that I read it here. I have been careful not to get the fortified and only get the premium. I compared ingredients and the premium has only a couple of ingredients and the other has more additives if I'm not mistaken.

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christine 25 Newbie
I'm back on the diet today....I just couldn't chew anything and I couldn't find anything "meat" that didn't involve chewing, lol. I even went to Whole Foods to get baby food...the only "meat" I could find was chicken with sweet potatoes...everything else had wheat or barley in it. Bought eggs, but just couldn't eat them...the thought of it was making me queasy...why do "soft" foods have to be carbohydrates, lol. I was trying to think of a way to pulverize the meat, but couldn't quite bring myself to experiment. :lol:

I hate missing work for sickness, lol. :lol: I was just starting to get my PTO time built up again after having used it all up last year from being so darned sick...if I take time off I want it to be for fun! :lol: Sorry you're still sick!

HI!!! The root canal won't help with the TMJ pain, but it did take care of the eating problem I was having, lol. Somehow the cracked tooth (which has been cracked for several months and which never hurt until Tuesday), started to really hurt. I couldn't even chew on the other side of my mouth because the lower tooth would hit the upper cracked tooth. A root canal is where they clean out the dead or dying root tissue located in one of the root canals in the tooth. If they don't clean it out it will eventually spread to surrounding tissue. It supposedly kills the nerve endings there, so pain goes away.

I definitely think I made the cracked tooth worse because of the TMJ thing though. I must have ground my teeth while sleeping. I had to constantly relax my jaw while awake because I found myself clenching the jaw because of the pain...I can imagine that happened while I was sleeping too.

After nearly 7 days of pain, I can say that it is WONDERFUL to NOT be in pain. The only thing I'm still fighting is the nausea from the antibiotics. At least I'm able to eat! Yay, don't take away my eating, lol. :lol:

Hi Donna.

I have TMJ too, I dont know if its from clenching in the night, I just have a tight jaw somtimes. But anyway.

I had a root canal too a month ago, I felt queasy after swallowing some of the dental material, and the

lidocaine, but that went away after 2 days, during the time where I had the temporary filling

waiting for the crown, I got really sick and had a really bitter taste in my mouth, the temp was made out of Acrylic, which I am really sensitive to. It was in my mouth and leaching out and making me sick, I even got a cold sore on my mouth and ive only had one in my whole life.

When I got the porceline tooth and he took out that acrylic crap, its been smooth sailing.

Bad news is that he said I need two more root canals in my top back teeth, the are huge cavaties there, and the one on the right side is sensitive to hot and cold. that one tooth cost 2,000 dollars cash, so im going to have to wait a little bit to save up 4,000 for the other two.

dental insurance doesnt kick in till jan. assuming i still have the hospital job then, i call off sick like everyother week.

But im ok, ive gotten used to the pain and feeling like crap all the time.

As long as it not too excrutiating and im not too tired that I cant move or something.

Im not going to let stupid food and chemicals rule my life.

Actaully ive noticed that Im feeling better the more different foods I eat.

The two main killers for me were smoking, and alcohol.

I quit smoking 3 years ago, I was never really a heavy smoker, socially or when I would drink.

If you are worried about chemiclas in food or being organic etc, smoking is the stupidist thing you can do...thats a known pioson, its so much worse for you than MSG or augriox or sulfites in food. I think people can never heal, if they continue to smoke.

Also alcohol made me really dehydrated and feel so bad.

anything, and drug or such that is Drying, makes me feel worse I have noticed.

The more my sinuses drip the better.

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miamia Rookie
I don't eiter Andrea, does the fortified have gluten? I am pretty sure there is msg, or corn by product, as a vitamin carrier.

mimia, we are not going to give up!! We will find answers and get well :)

julie-

I love how upbeat you are. I found out I am lacking in certain amino acids. i am going to start taking 2 different supplements- taurine and histidine. The taurine one makes alot of sense- of course I've already gone into heavy research mode on both.

My new plan - and I know it will leave me uncomfortable is to instead of cutting things out focus on putting things in. I feel like I need to reaclimate my body to different foods in order for it to stop being so sensitive because it seems like the more I cut out the more hypersensitve my body becames. I hope this makes sense.

Miamia

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Green12 Enthusiast
julie-

I love how upbeat you are. I found out I am lacking in certain amino acids. i am going to start taking 2 different supplements- taurine and histidine. The taurine one makes alot of sense- of course I've already gone into heavy research mode on both.

My new plan - and I know it will leave me uncomfortable is to instead of cutting things out focus on putting things in. I feel like I need to reaclimate my body to different foods in order for it to stop being so sensitive because it seems like the more I cut out the more hypersensitve my body becames. I hope this makes sense.

Miamia

It makes perfect sense miamia. I had to do this too a couple years ago. I was down to only eating meat and vegetables and I had become so sensitive to any starches. I made myself start eating starches again, in small amounts (i.e 1/2 cup servings), like red skinned potatoes, sweet potatoes, brown rice, legumes, etc, and after about three months everything normalized for me. I was then able to eat these things no problem. Good luck with it!!

I discovered the last few day that I can't handle refined sugar in any capacity. I always knew this, but it was so much more obvious since I had cut it out completely for almost a month and then reintroduced it when I ate Pamela's chocolate chip cookies and brownies. My system got completely out of whack on every level. It just magnified all of my symptoms too.

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AndreaB Contributor

Miamia,

That does make sense. Would I be correct that this is more the case of if you have a leaky gut or something like that? I hadn't eaten meat for 7 years when we picked it back up and, thankfully, didn't have any reactions. Beans on the other hand, that I don't have much, don't go so well with me.

I'm all for cutting out the bad things. :P I've started eating enjoy life chocolate chips again and maybe should reconsider since that's caffeine. I've heard alot of bad stuff about caffeine over the years (but can't remember it :lol: ). I've have also heard recently that evaporated cane juice isn't much better than refined sugar.

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    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • 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.
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