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Newbie: Is It Candida Or Celiac Or Both? Help!


pebs

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pebs Newbie

hi,

i'm new here, but have been lurking and have seen such great information and support, i just had to "jump in" and ask my 30 million questions. :rolleyes:

here goes nothing...

i was diagnosed with IBS a year ago..(constipation, extreme bloating, gas, cramping, pain..VERY limited diet) and have GERDS/gastritis i'm on a number of meds (zelnorm, nexium, robinul, miralax) w/o much success or help of my condition or symptoms.

up to this point, i've been eating only about 5 different foods, and had to separate out carbs vs. proteins (tried the food combining thing) or else suffer EXTREME pain and bloating/gas.

last week, out of desperation, and a desire to expand my food choices i tried the IBS DIET. OUCHIE!! :blink: it was horrible! i was already constipated and it not only constipated me but caused me severe pain!

as a result of this, i was eating nothing, and slowly began introducing foods into my diet. *SIDE NOTE* i have already been tested for celiac spru via blood, and the result was negative. i found this site, by accident, and thought maybe for the heck of it, i'll try going gluten free (i'm actually only eating chopped chicken, lettuce and tofu right now...so technically, i'm doing BOTH the celiac diet and the candida diet)....and WOW! do i feel better! my skin looks better, i have more energy, eye strain is better etc.. is this a normal response to gluten free? or is it more indicative of a systemic issue w/ candida?

BUT...at this point, is where some new problems have cropped up. i also have MANY symtpoms of CANDIDA ALBICANS. :o (i took the spit test, and the questionairre and scored high as "yeast sensitive") based on the candida diet..it's NO YEAST, SUGAR etc.. i found a supplement called THREELAC for candida on the inernet. anybody tried this? apparently, it doesn't require a super restrictive diet. but still limited sugars. Any thoughts on this product?

i realize there is no real definitive test for candida, which makes things more difficult. my doctor isn't real thrilled about even running the blood/stool tests i wanted. (this is pending)

i'm planning on getting tested from enterolab, to test for celiac and gluten. and maybe even the yeast sensitivity (but not sure if that would be conclusive re: candida).

IF I HAVE BOTH CANDIDA AND CELIAC.....how do i modify my diet without being TOTALLY deprived? what's good for celiac, is NOT good for candida..and so on... anybody else find a way to successfully balance these two problems and live happy, healthy, foodie lives?

i'm so scared to eat anything with yeast, wheat, gluten, dairy, fruit, sugar..(i already have major sensitivities to: red meat, sugar i mean..it's got me so paranoid! trying to find a diet that overlaps for both disosrders! i'm sorry to go on and on and vent, but i can't find any forums or sites for candida, and i've read many w/ celiac also have candida. and everybody here seems so nice and helpful. i would greatly appreciate your experiences, input and suggestions.

again, sorry this was so long.

THANK YOU! :)

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KaitiUSA Enthusiast

I have both candida and celiac. I was diagnosed with celiac then I went gluten-free and I got alot better on the diet (like 95%) but still not 100% normal. I then was diagnosed with Candida but I am not on the candida diet I am taking Nystatin for that and that took care of everything and put me back at 100%. Celiac and candida have some very similar symptoms as well. I was diagnosed through a stool test and they were not even testing specifically for candida but it showed up. Some doctors are not crazy about it.

Your being off of gluten is having a positive effect on you. If you tested negative for celiac maybe you have gluten intolerance. Have you had food allergy and intolerance testing done?Maybe you should consider that. If your body is responding well I would listen to your body.

If you need any help just let me know :D

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pebs Newbie

hi kaiti!

thanks so much for your response! :)

i'm not sure about the celiac, i plan on getting tested by enterolab for the gluten sensitivity. from what i hear, the test for candida is tough to confirm candida overgrowth. my doctor's not crazy about doing it , either. :P i'm not sure what test is the most conclusive. i ordered a probiotic called ThreeLac, that i'm planning on starting to see if it helps me, before i do the Nyastin route...

i feel kinda stuck b/t the celiac and candida. i DO know that being gluten, wheat, dairy, sugar, "everything" free.. :blink: has made a BIG difference in how i feel. BUT...today i ate some chicken, tofu, romaine and brown rice..and "THE FOG" hit..i felt so gross...so tired, and just out of it! (no GI probs, tho) i'm not sure if that's a problem that points toward celiac (no gluten in brown rice..) or candida...boy, if i had a choice, i'd much rather be celiac than candida. there is a plethera of choices out there for gluten free foods..(sigh) it seems that anytime i eat a carb...of any kind...WHAMMO! i'm not sure if it was just b/c i combined the protein of the chicken w/ the brown rice..or if it was just the 'carb factor' of the rice.

i dunno...i'm so glad to hear that you're doing well, tho. GOOD FOR YOU! :D

i'm not sure how to test for food allergies. any suggestions?

thanks again for your response! :)

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jknnej Collaborator

Kati,

What is Nyastatin? I must ask my doc about this. I have candida problems, too.

I think I'll make an appt. tomorrow to ask about that...is it an anti-fungal?

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KaitiUSA Enthusiast

Yes Nystatin is an anti fungal. I do not follow the candida diet just the celiac one. Alot of doctors are not crazy about it . I was diagnosed through a stool sample(they weren't even looking for it). To be tested for allergies you look at York labs. If you didn't want to do that I know that doctors can do blood work to check for them.

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lambchop Newbie

Hi Pebs - I'm new to the list and today is the first day I've start posting - been lurking for some time trying to learn all I can. I've had Candida and Celiac as well, but the Candida is finally under control. It took me almost a year to get rid of it and about half my life savings - ha ha. My doctor put me on a rotation of medications (almost all herbal) - 6 weeks on this one, 6 weeks on that one and on. Very limited carbs and sugars (anythings with carbs had to be under 5 grams) - I'm afraid you cannot be on this special diet without feeling deprived. But the Candida diet worked well into the Celiac diet (although I didn't know it at the time that I had Celiac), but after 2 years of non stop pain and nausea, the treatment for Candida was making me feel better (because of the diet) - I had no carb foods like pasta or breads and stuck very strickly to the under 5 grams of carbs in packaged food - which limits your choices a great deal. After a year tests came back that all was clear for the Candida so the doctor said to start slowly bringing regular food back into my diet. Well of course bread was the first choice I made - albeit a bad choice - and whamo, sick, sick, sick. Went back to the doctor to see why the pain had returned and she ran the gluten and Celiac tests, but of course being on the gluten free diet for a year it came back negative. But all other symptoms pointed to Celiac and she said to proceed that I have Celiac - so back to the limited diet. Now I'm not allowed to take anitbiotics since this started the Candida and I'm very prone to it now. Now I'm just trying to learn what this new disease I have is and how to cope with it. The Candida seems like a walk in the park compared to the Celiac. My doctor was an intergrative doctor and specilized in Candida and intestinal problems - was a miracle I found her after being bounced from doctor to doctor and told it's all in my head and prescribed antisicotic medications. Very frustrating!!! Sorry for the long reply - I get winded sometimes.

Leslie

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mela14 Enthusiast

Hi Leslie,

I'm dealing with both Candida and celiac too! I can't seem to get a handle on it. how did you address the Candida? What herbs did you take?

I am at the end of my rope and reacting to everything. I started questioning the Nystatin that I was taking but it IS gluten-free. Maybe it is the corn starch in there as I tested positive for corn allergy or MAYBE it is just plain old Candida. I have been having some extra sugar lately....in the form of fruit. I'm sure that just flared me up! Today I can't get out of bed and feel totally debilitated. Did the Candida do that to you? I feel weak, achy muscles and totally fatigued. Of course this is all depressing me so much and anxiety sets in. Can you give me any information on how you felt and how you dealt with things? I dont' know what to do first.

thanks,

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lambchop Newbie

Yes, it was very dibilitating for me - I couldn't walk across a room without having to sit and rest. But I kept plugging away, which my doctor said was literally killing me. The Candida, if gone untreated, will get into your system (which I had systemic Candida) and will start destroying your organs. Mine had damaged my thyroid which is why I was so tired all the time and my liver so that it wasn't making a hormone used for energy. My hair was falling out and I had dry itchy patches of skin all over. I also had the DH on my chest really bad, but that was from the Celiac. I really didn't have a choice in how to handle the fatigue, no one to take care of me I had to just get up and go. Even though some days it felt like my head weighed 50 pounds when I tried to get it off the pillow. Did alot of crying, came home from work and would fall on the couch and not move until bed time, then roll off and go to bed only feel like I never went to bed the next morning.

I went from doctor to doctor only to be told I'm crazy and given antisycotic medication. As well as antibiotics, which only added to the probelm. This doctor is integrative medicine, she is an MD, but does alot with natural medications. If you can find one I would recommend you try them to help you, I wouldn't have the first clue where to start you since this is such a complex problem.

Now I wouldn't recommend anyone doing this without a doctor - I went through so many problems as the yeast was dying off. As the yeast dies off it releases toxins which poison your system, if to much dies all at one time you get majorly sick. I broke out in hives during one episode where to much got into my system. The doctor did it systematically so that my body was able to handle and eliminate the dead yeast. I went in every 2 weeks and she tweaked and molded the program to what was going on with my body - wonderful doctor - she was a God send for me.

The herbs is mile long list and at one time I was taking 36 pills a day along with powders mixed up in a shake type drink since I couldn't eat. I was also taking Ultra Flora and Lactobacillus pills to put good bacteria into my gut. This program took almost an entire year to clear my system of Candida, at times I would drive home from the doctor in tears because it was the most frustrating thing I ever had to do.

I wish you the best, as this is a long journey for you, but worth the trip to better health. If you can't find a doctor in your area let me know and maybe I can call mine and see if she knows of one in that area that specilizes like she does.

Leslie

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mela14 Enthusiast

Hi Leslie,

where is your dr located? I recently moved to NJ. It's weird that you mentioned hives. I am on the Nystatin about a week now....very small dose ....

After I took my pill last night I woke during the night really sick to my stomach and weak. I had horrible muscle pain. I couldn't sleep my head was pounding so much. I couldn't even go out today.

This evening while I was taking a hot shower I felt itching like crazy! I called out to my hubby to check my back.... he freaked when he saw the rash! I think the heat from the shower made it spread more because my entire back had it and it went around my torso and up my neck.. My legs seemed ok although my ankles were itching and red. I thought it had to be my sweater. I don't know what is going on.

Then I thought I must be allergic to something inthe Nystatin so I called the manufacturer and he faxed me the ingredients. NO gluten but it does have corn starch. Now I'm thinking I'm allergic to corn. I tested positive for it with my blood tests but never thought much of it. I also tested positive for so many other foods.

I don't know what to think anymore. So many things have the same sypmtoms.

Last week I saw a homepath. she put me on a remedy and told me to take certian vitamins. Of course I got sick fromt he vitamins..they were gluten-free but they irritated my gut! I am so sensitive now. I think the vit were also free of so many other allergens like soy, corn, yeast, etc.....

The only thing that I could think of is that I also took an ativan...and about 2 weeks ago it did the same freaky thing to me. Weak, dizzy, racing heart, muscle pain, extreme fatigue............. so maybe it's something in the pill. Not usre anymore. One thing I know for sure........ I feel horrible and can't keep up anymore. I feel exactly the way you described it. Like I am going to collapse.

I am going to call the homepath and I also have an appt with Columbia Presbyterian on tues. Maybe they can shed some light for me.

thanks,

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jknnej Collaborator

Kati,

Do you have any side effects from the Nystatin?

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KaitiUSA Enthusiast

Nope no side effects for me at all....I am on the liquid Nystatin. He said I will be on it for a while to get rid of the candida but thats fine the effects it has is well worth it. I take 3 teaspoons a day. There are other forms of Nystatin to get though but my doctor said being a celiac he thought this would absorb better. If it has something in it you can't tolerate though then you should get another form.

If Nystatin has bad side effects there are 3 other things I think that they can prescribe to treat candida.

Good luck :D

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lambchop Newbie

Mel - my doctor is in Denton, Texas - a bit of drive for you in NJ - ha ha. When I broke out in hives I was trying a herbal medication (on my own) that was supposed to kill the Candida. I thought the doctors plan was taking to long (you know the instant society we live in). I broke out on my stomach first, then around my back, up my neck to my face, it did this in a matter of hours while I was at work. It was scary. When I went back she told me I had killed off to much Candida for my body to deal with so it caused the hives. She said it was a way for my body to scream for help, that it couldn't handle what was going on inside.

Another thing that I noticed, and that my doctor had asked me, is if I had flakes in my BM. She described it as looking like the pieces at the bottom of a can of peanuts. I had a ton of those, my Candida was so bad that it was coming out in the BM as well as going through my system. Do you have that?

I hope you find a homeopathic doctor that knows how to deal with this. It's hard enough dealing with the Celiac alone then to add another major issue like Candida.

Leslie

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mela14 Enthusiast

HI Leslie,

I broke out with hives just as you described on my torso and up my neck the other day. It came out the same day after I woke during the night sick to my stomach from being on the Nystatin. I was probably killing off too much yeast too.

I spoke with my new homeopath yesterday, which was very nice of her to talk with me on the phone for half hour on a sunday. She told me to take the pure Nystatin powder once I get it from the pharmacy but to start with a lower dosage. She also said to take Diflucan once or twice a week to aid in killing the yeast and advised me to take probiotics..something I haven't been doing. O focurse she said to go to the store and find a probiotic that is free of allergens (soy, corn, yeast, etc)...all the things that trouble me. We discussed diet..........absolutely no sugars...natural or otherwise and no starches. That means stopping the gluten free rice bread...stopping the quinoa hot cereal for breakfast. She said that although it is gluten free the starch is feeding the yeast! She actually said to avoid ALL grains. So, what do I eat for breakfast???????.........bacon is ok provided it is sugar free. I tried some this morning ...let's see what happens. I was getting reactions form the gluten-free toast and quinoa cereal.......so I knew I couldn't eat it anymore. I also had plantains the other day and immediatley it caused intestinal (and vag) burning!

I am still fatigued and feeling achy. I haven't been out in days........but have to stay the course with getting the yeast under control

Tomorrow is my consult at Columbia but in light of all this Candida stuff I don't know how helpful it will be. I am seeing my homepath at the end of the week. She is nice enough but quite clearly told me I am the most difficult to treat patient that she has had. Although she gives advise there is no clear cut plan to get rid of the yeast. We have to try different things. She said she is going to give me a homepthatic remedy for the yeast. I'll try anything at this point.

Thanks for your input......you are right, Denton TX is a bit of a ride for me.

Just curious did your dr have you on a regimented plan for the Candida or did you wing it? Also, are you now as strict with your diet as you were when you were doing the treatment? This has to get better...the pain is horrible and the fatigue is delibitating.

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lambchop Newbie

My doctor did have a very strict regime for the Candida program as far as the medication went. She knew exactly what herb and what mineral to give and when according to how my body was reacting. That's why she had me come in every two weeks to monitor any reactions I was having and tweak the program. She did blood tests out the ying yang to keep the most current data on what was going on in front of her. But your doctor is right about no sugar and no carbs - that's what mine had me on. Since I wasn't eating anyways she put me on a shake mixture in the mornings. I had a scoop of Biopure Protein (for protein), a scoop of L-Glutamine (to help seal up the stomach since my food was leaking out), and a scoop of Metafiber (for fiber). I mixed all this into about 2 cups of Carb Countdown milk (low carb milk) and put a tablespoon of International Coffee sugarfree Mocha in for flavor. It wasn't to bad and seem to settle on the stomach pretty good. I drank this for breakfeast for a year before the Candida was cleared up and I could start regular food. Well, I thought I could eat regular food until diagnosis with the Celiac - ha ha. All of those ingredients you can buy on line at health food sites. I don't think any of that would hurt you, but you should ask what your doctor thinks of it before trying it.

Never head of the Nystatin before - I never was on that one. What is that one for and is it herbal?

I know you feel like your against a brick wall and banging your head against it. I went home from the doctor so many times just bawling my eyes out because she could not give me a diffient date as to when the pain would end. It's different from person to person, but oh so frustrating. But after about 4 to 6 months I finally realized the pain was subsiding - not sure if the pain was from Candida or the Celiac, I'm begining to believe it was Celiac because I still have the pain from time to time. But my energy was slow to return. I was not allowed to exercise at all and just rest. Even though I was sick like that I would try to force myself to do stuff, thinking I'm just out of shape. But all I was doing was slowly killing myself because my body couldn't keep up. Once the Candida was cleared I was cleared to walk on very low speed on the treadmill with my arms crossed to build up the core muscles. It's been since December since I've been clear and I'm still very weak, but the energy is returning - just the muscle strength is slow to return, if it ever will. But the Celiac also makes the muscles weak and I've started getting numbness and tingling in the extremities. But I can't afford the doctor and medication right now - I'm in nursing school now and my hours have been cut in half at work. So if I can just make it through the next two years then I'll be going back to get back to 100%. Unless I just totally break down I'll just monitor myself and watch what I eat. A little scary considering what I've been through, but not much choice in the matter.

Leslie

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KaitiUSA Enthusiast

Leslie-Nystatin is an antifungal prescription drug, it is not herbal. It is one of the main medications doctors use to treat candida.

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cdford Contributor

No one has yet mentioned diflucan. My daughter and I both had real problems with yeast when we were first diagnosed. Mine got better pretty quickly because I do not tend to eat many sweets or simple carbohydrates anyway, but Jenn's did not. She required several rounds of diflucan. She would get better and go right back to the junk (like most eleven year olds). They finally put her on an extended round of the medication and I got her to stick a little better to the diet. Once she got rid of it completely and decided that going gluten-free was the right thing to do, she has not had another problem. It is not normal to have to do multiple rounds of the diflucan, but that is what it took.

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christicrete Rookie

HI ALL,

IM NEW TO THIS SITE, FIRST POST TODAY, PEBS, I HAVE MANY OF YOUR SAME SYMPTOMS, IF I EAT ANYTHING WITH BREAD IN IT (PIZZA, CRACKERS, CAKE, COOKIES) I LITERALLY FEEL LIKE SOMEONE PULLED A RIP CORD FOR AN INFLATEABLE RAFT IN MY STOMACH. I HAVE PROBLEMS WITH POTATOES, CORN AND WHITE RICE THAT I HAVE NOTICED AND EVEN SUGAR SOMETIMES. I TESTED NEGATIVE FOR THE CELIAC BLOOD TEST (NOT SURE WHICH ONE, WILL LOOK INTO IT). I GO FROM DIARIAH TO CONSTIPATION AND PRAISE THE LORD WHEN I HAVE A "NORMAL" BOWEL MOVEMENT. I HAVE BEEN DIAGNOISED WITH ULCERATIVE PROCTITIS SO REALLY NO BOWEL MOVEMENT IS "NORMAL". UNFORTUNATELY I HAVE NO PROBLEM WITH WEIGHT LOSS IN FACT I COULD STAND TO LOOSE LOTS AND CANT. THE AWFUL THING IS IS I LOVE ALL THE FOODS I CANT EAT AND WHEN I TRY TO SUBSTITUE THINGS I GET HEARTBURN OR OTHER REACTIONS I CANT STAND. I AM WONDERING IF I CAN EVER EAT ANYTHING THAT TASTES GOOD AGAIN. AND THEN MY FAMILY LOVES ALL THE STUFF I CANT EAT AND ITS ALWAY AROUND. I NEED TO MAKE AN APPOINTMENT WITH MY DOCTOR BUT HAVE BEEN PUTTING IT OFF CUZ I KNOW HES GONNA WANT TO SCOPE ME AGAIN, GOD I HATE THAT. SORRY TO BE SUCH A DOWNER BUT IT IS SO NICE TO RUN INTO SOMEONE LIKE ME. NO BODY AROUND MY PLACE UNDERSTANDS HOW IT MAKES ME FEEL AND HOW HARD IT IS TO AVOID THIS STUFF EVEN THO IT MAKES ME FEEL SO MISERABLE. SORRY SO LONG AND HONESTLY I AM NOT SUCH A WHINER, JUST FEELING HOPELESS AND HAD TO TURN HERE TO KNOW THAT IM NOT. THANKS EVERYONE FOR LETTING ME VENT

CHRISTI :unsure:

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  • 2 weeks later...
piglet Newbie

I'm a newcomer to this site too. I'm quite suprise by how many people suffer from both coeliac and candida. I've been gluten-free for a few years now, despite having tested negative for coeilac. What many doctors fail to point out when you're having the tests done is that, firstly if you have been gluten-free for more than a few months the test will come back negative, and secondly even if you haven't been gluten-free the test is only 50-80% sensitive, meaning 20-50% coeliacs will test negative on it. I had quite a fallout with my doctor as I knew both of these at the time of being tested (but couldn't bear the thought of having to go through the rigmarole of eating bread before being tested). The test, unsuprisingly, came back negative, and he insisted that there was nothing wrong with me and that it was all in my head. Um, right, I really get a kick of being violently ill every time I eat pasta. I have even done a strict exclusion diet as he then recommended and, suprise suprise, I was intolerant to gluten-containing foods (also lactose, soya, salmon). I was then fine for a few years, until about 6 months ago when I went through a rough patch and started binge-eating chocolate. I ended up with severe thrush, and now am unable to get rid of it. I have had 9 attacks in the last 6 months, and have been on various courses of antifungals. Some of them work, but then after a few weeks it just comes back again. The anti-candida diet seemed to do very little for it, although it improved my eczema and mental status, and my doctor now thinks that this is all in my head too (I think I have the most unsymnpathetic doc in the world!). I almost began believing him until I realised that there are people that suffer from both. I find it quite amusing that I qualify as a vet in 4 months time and my doctor still uses language like 'little bugs' with me and thinks when I try and use jargon with him it's because I read it on the net! (One more comedy thing he came out with was that ringworm isn't zoonotic (from animals) and that it isn't contagious between people, you just catch it from yourself. I wonder if he'd like to explain why all vets either have or have had it!!).

Nystatin is an antifungal which is more commonly used for resistant species of candida, and not often given to people as a primary course. It is unrelated to most of the other antifungals that are usually prescribed (the imidazoles and triazoles) so can be useful if these classes of drugs seem unsuccessful.

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KaitiUSA Enthusiast

Nystatin got rid of mine and cleared up symptoms as well so I'm not complaining :lol:

I asked a few doctor about it and they said it is what is commonly used to treat candida.

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piglet Newbie

That's quite interesting - in the UK nystatin is raraly used for that. Do you follow a pecial candida diet? The one I tried didn't help greatly but then I've heard lots of different opinions as to exactly what you're supposed to eat and what not to. Some of them say potatoes are fine, others say now way. Same goes for fruit. Some of them say to just look at the GI of foods, but others say all veggies are fine yet quite a few veggies have a really high GI. Very confusing!

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KaitiUSA Enthusiast

I followed no candida diet...doctor just told me to take the Nystatin to clear it up and it did.

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    • 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.
    • 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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