Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Elimination Diet Gone Wrong?


misdiagnosed6yrs

Recommended Posts

confusedks Enthusiast
If they found a ton of environmental allergies, then it wasn't a complete waste of time IMO. I hope you are treating them and reducing your exposure to them It can make a huge difference in how you feel.

I am not taking anything for my environmental allergies because I believe they are caused by something and I am treating the ROOT, not just the symptoms. I am not saying this is the case for everyone, but it is for me. Also, my allergist just wanted me to take more pharmaceuticals/meds and pump me with steroids, which is reallllllly bad for me because I have Lyme Disease and steroids are bad for that. It actually contributed to the complete downfall of my health.

Also, I tried many meds for allergies and they didn't do anything for me. I think it was pointless for ME.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 84
  • Created
  • Last Reply
ravenwoodglass Mentor
I am not taking anything for my environmental allergies because I believe they are caused by something and I am treating the ROOT, not just the symptoms. I am not saying this is the case for everyone, but it is for me. Also, my allergist just wanted me to take more pharmaceuticals/meds and pump me with steroids, which is reallllllly bad for me because I have Lyme Disease and steroids are bad for that. It actually contributed to the complete downfall of my health.

Also, I tried many meds for allergies and they didn't do anything for me. I think it was pointless for ME.

I tested positive for every allergin tested for except beech trees preceliac diagnosis. This was what clued my allergist that he was dealing with a celiac. Within just a few months strictly gluten free the only things I am allergic to now is a few perfumes, cat spit and my yew bushes when they bloom. That is it. I have not even had to refill my script for my inhalor or my Singulair since I was finally diagnosed and went gluten free. My allergist said that my celiac was putting my immune system in hyperdrive, the reason it was attacking everything including my own body. In my case the root cause was the celiac. Hopefully once your Lyme and Celiac are under control you will have the same positive result.

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice

I have dropped the fresh fruit for the last 3 days and feel better. <_< who'da thunk?

This is my new meal plan.

break fast

rice cakes with peanut butter

or cooked fruit

Lunch

applesauce

veggies, fruit

dinner

Rice, chicken, some veggies, garlic, (stir fry)

I only have a few more days (6) on this diet and although I messed up, I feel better today and yesterday.

This is what I have NOT touched during these past 8 days...

eggs, dairy, soy, peanut (until yesterday),

I will continue to leave these out for another week.

I am trying to avoid certain fruits and veggies.

I haven't had any coffee. :(

I feel so hungry cause I am afraid to eat and all I eat is rice. Which some people say is bad.

I am going to buy some more food. What are safe veggies and fruits?

I messed up last time and wasted almost $100.

Can I have the following:

Onions, mushrooms, peppers

bananas, grapes, berries,

garlic, oil (anything specific)

Thanks for your support.

Happy New Year

Bobbi

Link to comment
Share on other sites
ravenwoodglass Mentor
I have dropped the fresh fruit for the last 3 days and feel better. <_< who'da thunk?

This is my new meal plan.

break fast

rice cakes with peanut butter

or cooked fruit

Lunch

applesauce

veggies, fruit

dinner

Rice, chicken, some veggies, garlic, (stir fry)

I only have a few more days (6) on this diet and although I messed up, I feel better today and yesterday.

This is what I have NOT touched during these past 8 days...

eggs, dairy, soy, peanut (until yesterday),

I will continue to leave these out for another week.

I am trying to avoid certain fruits and veggies.

I haven't had any coffee. :(

I feel so hungry cause I am afraid to eat and all I eat is rice. Which some people say is bad.

I am going to buy some more food. What are safe veggies and fruits?

I messed up last time and wasted almost $100.

Can I have the following:

Onions, mushrooms, peppers

bananas, grapes, berries,

garlic, oil (anything specific)

Thanks for your support.

Happy New Year

Bobbi

You may want to add in cream of buckwheat cereal in the morning or as an afternoon snack. It is quite soothing and easy to digest. It is also high in carbs and protein both of which will help to fill you up.

If your feeling well you could try adding in some bananas, perhaps some peaches and pears and the berries. Sweet potatoes or yams would also be a real good choice. They are also easy to digest and the fiber in them will help regulate the digestive tract whether you suffer from C or D. I would hold off for a bit on the onions, peppers, and garlic. For an oil one of the best ones to go with is olive.

Glad things are improving a bit for you. You do also need to add a protein to your lunch meal, that may be one reason why your hungrey so much. Add a piece of fish or some chicken, hummus dip or a couple of crackers with a nut butter. Make sure also that if you use a soy sauce in your stir frys that it is actually Tamari or something else. Most soy sauces contain wheat.

Link to comment
Share on other sites
BSinCO Newbie
As far as the foods I was eating, I took two elimination diet lists and combined them together. Is that bad? So thats where I found safflower oil, avacados, and almonds.

Everyone has great ideas. I just don't know what to do. Maybe I'll call a dietician or an allergenist cause I am going to end up starving myself. I can't NOT eat though. Doctors aren't open for a few days and getting an appointment will take a while. My gassy stomach is getting worse each day. It was fine for a while then bam. stomach aches. The worst part is when I am waking up. I have no idea why. Cause the food is settling maybe?

So what kinds of foods should I eat until I get an appointment?

Thanks.

I guessed on the tyme and sage.. etc.. I figured cause it was fresh and natural and organic. I guess I am wrong. Now I haver to throw that stuff away. Anyone hungry?

Bobbi

Hi Bobbi,

I also have problems with raw fruit and veggies. I have been told that both of them are harder to digest, especially when your stomach is just trying to recover. I think it is different for everyone, so you will have to find out what works best for you. I think it makes the most sense to do a true elimination diet where you only have a few "safe" foods and keep it at that until you feel better. Then add things back in slowly. An holistic nutritionist may be a place to start if you can find one.

BS

Link to comment
Share on other sites
tarnalberry Community Regular

I would skip the onions and peppers, and go with the buckwheat and sweet potatoes. I'd add the onions back in before the peppers, but peppers can make *anyone* gassy in large quantities.

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice
You may want to add in cream of buckwheat cereal in the morning or as an afternoon snack. It is quite soothing and easy to digest. It is also high in carbs and protein both of which will help to fill you up.

If your feeling well you could try adding in some bananas, perhaps some peaches and pears and the berries. Sweet potatoes or yams would also be a real good choice. They are also easy to digest and the fiber in them will help regulate the digestive tract whether you suffer from C or D. I would hold off for a bit on the onions, peppers, and garlic. For an oil one of the best ones to go with is olive.

Glad things are improving a bit for you. You do also need to add a protein to your lunch meal, that may be one reason why your hungrey so much. Add a piece of fish or some chicken, hummus dip or a couple of crackers with a nut butter. Make sure also that if you use a soy sauce in your stir frys that it is actually Tamari or something else. Most soy sauces contain wheat.

Good thing I'm not too bad cause I have been messing up. Example: I use garlic and safflower oil in my stir fry. No soy sauce. I have the wheat free but I cut it out for now. I used the last of my peppers, onions and mushrooms tonight. I feel ok. Then again, I'm so new at all of this, I am just waiting for more symptoms to come. (sorry, trying to stay positive)

I forgot to add that I am eating sweet potatoes. I sprayed the alum foil with pam olive oil spray (bad?) and bake them for 15-20 minutes and maybe put salt or not.. depends. I also have has a salad. butter greens with cukes, carrots, oil and vinegar (gluten-free) Not to big on salads though. Unless they have a fruit and a nut to kick it up a bit. MMmm and cottage cheese. haha Which those three things for elimination purposes have been left out.

So no garlic huh? I said tonight, "If I couldn't have garlic, I would be lost". :)

Of course I don't mean that.

My Dad said he can't eat bananas, they give him gas. Is that weird? I stopped eating a banana a day three days ago. I was eating them every morning. But he made me nervous.

Thanks for all the info. keep it coming :D

Bobbi

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

bobbi, I know it seems like you're "messing up", but honestly, you're doing a great job. you're going with the flow, making adjustments, and taking it all in stride. keep up the good work!

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice
bobbi, I know it seems like you're "messing up", but honestly, you're doing a great job. you're going with the flow, making adjustments, and taking it all in stride. keep up the good work!

Thank you and you should know that I appreciate your support and all the info you have given me.

Bobbi

Link to comment
Share on other sites
Fiddle-Faddle Community Regular

You might want to make sure that the rice cakes you are eating are not made by Quaker--people on this board have complained for months about wheat cross-contamination in Quaker Rice Cakes. For that matter, you might want to read the label of your rice cakes. Sometimes wheat starch is added to the strangest things (like rice cakes)! :rolleyes:

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice
You might want to make sure that the rice cakes you are eating are not made by Quaker--people on this board have complained for months about wheat cross-contamination in Quaker Rice Cakes. For that matter, you might want to read the label of your rice cakes. Sometimes wheat starch is added to the strangest things (like rice cakes)! :rolleyes:

I noticed that with quaker. Never touch the stuff. I use KOYO. whole grain brown rice and sea salt.

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice

OK How about this.

(sorry if I am getting annoying)

New Diet

Cooked fruits to include bananas, peaches, berries (any ok?) pears. (are there any I can add that are "safe"?)

Cream of buckwheat cereal (If I can find it)

Rice cakes with peanut butter. (natures place, peanuts and salt)

Chicken (free range)

Rice, sweet potatoes,

Veggies to include artichokes, spinach.. what else can I have? So many veggies seem to cause problems.

Seasoning or flavorings

salt, cinnamon, olive oil (if necessary), honey

Can I have avacados?

I also did a search for elimination diets and they all say that most veggies are ok. None of them say I can have chicken but I don't eat anything else. They say fish is ok. They also say most fruits which include the ones people warn me about. I have looked at 5 different sites. Does anyone know of a good one I can go to?

Thanks

Bobbi

Link to comment
Share on other sites
ravenwoodglass Mentor
OK How about this.

(sorry if I am getting annoying)

New Diet

Cooked fruits to include bananas, peaches, berries (any ok?) pears. (are there any I can add that are "safe"?)

Cream of buckwheat cereal (If I can find it)

Rice cakes with peanut butter. (natures place, peanuts and salt)

Chicken (free range)

Rice, sweet potatoes,

Veggies to include artichokes, spinach.. what else can I have? So many veggies seem to cause problems.

Seasoning or flavorings

salt, cinnamon, olive oil (if necessary), honey

Can I have avacados?

I also did a search for elimination diets and they all say that most veggies are ok. None of them say I can have chicken but I don't eat anything else. They say fish is ok. They also say most fruits which include the ones people warn me about. I have looked at 5 different sites. Does anyone know of a good one I can go to?

Thanks

Bobbi

That seems much more balanced nutritionally. The best place to go if you want guidance for an elimination diet is an allergist. He will basically drop you down to 5 nonreactive foods and have you add in from there. I think one of the most important things with any elimination diet is consistency. You don't want to jump all over the place adding something one day and leaving it out the next. That can be confusing if you have intolerances because they tend to be delayed reactions.

If you can stick with just what you are doing and eating today for at least a week or so. Then add more foods back in. If you have stopped reacting.

If you can't find buckwheat locally Pocono brand is the one I see the most and they should have a web site. Just a note of interest, in Oriental medicine when folks have digestive illlness the first remedies they use are sweet potatoes and buckwheat. They both will regulate the digestive tract and help to soothe it. They have been using them for thousands of years, the first mention written of was in 625AD.

Link to comment
Share on other sites
Fiddle-Faddle Community Regular

That looks much better! I'd leave berries out entirely at this point--they are not easy for an embattled tummy. Peaches (and all "stone" fruits--fruits with large stone pits) are great if you are constipated, but not necessarily good for diarrhea. Applesauce (without any added sugar) might be good, though (remember the BRA diet). Chicken can be poached, baked, or broiled (not fried or sauteed at this point). I think chicken broth would be good, too. SOmeone correct me if I'm wrong on that one. If you use packaged chicken broth (the cardboard boxes, better than canned), make sure you read the label as some have wheat. You can make your own chicken broth with the poaching liquid as described above.

Link to comment
Share on other sites
ehrin Explorer

Hey Bobbi -

I assume you're going to A Market to get a bunch of your stuff??

I'm not sure if you are aware or not, but there is a new Health Food Store that opened on 28 Bypass - I think it's called Natural Market? Anyhow, I haven't been, but my friend scoped it out and they have nice gluten-free section and they aren't as pricey as A Market!

Just a thought to save some cash...

Link to comment
Share on other sites
sneezydiva Apprentice
I am not taking anything for my environmental allergies because I believe they are caused by something and I am treating the ROOT, not just the symptoms. I am not saying this is the case for everyone, but it is for me. Also, my allergist just wanted me to take more pharmaceuticals/meds and pump me with steroids, which is reallllllly bad for me because I have Lyme Disease and steroids are bad for that. It actually contributed to the complete downfall of my health.

Also, I tried many meds for allergies and they didn't do anything for me. I think it was pointless for ME.

I totally agree with getting to the root of the problem. And like ravenwoodglass said, the celiac/lyme may be the root cause. You don't have take any meds if you don't want to, but at the same time you don't need to suffer any more than you have to. Your allergist should've talked to you about environmental control measures you can take, not just drugs. Reducing your exposure to your allergens is the most important thing you can do to reduce your symptoms.

If you tested positive for dustmite allergies (which most people with allergies do), you should have dustmite covers on your mattress and pillows. You should be washing your sheets in hot water weekly, and ideally would have a HEPA air cleaner in your bedroom. You would not believe the difference you will feel. For me, it doesn't eliminate my allergies, but it helps enough to keep me functioning.

Ideally, if you have a ton of pollen allergies, a whole house air cleaner attached to your heating and cooling system works wonders. At the very least, using high efficiency air filters in your unit will help clean the air you breathe. And of course, you or a loved one needs to vaccum regularly, again preferably with a HEPA vaccum cleaner.

There are other, more expensive things you can do like tear up the carpets, buy new leather furniture etc... If you surf the internet, you will find lots of suggestions, but I have found just doing what I listed above works well for the most part, and is within our means. It's the difference between being slightly stuffy and full blown congested and miserable. Even before discovering my wheat/gluten issues, it made a noticable difference. Every little bit that helps you feel better is a good thing.

Also, if you have lots of congestion, nasal rinses with a saline solution are a very natural way to clear the sinuses. I use the NeilMed squeeze bottle, but there are many other types, including neti pots

*EDIT* I forgot to mention that for dustmites, the humidity level of your home/bedroom should be 45% or less. Most digital thermometers have a humidity monitor. This will also reduce mold in your home if you have mold allergies. Also, all the dust/pollen measures will help if you have pets and have tested positve to their dander, especially the HEPA air cleaner.

Link to comment
Share on other sites
sneezydiva Apprentice
I tested positive for every allergin tested for except beech trees preceliac diagnosis. This was what clued my allergist that he was dealing with a celiac. Within just a few months strictly gluten free the only things I am allergic to now is a few perfumes, cat spit and my yew bushes when they bloom. That is it. I have not even had to refill my script for my inhalor or my Singulair since I was finally diagnosed and went gluten free. My allergist said that my celiac was putting my immune system in hyperdrive, the reason it was attacking everything including my own body. In my case the root cause was the celiac. Hopefully once your Lyme and Celiac are under control you will have the same positive result.

I find this so facinating. I too was "allergic" to everything. In my lastest round of allergy testing in December, after attempting since July to be gluten free, only a handful of things remained positive--my biggest triggers in previous testing. I'm still taking allergy meds, but I feel so much better than I have in the past. I'm hopeful the longer I'm on the diet, I'll feel so great tyhat I can stop taking the meds.

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice

Ok. So I have been eating brown rice, sweet potatoes, baked in water only; chicken. Plain lightly salted rice cakes, Banana, applesauce and once a cooked pear. (which made my stomach go nuts!!!) I feel like I'm at the point where I can't eat anything at all.

I tried to add butter to my rice. It was canola margarine. My stomach didnt care for that. Just to be sure, thats what it was, I did it a few times. Yeah, not good.

I cooked two pears for breakfast and put some honey on them. aahhh hahaha NEVER! That was so not a good idea.

My stomach has been terrible these last few days and I can't eat ANYTHING without getting a stomach ache. This morning I had a few bites of applesauce, then a few hours later a banana. Then for lunch I had baked chicken. in water. free range chicken. Last night I made some baked sweet potatoes in the oven... maybe I ate too much, but stomach ache. I don't want a stomach ache anymore. I am seriously getting annoyed now, cause it seems the less I eat, meaning the more I cut out, the worse my symptoms are.

I am going to die if I don't get enough nutrition. well, arent we all. I don't have insurance so seeing a dietician is out of the question. Besides, they probably know nothing about celiac disease and will be a waste of money any ways.

I just don't know what to do. I would give up if it didnt hurt so bad.

Bobbi

Link to comment
Share on other sites
tarnalberry Community Regular

assuming you've made sure that it isn't a blood sugar issue (on an elimination diet like this, it can be hard to keep blood sugar intact, and hypoglycemic symptoms can include stomach aches), at this point, I would start looking for doctors who will work with you - and I wouldn't hold only with mainstream western medicine (but wouldn't leave it out either). if you can't find a common denominator in food, it may well be somewhere else.

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice
assuming you've made sure that it isn't a blood sugar issue (on an elimination diet like this, it can be hard to keep blood sugar intact, and hypoglycemic symptoms can include stomach aches),

I don't understand. How would I know if my blood sugar is fine. Boy do I feel dumb right now. Should I also say that I am so tired. I assumed its from the lack of work (I havent worked in a week. in between jobs) I also have been having a back ache and terrible headaches that I used to get when I smoked cigarettes. These may not be relevant but hey, its all on the table now.

Oh and I have been drinking plenty of water so I shouldn't be dehydrated. (shouldn't)

What do you mean? Are you suggesting that it may not be food that's making me sick?

Link to comment
Share on other sites
tarnalberry Community Regular
I don't understand. How would I know if my blood sugar is fine. Boy do I feel dumb right now. Should I also say that I am so tired. I assumed its from the lack of work (I havent worked in a week. in between jobs) I also have been having a back ache and terrible headaches that I used to get when I smoked cigarettes. These may not be relevant but hey, its all on the table now.

Oh and I have been drinking plenty of water so I shouldn't be dehydrated. (shouldn't)

What do you mean? Are you suggesting that it may not be food that's making me sick?

You can tell if it's a blood sugar issue if you find that you feel better after eating, for about half an hour, and then feel worse. You can also use blood sugar monitors to test regularly to find out if you have a sudden drop or spike, which can definitely cause stomach aches and headaches, at the least.

I am suggesting, given all that you've been trying, that it isn't a specific food (or small set of foods) that's making you sick. It could still be a GI issue related to food (for those who really have IBS, food plays a role in causing the symptoms, even if it's not the direct cause; and yeah, I know it's way over-diagnosed, or for those with other GI issues, fat is a problem), but it seems, based on what you've been describing, that it's not quite as simple as a handful of other food allergies/intolerances.

Though, as I type that, one other thing comes to mind - if you entirely eliminate fruit, you could separate out a fructose intolerance. True, clinically-diagnosable fructose intolerance is fairly uncommon (as opposed to an intolerance where you can't handle much, but can handle a small amount), but you describe a connection with the fruit, and cooking may not break down all of it.

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice

I don't mind making a doctors appointment if I have some solid info to present. With that said, should I go to be checked for low blood sugar? What other things should/can be checked so I can do them all at once?

Thanks

Bobbi

Link to comment
Share on other sites
tarnalberry Community Regular
I don't mind making a doctors appointment if I have some solid info to present. With that said, should I go to be checked for low blood sugar? What other things should/can be checked so I can do them all at once?

Thanks

Bobbi

Meh, I'm sure others will comment much the same from what I've read in other threads, but I've found blood sugar testing in the doctors office to be not much help for reactive hypoglycemia. Even my doctor, who saw my results after a standard screening during a physical, said that it can be tough to diagnose clinically and that symptoms were important indicators as well.

I'm not sure what else, but I'm sure others may be able to help. (I know we tend to be very focused on food intolerances around here, but we need to consider other options.)

The fruit thing continues to stick in my head. Have you tried a day or two without any fruit? (And getting a little bit of exercise for the fatigue? :) )

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice
You can tell if it's a blood sugar issue if you find that you feel better after eating, for about half an hour, and then feel worse. You can also use blood sugar monitors to test regularly to find out if you have a sudden drop or spike, which can definitely cause stomach aches and headaches, at the least.

Thats diabetes isn't it? I have a family history of diabetes.

:(

Link to comment
Share on other sites
misdiagnosed6yrs Apprentice
The fruit thing continues to stick in my head. Have you tried a day or two without any fruit? (And getting a little bit of exercise for the fatigue? :) )

I have been walking my dogs which I almost never do. I want to go to the gym but I feel like it wouldn't be a good idea cause of the lack of nutrition.

I haven't gone without fruit. haha That would leave chicken, brown rice and sweet potatoes. Those havent given me any problems. Cept for the chicken I ate today but I was already feeling horrible. And the sweet pots I ate last night but I also over did it. :huh: and ate a ton. oops.

I should add that salt is on some of these things.

Oh I forgot I had puffed rice (gluten-free) today with pacific rice milk. NOT GOOD. How weird is that? Arent those both very safe foods?

This headache is really starting to hurt. It must be related to everything else.

<_<

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,502
    • Most Online (within 30 mins)
      7,748

    Nadaly100
    Newest Member
    Nadaly100
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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.
×
×
  • Create New...