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!

Just Saw My Dr


JLK

Recommended Posts

JLK Rookie

I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment. He wants me to do a month long elimination diet and cleanse. Most of the diet recommendations I already follow, having figured it out myself but there are some differences I'd like to get your feedback on.

The diet would require me to forgo beef :unsure: and alcohol :o for a month. I live on beef! Start my day with it. I follow the Blood Type Diet for a type O and I can't seem to get the day started if I don't eat beef. This diet/cleanse would require that I start the day with a Metagenics Smoothie -- UltraClearPlus. Anyone out there tried this? It is balanced; 15g protein, 19g carbo, 3g fat, with vitamins, minerals and amino acids. He says I can have more protein as a snack later.

The primary guidelines are:elim dairy, eggs, beef, pork, veal, gluten, caffeine, citrus, peanuts, etc, etc, and alcohol. It says "eliminate gluten, avoid foods that contain wheat, spelt, kamut, oats, rye, barley, amaranth, quinoa and malts" Now we all know that amaranth and quinoa are gluten-free; do you think they are included as an elim because of the possibility of cross-contamination, or simply because they might be hard to digest, or is it a mistake? I just bought some of both to expand my choices!!!!

And really, mightn't a glass of red wine be OK? Even helpful?!

And I am supposed to (already have) eliminate all of the environmental estrogens in my life. As docs go, he is way ahead of the curve!

Judi

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast
I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment. He wants me to do a month long elimination diet and cleanse. Most of the diet recommendations I already follow, having figured it out myself but there are some differences I'd like to get your feedback on.

The diet would require me to forgo beef  :unsure:  and alcohol  :o  for a month. I live on beef! Start my day with it. I follow the Blood Type Diet for a type O and I can't seem to get the day started if I don't eat beef. This diet/cleanse would require that I start the day with a Metagenics Smoothie -- UltraClearPlus. Anyone out there tried this? It is balanced; 15g protein, 19g carbo, 3g fat, with vitamins, minerals and amino acids. He says I can have more protein as a snack later.

The primary guidelines are:elim dairy, eggs, beef, pork, veal, gluten, caffeine, citrus, peanuts, etc, etc, and alcohol. It says "eliminate gluten, avoid foods that contain wheat, spelt, kamut, oats, rye, barley, amaranth, quinoa and malts" Now we all know that amaranth and quinoa are gluten-free; do you think they are included as an elim because of the possibility of cross-contamination, or simply because they might be hard to digest, or is it a mistake? I just bought some of both to expand my choices!!!!

And really, mightn't a glass of red wine be OK? Even helpful?!

And I am supposed to (already have) eliminate all of the environmental estrogens in my life. As docs go, he is way ahead of the curve!

Judi

<{POST_SNAPBACK}>

The doctor told you everyone was gluten intolerant and if you were celiac then they would know by now...thats a bunch of bull he is feeding you. He sounds like the regular doctor who knows nothing about celiac.

Have you been tested for celiac? Have you been on ther diet?

Link to comment
Share on other sites
Rachel--24 Collaborator
I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment.

<{POST_SNAPBACK}>

What?? :unsure:

I don't understand that statement. How does he know you have leaky gut....were you tested for it or is he just making an assumption?

Link to comment
Share on other sites
Carriefaith Enthusiast

hmmmm... :huh:

If I were in your situation, I would get a second opinion on this. Has he tested you for celiac disease or anything else before he made a diagnosis of leaky gut syndrome?

Link to comment
Share on other sites
JLK Rookie

Making an assumption Rachel. I don't have insurance for any testing right now. I know I am gluten- and casein-intolerant with additional food sensitivities which I developed over the past few years. I think he was making his Dx based on my history.

My doc believes everyone is gluten-sensitive to a degree, whether they notice it or not because gluten is so resistant to digestion. He believes it tires every body out since the body works so hard to eliminate it. This is true, it's all a matter of degrees. These seed storage proteins are very resistant to all sorts of proteinases. Human were not meant to eat grass! Distinct from the IgA-mediated destruction of villi in celiacs, just physically getting rid of it tires a body out. The protein isn't broken down and so the immunogenic peptides continue stimulating cells, causing release of cytokines, etc that wear the body out since it is a constant state of stimulation. The peptides finally leave one's system when the cells carrying them actually die and slough off, faster than they would if they were quiescent, but still takes months for a completely new lining.

Whether the digestion-resistant peptides are presented to white blood cells (in celiacs) or not (non-celiacs), it still goes through all the processing other immunogenic peptides go through. This is harder on cells that the typical processing of digestible proteins and peptides. Essentially, if a food is broken down small enough, the resulting amino acids aren't immunogenic. If food can't be broken down well, it stimulates a response in dendritic cells and then depending on one's genetic predisposition (ie carrier status of HLA "celiac" and "alternate celiac" alleles), the dendritic cells will present the peptide to leukocytes to induce an immune response, or not.

For further reading:

The Journal of Immunology, 2004, 173: 1925-1933.

Copyright © 2004 by The American Association of Immunologists

Wheat Gluten Causes Dendritic Cell Maturation and Chemokine Secretion1

Marina Nikulina*, Christiane Habich*, Stefanie B. Flohé*, Fraser W. Scott and Hubert Kolb2,*

* German Diabetes Research Institute at the Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany; and Molecular Medicine, Ottawa Health Research Institute, Ottawa, Ontario, Canada

Wheat gluten causes gut inflammation in genetically predisposed individuals. We tested the hypothesis that wheat gluten is not only a target of adaptive immunity, but also modulates the function of APC. Dendritic cells (DC) derived from the bone marrow of BALB/c mice were exposed to chymotrypsin-treated wheat gluten. This induced DC maturation as estimated by all surface markers tested (MHC class II, CD40, CD54, and CD86). The effect was dose dependent, and, at 100 µg/ml gluten matched that caused by 10 ng/ml LPS. A role of endotoxin contamination was ruled out by demonstrating the resistance of wheat gluten effects to LPS antagonist polymyxin B. DC from LPS nonresponder strain C3H/HeJ were affected by wheat gluten, but not by LPS. Proteinase K-digested wheat gluten was unable to stimulate DC maturation. Wheat gluten induced a unique secretion pattern of selected cytokines and chemokines in DC. Classic pro- or anti-inflammatory mediators were not produced, in contrast to LPS. Rather, chemokines MIP-2 and keratinocyte-derived cytokine were secreted in large amounts. We conclude that wheat gluten lowers the threshold for immune responses by causing maturation of APC, by attracting leukocytes and increasing their reactivity state. In the presence of an appropriate genetic predisposition, this is expected to increase the risk of adverse immune reactions to wheat gluten or to other Ags presented. Open Original Shared Link

Leaky gut syndrome with gluten intolerance, isn't this celiac? Unless he doesn't think the gluten caused the leaky gut but developed afterwards... which doesn't seem likely! Well, Katie, this was the first time I had discussed it with him. Perhaps he'll brush up by my next visit. And perhaps I should send him all the journal references I have? It was a better response than I thought a typical family practitioner would give but I don't know whether it is just matter of semantics.

I know I am gluten-intolerant but I don't know if I am celiac. I know eating other foods is resulting in immunogenicity towards those foods, at an alarming rate (leaky gut).

An elimination and gentle detox can only help but should I put money into the UltraClearPlus? Or continue eating right? Egads.

Judi

Once again, sorry this is so long.

Link to comment
Share on other sites
Carriefaith Enthusiast
I don't have insurance for any testing right now.
I'm from Canada so I don't really understand the US health care system, but if there is no way that the testing can be done, than I would just go gluten free. If the testing can be done in the near future, than I think that it is worth waiting for to get the testing done and maybe getting a second opinion, like I mentioned earlier. But then again, I'm not from the US so I don't know how easy or hard it is to do these things.
Link to comment
Share on other sites
lbsteenwyk Explorer

Judi:

Where does the UltraClear Plus supplement come from? Is your doctor going to sell it to you? If so, I would be highly suspicious of his motives.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
I know I am gluten-intolerant but I don't know if I am celiac. I know eating other foods is resulting in immunogenicity towards those foods, at an alarming rate (leaky gut).

<{POST_SNAPBACK}>

Fortunately I had the means to get various testing done. I would have thought (based on my symptoms) that Candida/Leaky Gut syndrome would have been likely the cause for my multiple food intolerances & chemical sensitivies. Surprisingly I tested neg. for leaky gut, candida, parasites & all other pathogens. What I've discovered is that symptoms worsen dramatically following gluten consumption. All of a sudden I lose weight and seemingly my immune system is reacting to all foods and chemicals. This would suggest leaky gut...yet I tested negative. Also at the height of my illness when I was having extreme reactions to everything I ate I had ELISA food sensitivity/intolerance tests done which came back NORMAL. Apparantly my immune system wasn't reacting to food particles as is the case with leaky gut. I used Great Smokies Lab which has a great reputation so I don't really question these results. The only test to ever come back positive for me was the Enterolab. It seems more likely that you have celiac disease and if you DO have leaky gut its probably a result of celiac disease. If its not celiac disease is your doc trying to find out the cause of the leaky gut...I don't think it can be *cured* without finding out why its there to begin with.

Link to comment
Share on other sites
Rachel--24 Collaborator
Judi:

Where does the UltraClear Plus supplement come from?  Is your doctor going to sell it to you?  If so, I would be highly suspicious of his motives.

<{POST_SNAPBACK}>

I agree. Lots of alternative doctors (I'm making an assumption that yours is) will dx candida, leaky gut, or other conditions that require you to take lots of expensive supplements. I also have seen an alternative doctor...she has never tried to sell me anything...If she had I would've been out the door as I'm very suspicious of those kinds of treatments.

Link to comment
Share on other sites
Jnkmnky Collaborator

Isn't leaky gut the result of inflammation caused by being gluten intolerant? Can you have leaky gut without having Celiac disease? I thought you couldn't have leaky gut without Celiac disease. :blink:

Link to comment
Share on other sites
Rachel--24 Collaborator
Isn't leaky gut the result of inflammation caused by being gluten intolerant?  Can you have leaky gut without having Celiac disease?  I thought you couldn't have leaky gut without Celiac disease.  :blink:

<{POST_SNAPBACK}>

Something's gotta cause the leaky gut...not necessarily celiac disease...other conditions can cause it as well. If a person suspects celiac disease or is sensitive to gluten and also has symptoms of leaky gut I would think the sensible thing to do would be to remove the gluten from the diet. I think this doctor is just trying to make some $$ by treating the symptom rather than diagnosing the cause. But then again I'm sometimes a little paranoid about doctors and their motives...I think I've been jaded <_<

Link to comment
Share on other sites
Jnkmnky Collaborator

I was just researching it on the net and found so many confusing things regarding it. I guess there's no real clear answer everyone agrees on so if you have a weird condition, you heap on leaky gut?? It seemed like that on the sites I was checking out. Makes more sense to tie leaky gut into a condition that causes intestinal inflammation...like celiac disease.

Link to comment
Share on other sites
Rachel--24 Collaborator
Makes more sense to tie leaky gut into a condition that causes intestinal inflammation...like celiac disease.

<{POST_SNAPBACK}>

Yeah...I agree....anything involving damage to the intestines.

Link to comment
Share on other sites
JLK Rookie

Well folks,I think this is just a matter of semantics; same phenomenon but at what degree does it get called celiac instead of gluten intolerance, or subsequent leaky gut? I think the disease is a spectrum from

people with no symptoms and no damage (haven't had a triggering event yet),

to people with no symptoms but positive biopsies (the gold standard for Dx of celiac)

and people with both gluten-intol symptoms and some degree of damage; maybe detectable by biopsy, maybe not,

and people with gluten intol, other food intolerances due to leaky gut (but gluten damage happened first (maybe biopsy + or -)

and people with casein intol first then gluten (rare buggers these!)

etc! Of course, there are the people out there too who have leaky gut syndrome induced by say a bacterial toxin and have developed sensitivities to foods they normally eat, but since they don't eat wheat...say it's a rice based diet!...they don't have celiac. And if these people were given the typical American meal (gluten) they would then be instantaneously gluten-intolerant and ...celiac if there biopsies were positive! ;) But perhaps they don't carry the known celiac alleles of the HLA because their ancestors didn't eat a wheat based diet. The biopsy is obviously not a gold standard diagnostic!

We are all unique and in my humble opinion, it is all a matter of degrees along the spectrum of a single disease phenomenon--what happens when the lining of our stomachs no longer provides an effective barrier.

BTW, I just read a description of dermititis herpetiformis and guess what? I thought those were insect bites of some kind, like fleas. But itchy pus-filled raised bumps...there are two healing on my leg and I have been getting them for a couple months. Would you guys describe any DH you might have? Thing is, I never remember getting bitten when I have these.

OK. Seems clear to me :rolleyes:

Ok. Katie, maybe I was giving him too much credit, eh?

BTW, I just read that NSAIDS and other pain medications can lead to leaky gut syndrome and guess what the orthopedic specialists (not my family doc) had me taking rather large doses of after my injury five yrs ago? So much so that I thought the NSAIDs were the cause of my hematuria (which presented before any gastointestinal symptoms, etc). So chicken or egg comes first? Doesn't really matter now does it? Not like I'd EVER be able to establish that THEY provoked the leaky gut and subsequent onset of celiac. Probably would've emerged at some point later in life, so maybe I should just be thankful that at least I know now.

Damn.

Link to comment
Share on other sites
Rachel--24 Collaborator
BTW, I just read a description of dermititis herpetiformis and guess what? I thought those were insect bites of some kind, like fleas. But itchy pus-filled raised bumps...there are two healing on my leg and I have been getting them for a couple months. Would you guys describe any DH you might have? Thing is, I never remember getting bitten when I have these.

<{POST_SNAPBACK}>

I don't know if what I get is DH or not. The first time I got it was before I went gluten-free. I had avoided fast food for awhile and was trying to eat better..I felt good for 4 days in a row (which was a big deal for me)...I decided since I felt so good I could reward myself with some Taco Bell (2 bean burritos with s/c my fav). The next day all my symptoms were back and I had a bad rash on my arms. I was scratching it and it got worse. To me it looked like poison oak..so thats what I assumed it was until it dawned on me that I don't have poison oak in my home or car :blink: . I got scars from that episode. Since then I've continuously had very small red bumps on the inside of both arms at the elbows...sometimes they itch..but never as bad as that first time. My doc says that lots of things can cause rashes though. I'm not sure if it was DH or not but I DO know that since I've cleaned up my act and am *totally* gluten-free now...I havent had any bumps all week.

Link to comment
Share on other sites
emeraldskies Rookie

I always wondered about the legitimacy of leaky gut syndrome, but recently I've been questioning a lot of things that are commonly believed and disbelieved and have found new answers. I have found evidence of leaky gut syndrome to be demonstrated in many scientific studies. It has been associated with alcoholism, autism, liver damage, NSAIDs (as already mentioned), Crohn's, celiac disease, and other intestinal disorders. They can test it by monitoring lactulose and mannitol levels in the urine. That's what the test at Great Smokies, the Intestinal Permeability Assessment, looks for. So if anyone is concerned that they may have it, try testing for it. It can be treated with oats (probably not an option) or zinc.

Link to comment
Share on other sites
  • 5 months later...
julie5914 Contributor

I have a doctor like yours - probably trained by Jeffrey Bland. I like her but remain suspicious because of the things mentioned here. I did shell out the big bucks for the ultra clear plus, mostly because when I make it a shake it is high protein and has a lot of vitamins, and I could not find a liquid vitamin supplement for much less. She told me to stay on my regular diet because she didn't want me to lose weight.

I am almost done with my jar, and I don't really notice any difference. My muscles still ache more than usual, my stomach is doing ok and was before she told me to go on it. The ultra clear plus can only be ordered by a doctor, but I found it on ebay as well. I will probably not reorder though. She also told me leaky gut and told me to start taking bifidus. I will probably not see her again unless things get bad or they call me first. Otherwise, I will ride it out and go see my gastro doc in another 6 months to see if my labs are finally normal.

Link to comment
Share on other sites
chrissy Collaborator

as far as the doc saying that everyone is gluten intolerant---------i read recently that none of us are aable to digest wheat totally----do you suppose that's what he is referring to?

christine

Link to comment
Share on other sites
marciab Enthusiast

Just a word of caution. I haven't tried the Ultraclear Plus, but I have tried the Metagenics Ultra Meal Rice. It was recommended to me by my medical doctor many years ago. Metagenics actually has a good reputation. I found it this time at a chiropractor's office for $30. I thought it would be safe because it was made from rice. Rookie mistake - still getting the hang of this "gluten free" and "allergen free" labelling. On one side of the canister it says it is formulated to "exclude wheat gluten, corn protein, yeast, soy protein, etc". BUT, under nutrition facts it says it is "produced in a facility that produces other products with soy, fish, tree nuts, dairy, and custacean shellfish". It caused me to have stomach cramps, gas and bloating. So you might want to check with Metagenics before you order it. (www.metagenics.com) I just started using Ruth's Hemp and Sprouted Flax protein powder. I emailed them and was told that there are no other ingredients in it. Also NutriBiotic rice protein is labelled "gluten free" and "free from soy, milk and egg proteins". I have to have protein in the am, too. And I learned the hard way not to shake or put rice protein in blender as it will cause extra bubbles which cause gas .... Good luck marcia

Link to comment
Share on other sites
ravenwoodglass Mentor
I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment. He wants me to do a month long elimination diet and cleanse. Most of the diet recommendations I already follow, having figured it out myself but there are some differences I'd like to get your feedback on.

The diet would require me to forgo beef :unsure: and alcohol :o for a month. I live on beef! Start my day with it. I follow the Blood Type Diet for a type O and I can't seem to get the day started if I don't eat beef. This diet/cleanse would require that I start the day with a Metagenics Smoothie -- UltraClearPlus. Anyone out there tried this? It is balanced; 15g protein, 19g carbo, 3g fat, with vitamins, minerals and amino acids. He says I can have more protein as a snack later.

The primary guidelines are:elim dairy, eggs, beef, pork, veal, gluten, caffeine, citrus, peanuts, etc, etc, and alcohol. It says "eliminate gluten, avoid foods that contain wheat, spelt, kamut, oats, rye, barley, amaranth, quinoa and malts" Now we all know that amaranth and quinoa are gluten-free; do you think they are included as an elim because of the possibility of cross-contamination, or simply because they might be hard to digest, or is it a mistake? I just bought some of both to expand my choices!!!!

And really, mightn't a glass of red wine be OK? Even helpful?!

And I am supposed to (already have) eliminate all of the environmental estrogens in my life. As docs go, he is way ahead of the curve!

Judi

Boy do I wish I had your doctor years ago. It took me years to find a doctor who would guide me through a real elimination diet. Do what he says and yes you do need to forgo alcohol and beef at first. Ask him if you can add beef in first to eliminate that as a problem so you can add it back in quickly. They are eliminating not just gluten containing foods but also any that will commonly cause reactions. Many of us have other intolerances as well and the elimination diet will help to pinpoint these. DO NOT CHEAT even a bit while doing the elimination. It will be hard at first, I started with just cranberry juice, turkey, sweet potatoes and plain rice, all foods I hated, the doc said since I rarely ate them I would most likely not be intolerant to them. Also as your doctor will let you know some intolereances may 'go away' after you heal a bit, dairy is a good example of that for many of us. Good luck, and I hope you get some relief.

Link to comment
Share on other sites
CMCM Rising Star
Boy do I wish I had your doctor years ago. It took me years to find a doctor who would guide me through a real elimination diet. Do what he says and yes you do need to forgo alcohol and beef at first. Ask him if you can add beef in first to eliminate that as a problem so you can add it back in quickly. They are eliminating not just gluten containing foods but also any that will commonly cause reactions. Many of us have other intolerances as well and the elimination diet will help to pinpoint these. DO NOT CHEAT even a bit while doing the elimination. It will be hard at first, I started with just cranberry juice, turkey, sweet potatoes and plain rice, all foods I hated, the doc said since I rarely ate them I would most likely not be intolerant to them. Also as your doctor will let you know some intolereances may 'go away' after you heal a bit, dairy is a good example of that for many of us. Good luck, and I hope you get some relief.

How long did you eat the cranberry juice, turkeym, sweet potatoes and plain rice (white rice???) before you started adding foods back in? Would you add just one food at a time and then wait a day or two...or longer?

Link to comment
Share on other sites
ravenwoodglass Mentor
How long did you eat the cranberry juice, turkeym, sweet potatoes and plain rice (white rice???) before you started adding foods back in? Would you add just one food at a time and then wait a day or two...or longer?

I went 2 weeks with just those foods, I was gut symptom free within a week. We added stuff in one at a time for a week. The food was added in in pure form, for example a plain baked or boiled potato with no butter or spices was eaten a couple times a day for a week. When no reaction was seen something else was added in in pure form. I added in wheat as the second food in the form of cream of wheat, it took 3 days to get a reaction. But boy did I get one. I continued the diet for a couple of months to make sure I was not sensitive to anything else and only reacted to walnuts and tomatoes and dairy. After I healed for 6 months I was able to add dairy back in. It is a long process but well worth it. It is unbelieveable how hard it is to find a doctor that will guide you through this but it really is something that can be done on your own. Many people have trouble with the pure food concept, for example rice crispies are not a 'pure' food. If you put spices on it, even pepper it is not a pure food, and so on. Feel free to email me if you want to and I can answer anything else about this for you. Hope you get some relief soon.

Link to comment
Share on other sites
Claire Collaborator

UltraClear makes several highly recommended products.

As for the Leaky Gut - you definitely do not have to have celiac disease to have this condition. I have had the LGS for many years. I do not have Celiac. I may or may nnot have gluten sensitivity - not tests results on that.

With LGS you become increasingly more intolerant of food until almost everything you eat is a problem.

I had good healing from L-gluatimine but then was told to stop taking it. The reason for that is that I have neurological problems (possibly caused by gluten) and the area of the brain that is damaged may not be able to properly process glutamine - making neurological problems worse. Claire

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,496
    • Most Online (within 30 mins)
      7,748

    JamesDavid
    Newest Member
    JamesDavid
    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

    • 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.
    • 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? 
×
×
  • Create New...