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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ra, Tmj Or Similar Anyone?


jnifred

Recommended Posts

jnifred Explorer

Just a forewarning, this is waayyyyy too long, sorry, but I wanted to get it all out there....

I was diagnosed by symptoms about 6 years ago with Ankylosing Spondylitis, but all my blood tests were negative so it was all based on my sypmtoms. I originally went to the RA doc b/c of severe TMJ/lockjaw in one side and my thumb which had been swollen for years, along with intermitten bouts of swelling in other fingers and toes. I thought I had RA, but after a whole list of questions my Dr. decided it was more AS instead. I was treated with Methotrexate and Arava and some other fun stuff after Celebrex and the like did nothing. I still had some really bad flare ups so we went to Enbrel which helped tons. I still had some minor swelling and joint pain on occasion, but overall was fine. I did still have some issues with sleep, back pain at night kept me from getting rest even though I'd sleep for HOURS.... A muscle relaxer finally helped with that.

About 2 1/2 years ago I had to go off Enbrel b/c of unexpected pregnancy (#4 boy) and was on very low dose of Prednisone off and on as needed during that. Since then I have been on and off prenidsone and muscle relaxer most nights to get some rest. I wouldn't call myself in a lot of pain, but that of course is subjective and I guess maybe I have learned to live with a lot of it, plus I do have a high tolerance for pain. Anyway.....I have just recently (b/c of my mom) started looking into celiac's.

My Grandma has for years, forever and ever, had bowel problems. Constant diarrehea, several times a day, she gets so sore she can't walk. She has been diagnosed with IBS and diverticulitis, but I have absolutely no faith in most of her docs, as I think they are Cracker Jack docs. She is heavy, not even remotely on the thin side, so I don't know how that plays into it. But looking at the symptoms of Celiacs, she has (off and on) had well over half of the things listed. Over the last 10-15 years my mother has started in with some of the same symptoms as Grandma, and now I am starting in with the same stuff.

Mom and I both have some sjogrens also. Her fingers just get absolutely white and cold as ice, I only have 1-2 fingers affected so far and rarely. She has been diagnosed with rosacea also, although I kind of question that for various reasons. That side of the family is at least 50% Irish/Scotch with a lot of Dutch and German and lots of other stuff in there. My dad's side of the family is TONS Swede, grandpa 100%, grandma that plus German and English. They both died in their early 60's of heart attacks, and being Swede did NOT under any circumstance discuss "bodily functions" or illness unless death was imminent. So I have no Idea about any of their possible issues. My dad was diagnosed with Sarcoidosis that affected his brain and eyesight, he died about 6 yrs after the diagnosis. He also had self diagnosed gout but never went to a doc, so who the heck knows.

I have in the past few years become more and more intolerant of certain foods. I have a seriosuly rumbly stomach at times, gassy (eeewwww!!!) to rival the boys, bowel movements that require 2-3 flushes because of the amount of toilet paper needed to clean myslef (sorry, TMI!!) and every bathroom has Vaseline in it to help with wiping, I even carry a small Vaseline in my purse just in case. I have been experimenting with the gluten free diet. I ahve remained gluten free during the week and then eaten whatever on the weekends for the past 2 1/2 weeks. I have noticed a HUGE difference even after jsut 1-2 days gluten free, with everything, from my joitn pain, to the TMJ, to the nasty bowel stuff. Is this normal, or is it all in my head????

My jaw which was almost completely pain free this past week is killing me right now, to the point that I am carefully choosing what to eat so I don't have to chew too much. My hands are stiff, and I have had more gas this weekend than I had all week. I haven't had that much gluten, jsut a small amount really, so I am wondering if the severity of the symptoms can be related to the amount of gluten???? My husband thinks I am nuts, maybe it is jsut the stress of ahving everyone home this weekend and him working ALL weekend, leaving me to entertain 4 boys and referee the fights.

He says to just go to the doctor and find out, which I do plan on doing, but what if it all turns out negative and then I have nothing to back it up with??? I am tired of not knowing what is wrong with me. I have been fighting exhaustion, aches and pains and etc since I was 25, that is 11 years. I am young, have a great family and a pretty nice life, it really sucks to be cranky and irritable when I know that it is not my personality to be that way, it is just not getting the rest that I need, dealing with various aches and pains and having a bloated, gassy stomach everytime I eat. IWhen my flares were really bad I felt like a 90 year old, it really sucked and Dh tried to be supportive, I know he did, but he just did not and still does not understand.

I am writing all of this in the hopes that SOMEONE can relate to all of my symptoms. I know that the list is endless as to what can happen with Celiacs, I just want to have someone tell me they have had a similar experience so I don't feel crazy, esp. if the bloodwork comes back as normal. I HATE normal bloodwork, I know there is something there, my first RA doc did too, he was so good!!! But we moved and I could not convince him to move with me......oh well.

Anywhoooo, if you ahve made it this far, thank you for listening to my rambles, I wait to see if anyone out there understands were I am coming from.....Thanks again...Jennifer


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Food for Life
Food for Life



Celiac.com Sponsor (A8-M):
Little Northern Bakehouse


Paul-Bunyon Newbie

Sounds like you have had waaay more than your fair share of tough stuff. I dont have the pain you do, but I just wanted to say "hang in there."

TheLibertarian Rookie
:( I was diagnosed with RA before being diagnosed with celiac disease. My symptoms are not very severe and I do not take prescription meds for them. When the weather changes, though, I do have some pretty bad pain in my back.
lizzy Apprentice

i have swollen joints in my jaw too and ear ache to go with it but since gong gluten free its slowley getting better. and so are my other joint pains. it takes time for your body to adjust and heal. why are you eating gluten on a weekend u really need to stick to it 100% to feel the benifits liz

Rachel--24 Collaborator

Just wanted to say I had all your same symptoms + a whole lot more. I had bad TMJ for about a year. I couldnt fully open my mouth. The joints and muscle were always swollen and very painful. I also had swollen glands and pretty much my whole head was puffy and swollen. My neck was also unbearably stiff and would crack alot. My hands would and fingers were also puffy and stiff. When I went off gluten everything got tons better. I dont have TMJ anymore unless I eat gluten. I used to have to wear a splint and I havent worn it once since the day I changed my diet. The swelling is not completely gone but about 85% better. I do gluten myself accidently quite a bit though. I was looked at by all the specialists and had tons of tests done but nothing was ever found. My celiac bloodtests were neg. but I had been off gluten before the tests. I was checked for RA, Sjogrens, Myasthenia Gravis, MS and other stuff but nothing came back positive. I do have Graves disease though and I was also dx'd with Rosacea...which was a false diagnosis...I dont have it and never did. I get weird bumps or blisters when I'm glutened and thats what they thought was Rosacea. :huh: Anyways back then I'd never heard of gluten so I just believed what they told me. I ended up testing positive with Enterolab tests 3 months ago so I'm still just starting out I guess.

jnifred Explorer

Thanks, I was jsut experimenting these past few weeks with gluten to see if it did make a difference. I am eating gluten now to see if I can get a true reading when I go to the doctor this week. I was only off for 5 days but it made such a huge difference. If these come back negative I am going to pay for the Enterolab testing. My itchy spots are back in full force too now, just overnight. I get red itchy, almost to the point of painful kind of a burning sensation, rashes around my eyes mostly. Those were gone last week when I was doing gluten-free, but back now that I have been eating all of it this weekend. If these tests come back normal I am going to scream so loud I promise you will hear it.

Anyway, thanks for responding, esp you Rachel, knowing someone else is out there with all of my issues (plus) makes me feel better. I hate second guessing myself, but I know that all this is just not right. And I can't keep going on and off prednisone forever.

jams Explorer

Hey there!!!

I just wanted to say...the symptoms are so similar to celiac disease that it could be!! Eat your gluten, feel like crap and get your test!! :) It completely stinks that we have to eat gluten to get the diagnosis! However, you would then KNOW it is in your family and you can watch out for EVERYONE else!! That is what mom's do best! Take it day by day. Be honest with yourself and your dr. IF it comes back normal, just remember that being gluten free makes YOU feel better. If it helps YOU... that is all that matters!!!

My motto... IF MAMA AIN'T HAPPY AIN'T NO ONE HAPPY!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Tierra Farm
Lakefront Brewery



Celiac.com Sponsor (A8-M):
Daura Damm


Rusla Enthusiast

jnifred,

Sounds like you are writing part of my story. I have had TMJ for about 25 years now, so bad that they have to put me out with sedation to do my teeth. As pain killers are out of the question because of numerous allergies I learned to tolerate the pain.

Now that I have been gluten free totally for the last week, I have noticed I have had not one tmj pain or contraction in my jaws. Unfortunately, and I am not looking forward to it, I have to go back on gluten next week.

I find I don't get my tired spells when I am not on gluten also, but then I know gluten has not totally left my system after years of eating the stuff.

Your story sounds like mine and so many others on here. I would say that it sounds like we are all paddling the same boat.

I know how difficult it can be with doctors and more so with old world Eurpean families. My parents knew nothing about anything in their families because neither my Danish or Italian grand parents would talk about it and neither would my parents. Which in itself was a crime mainly out of ignorance. Now my mother will talk with me about her health issues which there is a correlation between her issues, my sister, brothers and me. Although she doesn't believe she has this, my sister may have this and so may my younger brother. Just my younger brother is chicken about this stuff and my sister is not going through everything that I am or have but she is watching.

I wish you good luck and suggest you try to find a civilized doctor who will do something and do it right. I am having problems with doctors up here. The majority totally despise anyone who does research like I do.

Archived

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


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      130,283
    • Most Online (within 30 mins)
      7,748

    CSK 157
    Newest Member
    CSK 157
    Joined

  • Celiac.com Sponsor (A20):
    GliadinX


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    GliadinX



  • Upcoming Events

  • Posts

    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
×
×
  • Create New...