Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

Figureda Few Things Out

bartfull

By bartfull
in Coping with Celiac Disease

Recommended Posts

bartfull Rising Star
bartfull
Posted

I saw the thread on TMJ yesterday but didn't want to hijack it.

I have had (for the last five years) a very swollen and painful jaw. I have seen two different dentists who both said it is not caused by a tooth, three different MD's who had no idea unless I get an MRI (no insurance so that's out.) plus several holistic healers and some assorted quacks that my friends have dragged me to. Nothing has helped. Doctors say it MAY be a tumor. It MAY be a bone infection. It MAY be a bone cyst. It is NOT TMJ. It is NOT a blocked saliva duct.

After I went gluten and corn free, I had a bit of remission on the jaw. Now, that would often happen anyway. I'll have tremendous pain for two or three weeks, then a month with little more than a twinge. But the lump is ALWAYS there - about the size of a small hen's egg.

I haven't been able to stay "clean" though. Just when I'm feeling better, I try a new food and get sick again. Last time it was Kinikinik english muffins. I was doing so WELL! Psoriasis gone, sleeping like a baby, and not only did the jaw pain go away, but the hen's egg lump shrunk down to robin's egg size.

I'm pretty sure my food intolerances didn't CAUSE the infection, tumor, cyst, or whatever it is, but because my body only has so much healing power to go around, it has been concentrating on trying to heal my gut, and there just wasn't enough left to tackle the jaw.

So now I have vowed to stick to only the foods I know I can have. I won't be trying anything new for a long time. Beef/pork/chicken. Brown rice or new potatoes. Broccoli or cauliflower. AND, it seems the Cape Cod potato chips and the Starbucks ice cream don't hurt me either.

I'd LIKE to try making gravy so that I can have some for Thanksgiving, but I don't want to risk it. I'll take my brown rice chicken and broccoli to dinner, and it'll be just fine.

Am I over reacting? I'm so afraid if I eat the wrong thing it'll start hurting again, and when it hurts, the pain is pretty severe. I can live on the foods I mentioned, can't I? I mean, nutritionally - I already know that my will power combined with my fear will make it easy not to stray away from these foods.

So, forgive me for the long post, but does anyone else have a different, unrelated to Celiac problem that gets worse when glutened?

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted

Bartful, congratulations for your find and coming such a long way! Everytime I hear someone say something about a lump in the throat I just have to ask if you have had your thyroid checked? I had a growth on mine which I am on meds to shrink. Approx half of Americans will end up with one before the age of 50 but many go their whole life without knowing. They are noncancerous. Thought I'd throw that out for info.

And no you are not over reacting. I think it is great that you have something planned already.

We have an invitation to a friend's house and I am now having to do the thinking bit myself!!

I also keep getting gluten, I understand how hard it is. For you is it from items you buys mostly? Mine has been from eating out, suspecting something, eating it anyway and that's what I have to stop. I have to stick with what is safe.

Good to hear you are feeling better!

ravenwoodglass Mentor
ravenwoodglass
Posted

I get a lot of tooth and jaw pain when I get glutened so your not alone. Where is the lump? If it is under the jaw it may be a gland. My entire body was full of swollen glands prediagnosis and it took a long time to go away. Doctors always said it was because I had either 'pickers acne' or dermatitis, actually it was DH.

Hopefully your glands will go down gluten free. Do avoid your other intolerances also and read labels carefully. Kinnickinnick stuff should be fine unless it has another ingredient in it you don't tolerate as it is a dedicated gluten free plant.

bartfull Rising Star
bartfull
Posted
  • Author

The lump is on the jawbone itself, halfway between my chin and the hinge. It is hard as a rock. The doctors said is wasn't a gland, they believe it is a growth, or possibly a bone infection. When it first started they put me on some really nasty antibiotics. I was on Clyndamiacin (sp.) for two weeks, then a different one whose name I can't remember, for an additional four weeks. Nothing happened.

This has been going on for so long I'm pretty sure it's not cancer - I'd be dead by now. But whatever it is, it seems that as long as I stay away from corn and wheat, it improves. And this last time I was doing well on the diet, it had improved so much I had hopes it would go away completely.

I WISH I had insurance. I could get the MRI, get treated, AND get tested for food intolerances instead of playing this guessing game. :(

pricklypear1971 Community Regular
pricklypear1971
Posted

I used to get lumps behind my ears. They'd come and go. I was told stress or allergies...that they just happen. They were going to biopsy it when it went away permanently. The surgeon I went to wasn't concerned about cancer because it would come and go.

What changed?? Quit my job in SF and stopped riding CalTrain. I swear I was allergic to the train or the building (very old) that I worked in.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748
    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.