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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.