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

Throat ulcers - Celiac disease - fatal complication


Roy Rowlett

Recommended Posts

Roy Rowlett Newbie

My mother was born in 1918.  She had three children. I am the youngest, born in 1946. She suffered from severe mouth and throat ulcers. I don't know when this started with her. She was treated at Mayo Clinic in Minnesota(?)  She had her mouth and throat ulcers cauterized with silver nitrate regularly.  She could barely eat because of her condition. 

One night when she was 32 and I was 4, her throat ulcers ate into her jugular vein and hemorrhaged.  She bled to death.  The doctor said that if she had been on the operating table when it happened, they would not have been able to save her. Her last words were, "I can't die, the children need me". We have always wondered what her condition was. 

I haven't been able to find a death certificate for her to see what they put down as the cause of death. My sister has gluten intolerance problems and my DNA testing with 23&me.com shows that I have some predisposition for Celiac Disease. I am curious about what was known about Celiac disease in 1950 when she died. If she had gluten intolerance and the throat ulcers were caused by Celiac disease it occurs to me that if she had gone on a gluten free diet she might have survived. 

Have any of you heard of this sort of complication resulting in death?


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



Celiac.com Sponsor (A8-M):



trents Grand Master

I have not head of throat and mouth ulcers in connection with Celiac Disease. Could this have been some sort of fungal condition like thrush or a vitamin/mineral deficiency disease? Vitamin and mineral deficiencies are common with Celiac Disease.

What about yourself? Have you been tested for Celiac Disease apart from the genetic disposition?

Scott Adams Grand Master

Certainly celiac disease can cause severe canker sores:

 as well as many other issues involving nutrient deficiencies, like beriberi among others. 

Just knowing that she may have had genetic markers for celiac disease isn't enough information, because more than 20% of people have the genetic markers, yet don't ever develop celiac disease. More information would likely be needed.

Roy Rowlett Newbie
4 hours ago, trents said:

I have not head of throat and mouth ulcers in connection with Celiac Disease. Could this have been some sort of fungal condition like thrush or a vitamin/mineral deficiency disease? Vitamin and mineral deficiencies are common with Celiac Disease.

What about yourself? Have you been tested for Celiac Disease apart from the genetic disposition?

If you Google "celiac disease throat ulcers" you will see a lot about it.

Roy Rowlett Newbie
4 hours ago, trents said:

I have not head of throat and mouth ulcers in connection with Celiac Disease. Could this have been some sort of fungal condition like thrush or a vitamin/mineral deficiency disease? Vitamin and mineral deficiencies are common with Celiac Disease.

What about yourself? Have you been tested for Celiac Disease apart from the genetic disposition?

I have not been tested for this.  I have no symptoms.

Roy Rowlett Newbie
4 hours ago, Scott Adams said:

Certainly celiac disease can cause severe canker sores:

 as well as many other issues involving nutrient deficiencies, like beriberi among others. 

Just knowing that she may have had genetic markers for celiac disease isn't enough information, because more than 20% of people have the genetic markers, yet don't ever develop celiac disease. More information would likely be needed.

Since she was not cured or helped with her condition, I presume that the doctors did not know what was causing her ulcers. When did Celiac Disease and gluten intolerance become known? She died in 1950 at age 32, 70 years ago.

trents Grand Master

From what I understand, Celiac Disease was first identified during WWII by a Dutch physician. There was a certain area of Holland that was cut off from food supplies by the German army and the population in the area eventually ran out of wheat flour and bread but there was other food available, dairy and some meat I imagine, but some folks cooked their tulip bulbs and ate them. This physician noticed that some of his patients who had been sickly all their lives actually got healthier during the wheat embargo and he made the connection. But it's only been in about the last  25 years that their has been much awareness at all in the medical community about Celiac Disease.


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



Celiac.com Sponsor (A8-M):



Posterboy Mentor

Roy,

Here is a couple links on the History of Celiac disease that might help  answer you question.

But the short answer is no....the test for gluten antibodies wasn't discovered until the early to mid 60s..

https://www.beyondceliac.org/celiac-disease/celiac-history/#:~:text=A Brief Timeline of Celiac Disease First Century,with signs of failure to thrive and malnutrition

https://www.uclahealth.org/gastro/celiac/history-of-celiac-disease

I hope this is helpful but it is not medical advise.

Posterboy,

Roy,

If you have mouth uclers yourself.  Scott has given you a nice article on it.

Here is  a nice recent thread on Cankers Sore that might help you.

I hope this is helpful but it is not medical advise.

Posterboy,

DJFL77I Experienced

canker soars aint gonna kill anyone

GFinDC Veteran

Hi Roy,

Here's a link to a list of GI disorders.  I am not sure if Crohn's Disease could cause your mother's symptoms but it does cause ulcers in the lower GI system.  Eisonophilic esopahgitis is also a GI disorder and does affect the throat and esophagus.  But I don't think it causes ulcers like that.

https://my.clevelandclinic.org/health/articles/7040-gastrointestinal-disorders

 

notme Experienced
8 hours ago, DJFL77I said:

canker soars aint gonna kill anyone

says the guy with the bleeding throat........  🙄

i was actually going to refer YOU to this thread, bud.  

Scott Adams Grand Master

This article covers the history of celiac disease, and 1950 would likely have been too early for most doctors to figure it out (actually even today many doctors can't figure it out!):

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • 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
      @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
      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
      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
      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
×
×
  • 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.