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

Celiac Disease And Ulcerative Colitis


bumblebby

Recommended Posts

bumblebby Newbie

I was diagnosed with UC 13 yrs ago. Since then I have been hospitalized more times then I can count, often for conditions not directly related to UC.

I started reading up about celiac disease recently and decided to try a gluten free diet. Many of my worst symptoms have subsided drastically.

Anybody else see a drastic improvement in their UC on a gluten free diet? Makes me wonder why in all these years I was NEVER tested for celiac disease.


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



Celiac.com Sponsor (A8-M):



Noel1965 Apprentice
I was diagnosed with UC 13 yrs ago. Since then I have been hospitalized more times then I can count, often for conditions not directly related to UC.

I started reading up about celiac disease recently and decided to try a gluten free diet. Many of my worst symptoms have subsided drastically.

Anybody else see a drastic improvement in their UC on a gluten free diet? Makes me wonder why in all these years I was NEVER tested for celiac disease.

Hi Bumblebby - I don't know if what I will have to say will help you but you sure have me questioning a link between celiac and UC as well. When my son was born in 1993 he cried constantly and his doctor said it was colic. As time went by (weeks) he continued to cry nonstop and could not keep his formula down. A few tests were done but did not get a diagnosis soon enough to avoid the tragedy soon to come. My husband (at the time) shook my son and damaged his brain very badly. He was left severely brain damaged, blind, cerebral palsy, seizures.... After this his crying and inability to keep food down was thought to be related to his brain damage. He had surgery so his food would go directly to his stomach and a fundo. to keep the food down. A few years after that he was diagnosed with UC and based on the symptoms I believe it was diagnosed correctly. He got a colostomy bag and had constant D which I thought was because of the shortening of the length of intestine he had. My Jordie passed away last year due to RSV and pneumonia.

A few months ago I saw an episode of "House" with the outcome being the mother had celiac and her baby also had it. I now question whether or not my Jordie had celiac and that was the start of our"new lives". My friends say not to think about it as it doesn't change anything but I wonder if that was the problem.

So yes, if I was told there was a link between celiac disease and UC I would believe it.

bumblebby Newbie

Sorry to hear about your son. That is just horrible.

It would be interesting to see if there are more people who have had experiences that they believe relate UC and celiac disease.

bmzob Apprentice

i have a feeling it might be related too b/c i ended up with uc and celiacs as well. I know UC is a very common misdiagnoses of celiacs. i'm planning on doing more research on it online.

mouse Enthusiast

I am so sorry Noel for the hardship that you and your son had to go through. I am sending you many Hugs.

I was diagnosed about 40 years ago with UC. Over the next couple of years it went away. Before it disappeared, I was in the ER several times and put on so many drugs to control the pain. Which leads me to believe that it was not UC but probably my undiagnosed Celiac Disease.

Noel1965 Apprentice
I am so sorry Noel for the hardship that you and your son had to go through. I am sending you many Hugs.

I was diagnosed about 40 years ago with UC. Over the next couple of years it went away. Before it disappeared, I was in the ER several times and put on so many drugs to control the pain. Which leads me to believe that it was not UC but probably my undiagnosed Celiac Disease.

Thanks for the hugs mouse.....unfortunately I am still needing them. So based on the responses so far it does look like there could be a connection. It just angers me so much if celiac disease was what my son had to start and the doctors missed it and the death of my son and the pain for all of us could have been avoided! Sorry for ranting just so much pain

jerseyangel Proficient

Noel, please accapt a hug from me, too. I don't know much about UC, but it does seem like there could be a link. I know that a lot of UC patients do better on a gluten-free diet.

I'm so sorry about what happened to your Jordie. Your story made me so sad. I also don't blame you for still trying to get answers for him. Not being able to change what happened is no reason to tell you to move on and not think about it. It's quite possible that the poor little thing had Celiac--of course you'll never know for sure but it's clear that there was something else going on with him.

Take care :)


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



Celiac.com Sponsor (A8-M):



spunky Contributor

I'm sorry for your pain, Noel. Doctors seem to be of no help in these things and much suffering comes because of their inadequacy, many times.

I've read of a curious link between nicotine and ulcerative colitis. Some people with ulcerative colitis get sick of the awful, often ineffective drugs, and use either a nicotine patch, or real tobacco in the equivalent of around 4 cigarettes' worth per day to control uc symptoms.

I've run across another study that says celiac disease doesn't happen as much in smokers as in nonsmokers, same as uc. Sometimes when people stop smoking they get smacked with sudden onset of celiac or uc.

I've read another study that says canker sores are a common complaint in people who stop smoking...canker sores can sometimes be a symptom of celiac disease.

I think if doctors had as much brain power as they want us to believe, research would be ongoing to find a safe way to deliver nicotine to people who could benefit from it medicinally, not to mention just learn to accurately diagnose people so that they can fight a disease before it destroys life and health.

Archived

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

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

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    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. - 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.

    5. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.