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

Crohns/uc/colitis And Celiac


cookie22

Recommended Posts

cookie22 Newbie

Hi everyone, I thought I'd start this topic to see who else is out there in the same boat as me, celiac and crohn's disease, and if anyone wants to talk about it/vent/find support!?

  • 2 weeks later...

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



Celiac.com Sponsor (A8-M):



Elena M Newbie

My husband is recently diagnosed with Celiac and ulcerative colitis. He is on medication for the colitis. The frustrating part now is trying to make all the diet changes (he is now gluten-free, dairy-free, soy-free and corn-free) and calm down the colitis, but he is still not gaining any weight back (he lost 15 pounds and he was thin to begin with!). Any suggestions would be so welcome!

somegirl2004 Newbie

I'm in the same boat... I was diagnosed with celiac in June 2005 and Crohn's in December 2005.

Doesn't it suck taking so many pills every day?!?! I'm only 21, but my pill collection makes it look like I'm in my 80s!

corinne Apprentice

I have collagenous colitis and I follow a gluten free (well actually grain free including corn+rice, dairy free, soy free etc) diet. I haven't been diagnosed with celiac, but my mother has celiac disease.

The gastro. just started me on Asacol so that I can expand my diet a bit, because I'm losing weight, but so far Asacol is making things much worse. To try and keep up my weight, I eat avocado and olives which have healthy fat. I can't eat nuts, but if you can those have lots of good fat calories too.

  • 5 weeks later...
Cheri A Contributor

I'm babysitting for a friend whose dh has Crohn's Disease. I know through my various searches I've seen info on how a gluten-free diet can help with that. But, I can't find the links now. Does anyone else have any links that are helpful? They are at the surgeon's right now to discuss how to help him right now. This will be his 2nd surgery!

evie Rookie

I have collagenous colitis and I follow a gluten free (well actually grain free including corn+rice, dairy free, soy free etc) diet. I haven't been diagnosed with celiac, but my mother has celiac disease.

The gastro. just started me on Asacol so that I can expand my diet a bit, because I'm losing weight, but so far Asacol is making things much worse. To try and keep up my weight, I eat avocado and olives which have healthy fat. I can't eat nuts, but if you can those have lots of good fat calories too.

Nearly one year after Celiac DX I found I have colitis too. Not using any meds but still experimenting to find what causes upsets of both problems...does anyone eer get to the point where you feel safe in what you eat? Do you think emotions enter into theses problems? I am wondering about the colitis if it does not...I am so much better than i was at DX of celiac...have come a long way mostly due to gluten free foods. What does Asacol do for you corrine? Do you plan to do any tests for celiac? If so good luck!! evie :unsure:

  • 3 weeks later...
NicoleAJ Enthusiast

I just went to a celiac/UC specialist at Hershey Medical Center (PA) and she was great. I was misdiagnosed with UC last year. Asacol actually caused paralytic ileus for me (paralysis of the colon)--I was in the hospital for the week fasting for a few days and then liquids only. The doctor seems reasonably convinced that I have Crohns, which I'm really not happy about. I'm going in next month for a gastroscopy and a capsule endoscopy.


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



Celiac.com Sponsor (A8-M):



NicoleAJ Enthusiast

I just went to a celiac/UC specialist at Hershey Medical Center (PA) and she was great. I was misdiagnosed with UC last year. Asacol actually caused paralytic ileus for me (paralysis of the colon)--I was in the hospital for the week fasting for a few days and then liquids only. The doctor seems reasonably convinced that I have Crohns, which I'm really not happy about. I'm going in next month for a gastroscopy and a capsule endoscopy.

  • 2 months later...
Erikee Newbie

I was diagnosed with Crohn's disease of the large intestine (not the small intestine -- lucky) a year ago. While I was at the gastro, I mentioned to him that I have issues with eating wheat so he ran a TTG test just to be sure. It came back positive so they caught the fact that I have celiac as well, which was lucky for me because I didn't have external symptoms yet. Come to find out I have osteopenia caused by malabsorption of calcium, which you wouldn't expect in a man of 42.

I'm taking Asacol for the Crohn's, and in my case it has put it into remission. I also have a hiatal hernia that causes bad reflux, so I'm on a double-dose of prescription-strength prilosec.

I take a lot of pills every day too!

I'm on a Gluten-free Casein-free diet, as are my boys. They don't have celiac but they have dairy and wheat "issues" and the Gluten-free Casein-free diet is helping their digestion and behavior.

spunky Contributor

Have you read up on the Specific Carbohydrate Diet? It sounds promising for these types of inflammatory bowel diseases. Google it and see if it looks helpful.

Also, I've heard of people feeling better taking a product called Digestive Advantage for Crohn's and Colitis...a so-called "functional" food (consisting of a sporgenes-like probiotic...i.e., survives without refrigeration and survives stomach acids, enzymes, etc., and other ingredients) designed specifically to combat those diseases. I take the DA for irritable bowel...and it helps me quite a bit...that one is gluten free, and I'm pretty sure all of their products are...check on their website to be sure. Their products are inexpensive and seem to be very effective!

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. - 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
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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

    • 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.