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Still having diarrhea

CeliacMan2112

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CeliacMan2112 Rookie
CeliacMan2112
Posted

Hey, I was diagnosed with celiac like six months ago. I have been gluten free now since being diagnosed. The problem is I'm still having diarrhea. I was having it every single day like 6 times a day until recently I was put on Budesonide. That has slowed down or stopped the diarrhea, the problem is as soon as I stop taking the pills I start having diarrhea the very next day. I don't want to have to take the steroids for the rest of my life since they have side effects too. Any advice on this or please provide your perspective.

Thanks

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Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, CeliacMan2112 said:

Hey, I was diagnosed with celiac like six months ago. I have been gluten free now since being diagnosed. The problem is I'm still having diarrhea. I was having it every single day like 6 times a day until recently I was put on Budesonide. That has slowed down or stopped the diarrhea, the problem is as soon as I stop taking the pills I start having diarrhea the very next day. I don't want to have to take the steroids for the rest of my life since they have side effects too. Any advice on this or please provide your perspective.

Thanks

Are you 100% your gluten free? Like not eating outside of your house, not eating processed foods? Please read up on teh newbie 101 section for anything you might have missed like scratched dishes, crumbs in condiment jars, etc. Try removing all dairy, soy, and oats as these are common culprits that we develop issues with. https://www.celiac.com/forums/topic/91878-newbie-info-101/

Next up, keep a food diary, it is not uncommon to develop other food sensitives or intolerance issues. Limit your daily foods to just 3-5 ingredients a meal and record reactions and bowel habits and timing. Try to remove certain foods and eat the same foods for 3-5 days at a time rotating one in one out then trying them again. Point is to find patterns and foods that might make it worse, IE coffee, a spice, night shades, carbs, sugars. I found I work best on a no carb diet with a keto/paleo base but everyone is different.
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Next looking into digestive enzymes, If your not getting enough to digest your foods it can cause all kinds of issues.https://www.celiac.com/forums/topic/119919-digestive-enzymes/
 

I deal with mine and help by consuming 3000mg of potassium daily, and consuming foods with coconut flour like coconut flour porridge, baked goods etc. it tends to thicken up and give bulk to stool.

 

cyclinglady Grand Master
cyclinglady
Posted

What exactly do you eat?  Do you ever eat out?  Do you eat oats?  Have you tried the Fasano diet?  

Learn here:

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You joined in January.  Did you get an endoscopy?  Assuming you had one, other AI issues, like Ulcerative Colitis been ruled out?   If you never got that endoscopy and you are dietary compliant, consider getting one.  It might not just be celiac disease.  

Going on a steroid without a dietitian reviewing your diet or  attempting the Fasano diet seems pretty drastic.  

I am not sure I understand your situation or your whole story.  

 

  • 4 weeks later...
Ashish1988 Newbie
Ashish1988
Posted

Try having probiotic..

knitty kitty Grand Master
knitty kitty
Posted

I hope you are feeling better.  I experienced diarrhea for a long time.  It resulted in nutritional deficiencies.  My doctors overlooked simple vitamin deficiencies in favor of writing numerous, expensive prescriptions that never improved the symptoms.  

Deficiencies in certain vitamins, like Vitamin D, B12, thiamine and niacin, will actually cause diarrhea. 

Here's a list of vitamin deficiencies and their symptoms.

Open Original Shared Link

Hope this helps.

On 4/15/2018 at 6:57 PM, CeliacMan2112 said:

Hey, I was diagnosed with celiac like six months ago. I have been gluten free now since being diagnosed. The problem is I'm still having diarrhea. I was having it every single day like 6 times a day until recently I was put on Budesonide. That has slowed down or stopped the diarrhea, the problem is as soon as I stop taking the pills I start having diarrhea the very next day. I don't want to have to take the steroids for the rest of my life since they have side effects too. Any advice on this or please provide your perspective.

Thanks

 

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    • 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

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    • 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.
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