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gluten free and celiac worsens

tinyang27

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tinyang27 Newbie
tinyang27
Posted

I was diagnosed with celiac a few years back and not understanding the disease I continued to eat as I wished.  In November I became very ill and hospitalized where an EGd revealed an ulcer and my celiac had worsened so I started a gluten free diet.  I am now 100% gluten free and had an egd two weeks ago and my celiac continues to worsen.  My dr is frustrated along with my self because I know I have been following my diet.  Has anyone else experienced this and what has Dr's suggested doing.  Has anyone tried Celiact supplement.  

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cyclinglady Grand Master
cyclinglady
Posted
 

I was diagnosed with celiac a few years back and not understanding the disease I continued to eat as I wished.  In November I became very ill and hospitalized where an EGd revealed an ulcer and my celiac had worsened so I started a gluten free diet.  I am now 100% gluten free and had an egd two weeks ago and my celiac continues to worsen.  My dr is frustrated along with my self because I know I have been following my diet.  Has anyone else experienced this and what has Dr's suggested doing.  Has anyone tried Celiact supplement.  

I am sorry that you are still ill.  It can take years to recover from celiac disease because 1) the cure is based on the patient's adherence to a gluten free diet, 2) the gluten-free diet has a very steep learning curve (e.g. cross contamination) and 3) a damaged gut often can not process even gluten-free goods like corn, soy, lactose (intolerances may vary among celiac patients).  I think most folks here on the program take one to two years to heal.  

You can follow this gluten-free diet as recommended by celiac experts:

Open Original Shared Link

The diet is basically all whole foods that you prepare yourself.  No processed gluten-free foods.  

Keeping a food and symptom diary is helpful.  

There is no celiac supplement that will aid or prevent intestinal healing from celiac damage per all the leading researchers.  They are working on some drugs, but they are not available yet.  Best to really learn to go gluten free.  You may want to consider working with a dietitian who is really celiac-savvy.  

I am glad that you are taking better steps in improving your health!  

Need more help or support?  Talk to us!  

GFinDC Veteran
GFinDC
Posted

Right, there aren't any quick fixes to celiac disease.  It's really helpful theugh to eat a simple diet of home made food, and avoid eating out in restaurants for at least 6 months.  Cooking all your own food is helpful because you control the ingredients.

Recovery times vary a lot, but 2 weeks is not enough time by a long shot.  18 months to 24 months is probably more like it.  But the recovery time depends on how well you avoid any trace of gluten in your diet.  Even a crumb of gluten can slow down recovery.

  • 2 weeks later...
knitty kitty Grand Master
knitty kitty
Posted

Vitamin deficiencies may delay healing. Ask your doctor to test for deficiencies! 

Many Celiacs have poor absorption for an extended period of time and their vitamin stores get depleted.  Some vitamins can't be stored and must be absorbed every day. Yet with poor absorption, eating enough to make up for a deficiency is very difficult.  

Vitamin deficiencies can cause other health problems.  CyclingLady had anemia  due to a vitamin B12 deficiency.  I had a niacin deficiency that caused pellagra.  A deficiency of vitamin D causes depression.  Vitamin A deficiency causes nightblindness.  

Check with your doctor!

 

Livingnaturally Newbie
Livingnaturally
Posted

Hey! I'm sorry you feel so bad. That's never fun. It can take a long time to get relief on a gluten free diet for some, especially if you've had the condition for a long time or have a lot of damage. It's also pretty easy to think you're 100% gluten free when you're not. Try cutting out gluten free packaged foods and trying to eat whole foods. That way if you're having a reaction to tiny amounts of gluten (some react to the amount in packaged gluten free foods) then that should help. There could be an underlying condition like a bacterial overgrowth in your digestive tract. Something called small intestinal bacterial overgrowth is common in people with celiac disease. Vitamin deficiencies are common as well. Trying to focus on staying as healthy as possible and looking for common places you may still be getting sick is important, like from skin care products, packaged foods, eating out, sharing a kitchen with others who arent gluten free. All worth looking into! Good luck.  I know celiac disease can really be a struggle sometimes. You'll get healthy, try to look towards the future with positivity even though it seems hard to do right now :)

Elizabeth    

Jmg Mentor
Jmg
Posted

Lot's of good advice above. 

I can't say the science is definitive but google leaky gut and have a look at some of the recommendations around healing the gut: Open Original Shared Link 

Open Original Shared Link

I think there's some good advice there for coealiacs. 

I don't know if you enjoy cooking, but I made a lot of bone broths when I was trying to heal my gut. I've incorporated pro biotics, good fats, nutrient dense foods etc. I try to eat clean and keep gluten-free processed foods and grains to a minimum. 

Think of it another way. Your gut has been a battleground for many years. Even once the war is over the trenches won't repair themselves. Every meal is a chance to help that progress. 

Best of luck :)

cyclinglady Grand Master
cyclinglady
Posted
 

Lot's of good advice above. 

I can't say the science is definitive but google leaky gut and have a look at some of the recommendations around healing the gut: Open Original Shared Link 

Open Original Shared Link

I think there's some good advice there for coealiacs. 

I don't know if you enjoy cooking, but I made a lot of bone broths when I was trying to heal my gut. I've incorporated pro biotics, good fats, nutrient dense foods etc. I try to eat clean and keep gluten-free processed foods and grains to a minimum. 

Think of it another way. Your gut has been a battleground for many years. Even once the war is over the trenches won't repair themselves. Every meal is a chance to help that progress. 

Best of luck :)

Here is some of the "new"  science by Dr. Fasano (a leading celiac researcher) helping to validate "leaky gut":

Open Original Shared Link

I love this video too:

Your advice is excellent! 

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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.

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      Contact them.
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