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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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