Eeating gluten-free but still have diarrhea

[Sundy Ward]

Diagnosed a year ago. Completely gluten-free. Dr has prescribed Bedestide for diarrhea. Works great . After my 3rd prescription he wouldn't prescribe anymore. I am back to square 1 with diarrhea, nausea, and no appetite. I have removed all gluten from the house. Only one loaf of wheat bread in freezer for my husband. 2 toasters. 2 ea of mayo, butter, peanut butter so no cross contamination. My Glutten level started at 250 and down to 141 in 8 months. Only thing I consistently intake everyday is coffee and my medications and supplements, which are gluten-free. Don't know about the drugs. Have a cat. Cat food? Any insights. I'm at whits end. 

[trents]

Welcome to the forum, @Sundy Ward!

Are you still eating oats (even gluten free oats) and dairy products? The proteins in these foods and others such as eggs, soy and corn closely resemble that in gluten and many celiacs must also eliminate them from their diets. Start with dairy.

When you say your "gluten levels" are down to 141 I assume you mean your tTG-IGA levels are down? Those tests measure antibody levels, not gluten levels. Sometimes it takes two or three years for antibody levels to return to normal but you are making progress. It is certainly possible that some other food ingredient intolerance besides gluten is causing your diarrhea. 

Studies show that most people who believe they are eating gluten free are actually practicing a lower gluten diet. I offer this link for your review: 

 

 

[Scott Adams]

In some people with celiac disease it can take a long time for tTg levels to normalize, even if the are 100% gluten-free. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

• Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

Quote

After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

 

 

[Wheatwacked]

On 1/17/2024 at 5:44 PM, Sundy Ward said:

I am back to square 1 with diarrhea, nausea, and no appetite.

Increase your Choline.  Eggs, liver, beef or boost intake with choline in a bottle.  Linus Pauling Institute: Choline although there are other vitamins that will cause it, 90% of western world does not have adequate intake.

I've recently upped my iodine to 500 mcg - 1200 mcg a day by taking 10 to 20 drops of Strong Iodine in any drink.  Seems to be helping my intolerance of ambient temps below 78, cold toes, non healing sebacious cyst, strength, brain fog and apetite.  I get anorexic often.

Your medications could be causing it.  There are many reasons so you just have to start with the easy ones.  

 

[knitty kitty]

Welcome to the forum, @Sundy Ward!

Sorry you are still experiencing problems.  

Diarrhea can result in malabsorption of essential vitamins and minerals.  Taking vitamin and mineral supplements can boost your ability to absorb these essential nutrients.  Are you taking a B Complex, Vitamin D, and magnesium?  Have you been checked for nutritional deficiencies?

A gluten free diet that leans heavily on gluten free processed foods can also cause digestive problems.  Gluten free processed foods are not required to be enriched with vitamins and minerals like gluten containing counterparts.  Gluten free processed foods also contain gums that can be hard to digest. 

I found a Paleo diet very helpful in reducing diarrhea and inflammation.  A Paleo diet helps starve out the carbohydrate loving bacteria that can move into the small intestine causing Small Intestinal Bacterial Overgrowth -SIBO.  

Which supplements and medications are you taking?

[Beverage]

I reacted to Bob's gluten free oats. I can eat purity protocol oats, but some Celiacs cannot eat oats at all.

Definitely pets, they lick themselves all over, then you pet them. Oops.. There are many good grain free pet foods available. 

Also any home remodeling going on? I got sick from old plaster, which apparently can contain wheat paste.

[Sundy Ward]

Thanks! 

[nb888]

I had similar issues. In addition to being a celiac I can't eat oats of any kind, maltodextrin and foods that have been packaged in an environment where other gluten containing foods have also been packaged, eg a lot of spices and some herbs, because I have a high sensitivity to low quantities of gluten. I also found out a lot of medicines use gluten trace containing ingredients which are not labelled or marked in any way and so there is no real way of knowing what is safe and what isn't if you are sensitive... I am in the UK and food labelling standards may vary in your country. We have a 20ppm guideline for what can be labelled "gluten free" in reality there is no way of measuring the ppm in food accurately without significant testing so even if food is labelled gluten free and you are sensitive you may still get symptoms..  in reality unless you live 100% off what you personally grow / cultivate on your own land you will be exposed to gluten in some way.

In the end after a lot of back and forth and talking with an NHS dietician I was put onto a low fodmap diet for 6 - 8 weeks which after a lot of trial and error and experimentation finally helped to start eliminate the gassiness and stomach issue which even a gluten free diet and the removal of the above foods did not help with. Low fodmap means certain foods are green (ok to eat), amber (ok in small quantities) and red (avoid).  It is still up and down as the slightest re-introduction of the red foods can cause issues, things like raw onions are especially bad for this, so getting the balance right will be something that I will have to work on for a long time.