Still frequent pooping (frequent Diarrhea) 8 years into diagnosis

[Ckluwho]

My son was Diagnosed at 15. Thank God, we figured it out. He grew 5 inches and gained 40 lbs that year. He’s now 24 but still poops frequently and gets diarrhea often. He tries to brush it off, he lives out of state going to school but of course I worry. Every time he visits he’s using the toilet frequently. What other foods should he stay away from? I’m worried there are other issues. Could it turn into chrones?

[trents]

Welcome to the forum, @Ckluwho!

Other autoimmune bowel diseases such as IBS and Crohn's are more common, statistically, in the celiac population than in the general population but it's not that they develop from celiac disease. It's just that autoimmune diseases tend to cluster. That is, when you develop one autoimmune disease you are likely to develop others, and not limited to bowel diseases, by the way.

Having said that, it is also common for celiacs to develop intolerances to other, non-gluten containing foods whose proteins may resemble the gluten protein. Chief among them are dairy, soy, oats, corn and eggs. But it can be almost anything in individual cases.

My biggest concern, however, is that your son may not be in total compliance with the gluten free diet. To eat truly gluten free is a challenge for any celiac but especially for busy students who may not be able to have total control over when, what and where they eat.

Edited December 21, 2023 by trents

[Scott Adams]

I agree, and it sounds like he needs to get back to the basics, but this can be hard for young people who might feel peer pressure and want to fit in. My kids both have gone through this, and still do at times (my oldest is 22 and youngest is 18), but both are doing better as they get older (and hopefully wiser!).

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Jeff Platt]

I was diagnosed as a celiac from genetic testing when I was 50, I carry all three genes. I didn’t know the first 50 years to eat a gluten free diet and thought everyone didn’t like food and had a variety of intestinal problems along with other issues caused by gluten. The last 10 years I have been strictly gluten free as a symptomatic celiac even staying away from any cross contamination as much as possible. My functional medicine physician has taken me off other dietary sensitive and inflammatory foods to see if my symptoms would improve and I still have diarrhea and other bowel issues to this day. I am still trying my best to find other foods etc. that make me symptomatic but am still a work in progress, maybe some of us will always be symptomatic?

[knitty kitty]

Hello, @Ckluwho and @Jeff Platt,

Diarrhea can be caused by an insufficiency of Thiamine.   I had diarrhea constantly until I corrected my Thiamine deficiency.  I took high dose Benfotiamine which has been shown to promote healing in the digestive tract. 

Nutritional deficiencies are common in Celiac Disease.  Many doctors don't recognize vitamin deficiency symptoms.  Correcting nutritional deficiencies is part of proper follow up care.  Blood levels can show vitamin levels within "normal" limits because the bloodstream is the transport system, but we can still have low vitamin levels stored inside organs and tissues where they do their work.  

Diarrhea prevents us from absorbing sufficient nutrients because our food moves too fast through the digestive tract.  It becomes a vicious cycle.  

Thiamine needs the other B vitamins and magnesium to make enzymes and energy which our bodies need to function correctly. 

Supplementing with Benfotiamine, a B Complex with all eight essential B vitamins, magnesium, and Vitamin D is beneficial while we are healing.

@Ckluwho,

I hope your son is not drinking alcohol.  Beer and liquor may contain gluten.  Alcohol consumption also inhibits the absorption of Thiamine.  

Has your son been checked for nutritional deficiencies?  There's some question in research as to Which comes first, thiamine deficiency or Inflammatory Bowel diseases (like Crones and ulcerative colitis) and autoimmune diseases.  

References:

B-vitamins, related vitamers, and metabolites in patients with quiescent inflammatory bowel disease and chronic fatigue treated with high dose oral thiamine

https://pubmed.ncbi.nlm.nih.gov/37880581/

...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

...

Aggravation of thiamine deficiency by magnesium depletion. A case report

https://pubmed.ncbi.nlm.nih.gov/4050546/

...

Micronutrient Deficiency in Inflammatory Bowel Diseases: Cause or Effect?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7212480/

...

Adjunctive therapeutic effects of micronutrient supplementation in inflammatory bowel disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10106602/

....

Nutrition, Nutritional Status, Micronutrients Deficiency, and Disease Course of Inflammatory Bowel Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10489664/

 

[lois k]

Hello I also suffer from diarrhea frequently and have been diagnosed with celiac for 10 years.  I do take Metamucil daily to slow down my bowel movements and form my stool.  I also now have high platelets 460 because of the inflammation in my body.  I am assuming it is my bowels from frequently going.  

[Ckluwho]

Thank you all so much! This has given me a lot to research. Thankfully he does not drink. We are members of the church of Jesus Christ of LDS, he even served a mission in Mexico and somehow survived without any bad flare ups there. But he does love his corn tortilla, beans, rice, tortillas chips, and spicy foods. Does he need to give that all up? He also is not very strict about sharing spaces with roommates who use gluten or eating at places where there could be some cross contamination or crumbs. I mean he does the best he can but it’s seems you’d have to be totally isolated to stay completely away from gluten. Could he be that sensitive?

[trents]

13 minutes ago, Ckluwho said:

Thank you all so much! This has given me a lot to research. Thankfully he does not drink. We are members of the church of Jesus Christ of LDS, he even served a mission in Mexico and somehow survived without any bad flare ups there. But he does love his corn tortilla, beans, rice, tortillas chips, and spicy foods. Does he need to give that all up? He also is not very strict about sharing spaces with roommates who use gluten or eating at places where there could be some cross contamination or crumbs. I mean he does the best he can but it’s seems you’d have to be totally isolated to stay completely away from gluten. Could he be that sensitive?

Yes, he could be. These are decisions he will have to make for himself. He might trial a period of more intense isolation to see if his symptoms improve and go from there.

[DebJ14]

On 12/27/2023 at 12:32 PM, Ckluwho said:

Thank you all so much! This has given me a lot to research. Thankfully he does not drink. We are members of the church of Jesus Christ of LDS, he even served a mission in Mexico and somehow survived without any bad flare ups there. But he does love his corn tortilla, beans, rice, tortillas chips, and spicy foods. Does he need to give that all up? He also is not very strict about sharing spaces with roommates who use gluten or eating at places where there could be some cross contamination or crumbs. I mean he does the best he can but it’s seems you’d have to be totally isolated to stay completely away from gluten. Could he be that sensitive?

Mexican food is my go to when eating out.  Just make sure the tortillas and chips are 100% corn.  The beans may or may not be gluten-free.  I buy gluten-free Charro beans at my local supermarket.  And rice is usually OK.  Sounds like your family needs to put some work into learning exactly which foods contain gluten and those that normally do not.  We vacation in Mexico because I know I will be less likely to get sick down there,

 

[Scott Adams]

Mexican food is also my favorite. I think in Mexico there is less risk of contamination with wheat because they stick to traditions more, but in the USA I've seen Tex-Mex style Mexican food at some restaurants that do some non-traditional things like using flour tortillas in enchiladas (I encountered this at a restaurant in Utah), wheat flour in mole sauce, some wheat flour mixed into the masa when making corn tortillas (my daughter's Mexican-American friend's family makes them this way), and wheat flour in red enchilada sauce (I've encountered this at several restaurants so I stick with the verde--green sauce).

It's always a good idea to talk to the restaurant owner or head chef and show them a restaurant card to make sure that there is no gluten used to make your food.

This article has some helpful info, and includes a Spanish restaurant card:

 

[TheFuzz]

I've lived with the same problem for years.  Recently I took a lactose tolerance test, and found I can't digest lactose.  I've been eating lactose free cheeses and milk, and went from needing the toilet up to 15 times a day down to 2.  Apparently lactose intolerance is pretty common with celiac.  Might be worth looking into it.

[lois k]

Thanks I will request a lactose test from dr.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

 

[DebJ14]

On 12/21/2023 at 9:31 AM, Ckluwho said:

My son was Diagnosed at 15. Thank God, we figured it out. He grew 5 inches and gained 40 lbs that year. He’s now 24 but still poops frequently and gets diarrhea often. He tries to brush it off, he lives out of state going to school but of course I worry. Every time he visits he’s using the toilet frequently. What other foods should he stay away from? I’m worried there are other issues. Could it turn into chrones?

We were lucky that our grandchildren were diagnosed young.  Our oldest grandchild was 3 when diagnosed.  He had never to that point even been on the growth chart.  He grew 2 inches and gained 6 pounds the first month he went gluten free and within his first 6 months he actually made it onto the growth chart.  His little brother was 7 months old when he was diagnosed.  He is the tallest one in our entire family.  He is taller than his parents who were both diagnosed when they were in their early 30's, and he towers over me.  I did not get diagnosed until I was 54.