Embarrassing Coeliac Disease Symptoms

[Wendy wilby]

I have suffered with coeliac diagnosed desease for 10 years i am 64 years old. I follow a strict gluten free diet but have just been diagnosed with severe malabsorbtion as i have had crippling diarrhoa for 10 years and nothing improves it some days i never leave my home as i am too worried especially if where i am going has only 1 toilet as the noise and the smell is so embarrassing

[Scott Adams]

Is your diet 100% gluten-free? If you eat at restaurants probably not. 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.):

   Your doctor should also evaluate you for refractory celiac disease, as this can be a more serious condition, although it can be tied in some cases to non-compliance with a gluten-free diet. 

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.

This article may be helpful:

 

 

 

[Molerey]

Hi Wendy,

I'm truly sorry to hear about your ongoing struggles and the recent diagnosis of severe malabsorption. It sounds like you've been through a lot, and it's understandable how such experiences could significantly impact your quality of life.

Given your strict adherence to a gluten-free diet yet still facing such severe symptoms, it might be worth exploring additional dietary triggers beyond gluten. Scott's advice on considering refractory celiac disease is crucial, but alongside that, investigating other potential food sensitivities could provide some relief. Foods that are high in FODMAPs (fermentable oligo-, di-, mono-saccharides, and polyols) can sometimes cause symptoms similar to those you're describing, even in individuals who strictly avoid gluten.

A low FODMAP diet, which restricts foods that are difficult to digest and are known to cause gas, bloating, and stomach issues, might be beneficial to try under the guidance of a healthcare professional or dietitian familiar with celiac disease and food intolerances. This diet isn't meant to be long-term but could help identify if there are other foods contributing to your symptoms.

Additionally, ensuring that your nutritional intake is optimized through supplements might be necessary, considering the malabsorption issues. Vitamins and minerals that celiac sufferers are often deficient in include iron, calcium, magnesium, vitamin D, and B vitamins. A healthcare provider can offer guidance on testing for deficiencies and recommend appropriate supplements.

Sending you strength and hope that you find a path to improved health soon.

[Mari]

In the United States there is a laboratory  - Genova Diagnostics, that offers very complete fecal examinations. I asked a Dr. to order a fecal test from them and they sent me a collection kit with dry ice. I collected the sample and sent it back the same day with UPS. The report was extensive and picked up a parasite and an intestinal pathogenic bacteria. I was in my 70s and had been gluten-free for about 6 years with some problems persisting. I have also used elimination diets. The first time I started with just rice and lamb but after a while I could eat foods that I knew were OK and eliminate foods that seemed to be causing intestinal problems. I wish that I had done that with hot peppers. I knew I reacted to hot peppers like in Mexican food with grossly swollen lips but kept eating commercial mayonnaise with a little  paprika. Just last year I stopped eating mayo and am much more comfortable with less intestinal inflammation.

[TheFuzz]

I just went through something similar.  Turns out I am also lactose intolerant, and that was the source of all the bathroom trips.  I did a lactose tolerance test that flagged it.  It took a couple weeks of no dairy before I got back regular.  I now have lactose free dairy and it has been fine for me.  The lactose enzymes don't work reliably for me though.  Maybe see if your doctor can get you the test, or just give it a try.  I always like to have real test results before starting so there is less guessing, and dairy is one of the few food tolerances you can actually test for.

[Wendy wilby]

On 2/12/2024 at 10:58 AM, Molerey said:

Hi Wendy,

I'm truly sorry to hear about your ongoing struggles and the recent diagnosis of severe malabsorption. It sounds like you've been through a lot, and it's understandable how such experiences could significantly impact your quality of life.

Given your strict adherence to a gluten-free diet yet still facing such severe symptoms, it might be worth exploring additional dietary triggers beyond gluten. Scott's advice on considering refractory celiac disease is crucial, but alongside that, investigating other potential food sensitivities could provide some relief. Foods that are high in FODMAPs (fermentable oligo-, di-, mono-saccharides, and polyols) can sometimes cause symptoms similar to those you're describing, even in individuals who strictly avoid gluten.

A low FODMAP diet, which restricts foods that are difficult to digest and are known to cause gas, bloating, and stomach issues, might be beneficial to try under the guidance of a healthcare professional or dietitian familiar with celiac disease and food intolerances. This diet isn't meant to be long-term but could help identify if there are other foods contributing to your symptoms.

Additionally, ensuring that your nutritional intake is optimized through supplements might be necessary, considering the malabsorption issues. Vitamins and minerals that celiac sufferers are often deficient in include iron, calcium, magnesium, vitamin D, and B vitamins. A healthcare provider can offer guidance on testing for deficiencies and recommend appropriate supplements.

Sending you strength and hope that you find a path to improved health soon.

Thankyou so much i will take your advice