Refractory celiac disease, unresponsive celiac, and exocrine pancreatic insufficiency

[Maureen Sullivan]

Good morning all!

I was initially diagnosed as gluten sensitive with a subsequent diagnosis of actual celiac disease about 6 months later.  The diagnosis is based on biopsied moderate damage to the villi in the small intestine and genetic testing (positive for DQ2).  I have always had GI issues, but they worsened significantly in 2018 at age 60 with tremendous weight loss (at least 30 lbs. overall since then and still loosing).  I have been on a very strict Gluten-free diet since January of 2020 with worsening of symptoms.  An additional diagnosis of Exocrine Pancreatic Insufficiency (EPI was made about 9 months ago.)  I am very undernourished, vitamin deficient (fat soluble vitamins), have osteoporosis, daily diarrhea, and cannot put on any weight and have difficulty maintaining my current 82 lbs.

Has anyone else experienced this type of severity and lack of responsiveness to the gluten-free diet?  The gluten-free diet has alleviated by fatigue and brain fog, but otherwise I've had little symptom relief and in fact worsening.  I am currently set up for scopes with biopsy, capsule endoscopy, and MRI to further investigate/rule out refractory celiac, lymphoma. 

Just wondering if anyone else had experienced similar issues, may have some information to shed light to the picture.  I am on vitamin supplementation, Creon (pancreatic enzyme), B12 injections every 2 weeks, and a couple of things for the diarrhea that are bandaids.  In addition to the gluten-free diet, I am allergen free in my cooking/eating for eggs, dairy, soy, shellfish, peanut butter, and rarely have alcoholic beverages.  I stay away from high fiber foods and raw vegetables.  

Thank you for any insight anyone may be able to share!

MS

[Wheatwacked]

Welcome to the forum Maureen. The answer to your first question, "has anyone else?" is easy. Yes. You are not alone.

Celiac Disease is a disease of malabsorption. The villi are damaged by an autoimmune response to gluten so vitamin deficiencies is the norm, depending on how long. And that vitamin deficiency caused by Celiac Disease has led to your diagnosis of EPI. 

You might try a multivitamin like Geritol Multivitamin because it has 100% or more of the RDA for most of the essential vitamins. 100% RDA is the minimum healthy individuals need to stay healthy. With Celiac Disease absorption is impaired so in order to heal you need more. 

Exocrine Pancreatic Insufficiency and Malnutrition

Quote

Exocrine pancreatic insufficiency was diagnosed in 84.6% (77/91) of patients based on symptoms of bloating, steatorrhea, or weight loss. Of these patients, 35.2% (19/54) had vitamin A deficiency, 62.5% (55/88) had vitamin D deficiency, and 17.7% (9/51) had vitamin E deficiency. Either osteopenia or osteoporosis was found in 68.9% (3¼5). A medium or higher risk for malnutrition based on Malnutrition Universal Screening Test score of 1 or higher was found in 31.5% (28/89). Malnutrition Universal Screening Test score of 1 or higher was associated with an increased risk for osteopenia and osteoporosis on Fisher’s exact test (P = 0.0037).   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6462188/

Some things jump out.

More vitamin D is better. Raising your vitamin D blood plasma to around 80 ng/ml. For me that requires me to take 10,000 IU of D3 a day. At that daily amount it still took 6 years but the mood benefits started the first week and is holding steady now.  Cleveland Clinic: Vitamin D

Thiamine B1 is critical in pancreatic function. The simplest test is to take more than 300 mg a day to see your response. 

You are avoiding eggs. There is a connection between choline and chronic B12 deficiency. Choline is needed to process fat. The recommended range is 450 mg to 3000 mg a day. That is the equivalent of 4 eggs, or 15 ounces of steak or 10 cups of cooked broccoli every day just for the minimum. Advances in Nutrition: Choline

[Scott Adams]

Welcome to the forum. 

The average time for those with celiac disease to heal is around 2 years, but this is heavily dependent on whether or not your diet is 100% gluten-free, so be sure to look at this closely, especially if you eat outside your home, for example at restaurants.

This category is where we've summarized many of the scientific publications on refractory celiac disease, so you may want to read through some of these:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/ 

[knitty kitty]

Hi, Maureen!

There are eight B vitamins, of which B12 is just one.  The eight essential B vitamins all work together interdependently.  You may find taking a B Complex that includes all eight B vitamins would be more beneficial than just the B12 shots.  

"Effect of thiamin deficiency on pancreatic acinar cell function"

https://pubmed.ncbi.nlm.nih.gov/6180623/

See the links to similar studies at the bottom of the page.  Riboflavin, Folate and Niacin (Vitamins B2, B9, and B3) also affect the pancreatic function.

It's rare to have a deficiency in just one vitamin.  There's eight water soluble B vitamins and four fat soluble vitamins.  It's most likely you're deficient in all the B vitamins and Vitamin C, as well as the fat soluble vitamins, Vitamins A, D, E, and K, and various minerals.  Malabsorption of vitamins and minerals is common in newly diagnosed Celiac Disease.  The small intestine where vitamins are usually absorbed is damaged in Celiac Disease.  Supplementing with a B Complex supplement while healing will help.

 

Edited April 1, 2022 by knitty kitty
Typo correction

[Maureen Sullivan]

On 3/30/2022 at 7:51 AM, Maureen Sullivan said:

Good morning all!

I was initially diagnosed as gluten sensitive with a subsequent diagnosis of actual celiac disease about 6 months later.  The diagnosis is based on biopsied moderate damage to the villi in the small intestine and genetic testing (positive for DQ2).  I have always had GI issues, but they worsened significantly in 2018 at age 60 with tremendous weight loss (at least 30 lbs. overall since then and still loosing).  I have been on a very strict Gluten-free diet since January of 2020 with worsening of symptoms.  An additional diagnosis of Exocrine Pancreatic Insufficiency (EPI was made about 9 months ago.)  I am very undernourished, vitamin deficient (fat soluble vitamins), have osteoporosis, daily diarrhea, and cannot put on any weight and have difficulty maintaining my current 82 lbs.

Has anyone else experienced this type of severity and lack of responsiveness to the gluten-free diet?  The gluten-free diet has alleviated by fatigue and brain fog, but otherwise I've had little symptom relief and in fact worsening.  I am currently set up for scopes with biopsy, capsule endoscopy, and MRI to further investigate/rule out refractory celiac, lymphoma. 

Just wondering if anyone else had experienced similar issues, may have some information to shed light to the picture.  I am on vitamin supplementation, Creon (pancreatic enzyme), B12 injections every 2 weeks, and a couple of things for the diarrhea that are bandaids.  In addition to the gluten-free diet, I am allergen free in my cooking/eating for eggs, dairy, soy, shellfish, peanut butter, and rarely have alcoholic beverages.  I stay away from high fiber foods and raw vegetables.  

Thank you for any insight anyone may be able to share!

MS

Thank you Wheatwacked, Mr. Adams, and Knitty Kitty for sharing your knowledge and the information you provided.  I will certainly read as much as I can of the scientific data to become more informed about what's happening with me.  I know it will be very helpful!  Fortunately, I am on a journey that includes some of the suggestions you all made.  Again, thank you for your help!

MS