Cancer and type 1refractory celiac disease

[Rebecca Clayton]

Hi. I was diagnosed Sept 2021 with type 1 refractory celiac disease. This means that although I may be gluten free, the villi can't heal and the body continues to attack itself causing continuous inflammation.  After your recent article about increased risk of melanoma cancers with celiac disease,  does my condition make one even more susceptible to these cancers? Can anything be done to reduce the risk?Thanks and any information appreciated. 

 

 

[trents]

Rebecca, could you supply a link to the recent article about increased risk of melanoma cancers with celiac disease? Nothing turns up when I search our forum for "melanoma".

[knitty kitty]

I think this might be the article ...

 

[trents]

4 hours ago, knitty kitty said:

I think this might be the article ...

 

Yes, I was aware of that article but it does not cover melanoma: "The malignancies found by the team included small bowel adenocarcinoma, diffuse large B-cell lymphoma, carcinoma of the tongue, and colorectal carcinoma."

I was concerned the post might have been spam but when I googled a part of the post in quotes as Scott suggested, I did not find the posted text in another forum from which it could have been copied.

[knitty kitty]

@Rebecca Clayton,

Have you been checked for vitamin and mineral deficiencies?  

Sometimes subclinical vitamin deficiencies cause healing to take much longer.  Talk to your doctor and nutritionist about supplementing with the eight essential B vitamins, Vitamin D, and minerals like iron and magnesium.   Your nutritionist can help you to plan a nutrient dense diet.  

I followed the Autoimmune Protocol Diet (AIP diet). Designed by a Celiac doctor, the AIP diet has been scientifically shown to promote healing in the gastrointestinal tract.  

The AIP diet cuts out gluten free processed products.  Gluten free cookies and such are often high in fat and sugar, but devoid of nutritional value.  

Also, check for gluten in medications, skin and beauty products, and soaps and shampoos.  

 

[Rebecca Clayton]

8 hours ago, trents said:

Rebecca, could you supply a link to the recent article about increased risk of melanoma cancers with celiac disease? Nothing turns up when I search our forum for "melanoma".

Hmmm.... not sure how to do that on this forum thing! Saw it days ago on this celiac.com site. Maybe Scott can help?

[knitty kitty]

https://www.celiac.com/search/?&q=Melanoma&type=cms_records2&search_and_or=and

 

Was it one of those?

[Rebecca Clayton]

2 hours ago, knitty kitty said:

@Rebecca Clayton,

Have you been checked for vitamin and mineral deficiencies?  

Sometimes subclinical vitamin deficiencies cause healing to take much longer.  Talk to your doctor and nutritionist about supplementing with the eight essential B vitamins, Vitamin D, and minerals like iron and magnesium.   Your nutritionist can help you to plan a nutrient dense diet.  

I followed the Autoimmune Protocol Diet (AIP diet). Designed by a Celiac doctor, the AIP diet has been scientifically shown to promote healing in the gastrointestinal tract.  

The AIP diet cuts out gluten free processed products.  Gluten free cookies and such are often high in fat and sugar, but devoid of nutritional value.  

Also, check for gluten in medications, skin and beauty products, and soaps and shampoos.  

 

Thanks kitty kitty. Will try and get vitamin and mineral checks... all these diets sound great but have collagenous microscopic colitis as well. Such fun. Can't tolerate many healthy  veg - greens, butternut. They say potatoes are off the menu BUT there's blow all else I can eat. Rice can be an issue as there's probably instances of cross contamination in the factories.  Funnily though, seem to be able to tolerate some dairy now. Went through 2 bottles of A. Vogel MOLKOSAN about 6 months ago. Not sure if that helped? 

[knitty kitty]

@Rebecca Clayton,

Gee, Rebecca, Molkosan' label says it doesn't contain lactose.  Lactose is the sugar in dairy products that causes problems.  

Lactose intolerance in Celiac Disease is fairly common.  The tips of the intestinal villi produce an enzyme, lactase, that breaks down the sugar in dairy, lactose.In Celiac Disease, the villi are damaged and cannot produce the enzyme lactase, so the undigested milk sugar lactose passes deeper into the digestive system where bacteria feed on it and produce gas and diarrhea as byproducts.  

I've experienced lactose intolerance and I have an allergy to casein, one of the proteins in milk.  Casein protein resembles gluten protein, and can trigger the same reaction as if you've eaten gluten.

Whey is the other protein in dairy which can cause an allergic reaction in some.

I don't do dairy well myself.  I knew someone who had collagenous microscopic colitis and mainly consumed chocolate milk then wondered why she always felt so bad.  

I'm leary that continued consumption of dairy is going to gradually build up inflammation again, but....everybody is different.  

Maybe your lactase producing villi have healed a bit.  

Keep us posted.  

Have you tried the Autoimmune Protocol Diet?  It promotes healing in the gastrointestinal tract.   

 

[Rebecca Clayton]

4 hours ago, knitty kitty said:

@Rebecca Clayton,

Gee, Rebecca, Molkosan' label says it doesn't contain lactose.  Lactose is the sugar in dairy products that causes problems.  

Lactose intolerance in Celiac Disease is fairly common.  The tips of the intestinal villi produce an enzyme, lactase, that breaks down the sugar in dairy, lactose.In Celiac Disease, the villi are damaged and cannot produce the enzyme lactase, so the undigested milk sugar lactose passes deeper into the digestive system where bacteria feed on it and produce gas and diarrhea as byproducts.  

I've experienced lactose intolerance and I have an allergy to casein, one of the proteins in milk.  Casein protein resembles gluten protein, and can trigger the same reaction as if you've eaten gluten.

Whey is the other protein in dairy which can cause an allergic reaction in some.

I don't do dairy well myself.  I knew someone who had collagenous microscopic colitis and mainly consumed chocolate milk then wondered why she always felt so bad.  

I'm leary that continued consumption of dairy is going to gradually build up inflammation again, but....everybody is different.  

Maybe your lactase producing villi have healed a bit.  

Keep us posted.  

Have you tried the Autoimmune Protocol Diet?  It promotes healing in the gastrointestinal tract.   

To knitty kitty... there was no option on your last message to me re Molkosan etc. I hope you see this response. I was reluctant to try it as it said on box 'made from lactofermented whey, Molkasan assists in promoting better digestive health. Can be taken with probiotics. High in L(+) lactic acid and source of butyrate, essential fir healthy growth of intestinal  cells, protects against effects of gut inflammation,  supports the intestinal barrier, regulates intestinal motility and a beneficial support therapy during and after antibiotics. Helps relieve symptoms like bloating, cramping, flatulence,  constipation and diarrhoea. Beneficial for those who are lactose intolerant as L(+) lactic acid helps break down the protein and lactose in milk.'  I haven't had this for some 5 months now and still enjoy butter (and milk in my defac tea!!!) Yum yum. I hope you're right that the villi may be growing back. Miracles....

 

[trents]

6 hours ago, Rebecca Clayton said:

Hmmm.... not sure how to do that on this forum thing! Saw it days ago on this celiac.com site. Maybe Scott can help?

Just copy and paste the web page address into a new post window on this forum.

[Rebecca Clayton]

2 hours ago, trents said:

Just copy and paste the web page address into a new post window on this forum.

Hi trents. Nope, sorry can't.  I'm a wolly with these forums etc. The post was headed 'MALIGNANT CANCERS ARE A HIDDEN DANGER FOR CELIACS.' Posted by Jefferson Adams on celiac.com on 1st May. Apologies, there was no mention of melanomas as I'd thought but does mention other cancers in the post. Hope you find it!

[knitty kitty]

@Rebecca Clayton,

If you change your diet, the bacteria in the intestines change according to what one eats. Some bacteria feed on soluble fiber and make butyrate.  The AIP diet includes veggies with soluble fiber and some fermented foods with soluble fiber.  Adding these to the diet will help feed the butyrate producing bacteria in the gut.  

Seems like two different means, but the same end. You've taken the Molkosan and increased the butyrate producing bacteria, while I've gone the route of soluble fiber containing vegetables to help my bacteria.  

See, there's more than one way to skin a cat!   😸 

https://health.clevelandclinic.org/butyrate-benefits/