Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Cancer and type 1refractory celiac disease

Rebecca Clayton
 Share

Recommended Posts

Rebecca Clayton Apprentice
Rebecca Clayton
Posted

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. 

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

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 Grand Master
knitty kitty
Posted

I think this might be the article ...

 

trents Grand Master
trents
Posted
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 Grand Master
knitty kitty
Posted

@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 Apprentice
Rebecca Clayton
Posted
  • Author
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 Grand Master
knitty kitty
Posted

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

 

Was it one of those?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rebecca Clayton Apprentice
Rebecca Clayton
Posted
  • Author
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 Grand Master
knitty kitty
Posted

@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 Apprentice
Rebecca Clayton
Posted
  • Author
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 Grand Master
trents
Posted
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 Apprentice
Rebecca Clayton
Posted
  • Author
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 Grand Master
knitty kitty
Posted

@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/

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      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: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.