Malignant Cancers are a Hidden Danger for Celiacs

Thankfully many younger people are being diagnosed without having to suffer for years or decades before doctors realize that celiac could be their issue. This should help to lessen the number of people with these types of serious complications.  The advice to get regular check ups and not ignore symptoms could be a lifesaver. Even if your only symptom is being unusually fatigued or unexpected weight loss it pays to not ignore it. Many of us late diagnosis folks have an aversion and distrust of doctors. I know I do and may now be paying the price.

@ravenwoodglass,

I do hope it's not come to that!  My heart goes out to you! 

There is a mounting body of evidence that high dose Thiamine (esp. Benfotiamine) can have anticancer effects.  

High Dose Vitamin B1 Reduces Proliferation in Cancer Cell Lines Analogous to Dichloroacetate

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/

And...

Thiamine mimetics sulbutiamine and benfotiamine as a nutraceutical approach to anticancer therapy

https://pubmed.ncbi.nlm.nih.gov/31810115/

Really hope this helps! 

Let me start by saying that I agree with your encouragement of celiacs to continue to get regular check ups with regard to their Celiac Disease and to be followed regularly by a physician knowledgeable in the care and treatment of the disease. It is very helpful and responsible for you to do remind everyone of the importance of such visits. 
 

I do take issue with a couple of things though. I have recently read articles from studies whose authors concluded the exact opposite of what you are saying about the incidence of cancers related to gluten damage in celiacs. The conclusions were that the incidence of these cancers is actually much less than originally thought and that the rate of these cancers was statistically insignificant when compared to the non-celiac study participants. While I agree that Celiac patients should continue to have regular follow ups, I do not agree with your scare tactics with out dated or misinterpreted information based on the small scale study you are reciting. People come here to find important information about their serious disease from your publication and expect that they are receiving accurate information but this article is not based on the latest evidence  being published based on scientific proof that is being shared by other publications. It seems that your goal here is to use a small scale study as a scare tactic which is irresponsible and quite offensive. Do better by looking at the entire scope of current research available on a topic rather than taking one small study and writing a quickly sourced inaccurate article. 
 

@Guest Interesting,

While you criticize Jefferson Adams' article here for citing outdated research with small sample sizes, you yourself fail to give any links to support your contrary claims. And I disagree with your contention that Jefferson uses "scare tactics". I also disagree with your claim that he is using outdated research in this article. The study he cites uses patient data from the period 2014-2021. That is not all that "dated" in my opinion. IMO, you come across as hostile in your reply and that is not appropriate.

On 5/8/2023 at 8:31 AM, Guest Interesting said:

Let me start by saying that I agree with your encouragement of celiacs to continue to get regular check ups with regard to their Celiac Disease and to be followed regularly by a physician knowledgeable in the care and treatment of the disease. It is very helpful and responsible for you to do remind everyone of the importance of such visits. 
 

I do take issue with a couple of things though. I have recently read articles from studies whose authors concluded the exact opposite of what you are saying about the incidence of cancers related to gluten damage in celiacs. The conclusions were that the incidence of these cancers is actually much less than originally thought and that the rate of these cancers was statistically insignificant when compared to the non-celiac study participants. While I agree that Celiac patients should continue to have regular follow ups, I do not agree with your scare tactics with out dated or misinterpreted information based on the small scale study you are reciting. People come here to find important information about their serious disease from your publication and expect that they are receiving accurate information but this article is not based on the latest evidence  being published based on scientific proof that is being shared by other publications. It seems that your goal here is to use a small scale study as a scare tactic which is irresponsible and quite offensive. Do better by looking at the entire scope of current research available on a topic rather than taking one small study and writing a quickly sourced inaccurate article. 
 

 

This study is less than a year old, and it consists of data that was taken over a seven year period. It's unclear whether the subjects in the study were following a strict gluten-free diet, but the reality is that many celiacs don't follow a strict diet, and many often cheat on their diets, or eat at restaurants where contamination is common.

Just curious, what regular checkups are necessary for someone with Celiac?   Are there specific tests that should be done yearly?  

The following blood tests (see list) are what are recommended in the UK, and should be available on the NHS after a coeliac diagnosis, but my experience was I was given these blood tests initially a bit more frequently (every six to nine months) following my diagnosis because I had anemia and odd liver function results at first. 

My consultant (I think in error, because he is a very thorough person normally) didn't initially order those marked with an asterisk* as a follow-up, but his colleague picked up on this about three years later and I get these tests every time now:

• full blood count
• calcium
• ferritin
• folate
• vitamin B12
• coeliac disease antibodies either tissue transglutaminase (tTG)*and/or endomysial antibodies (EMA)
• thyroid function tests*
• liver function tests.

The NHS should also provide an annual review where the consultant reviews these blood tests results with the patient.  Weight and height are monitored,  any new symptoms etc. 

A dietician is appointed when one is first diagnosed, with a follow-up, and then can be seen again if for any reason new symptoms appear.

A DEXA scan is usually ordered following diagnosis, with follow-ups, the ongoing surveillance determined on whether one has developed osteopenia or osteoporosis.  

Also, vaccination: some coeliacs may be more susceptible to complications of flu or COVID.  In the past few years I have been offered flu, pneumococcal and priority COVID jabs - see this link:

https://www.coeliac.org.uk/information-and-support/coeliac-disease/once-diagnosed/vaccinations/

I suspect the all above aftercare might vary depending on where the patient lives (what we call the 'postcode lottery' here in the UK).   

 I would say if anyone is reading this from the UK, do read what Coeliac UK have to say about all of this and if you are not being offered aftercare do look into it.   I have a good friend who didn't realise she was entitled the above and she lived in the same town as me - for some reason she had fallen off the list.

All information is welcome I would suggest that those who don’t agree take the time to consider all information. 
I certainly will. Thank you to all for your support. 
kind regards 

jo 

On 5/1/2023 at 3:37 PM, ravenwoodglass said:

Thankfully many younger people are being diagnosed without having to suffer for years or decades before doctors realize that celiac could be their issue. This should help to lessen the number of people with these types of serious complications.  The advice to get regular check ups and not ignore symptoms could be a lifesaver. Even if your only symptom is being unusually fatigued or unexpected weight loss it pays to not ignore it. Many of us late diagnosis folks have an aversion and distrust of doctors. I know I do and may now be paying the price.

I have had a very late diagnosis and am reluctant to trust any doctor as well. The problem is that I don't know what kind of doctor is well-versed in celiac enough to see. Though I think I am strictly gluten-free I still seem to have some symptoms and now have to worry about hidden malignancies that a doctor may not consider important because of my age.

I wonder if low vitamin D ubiquitous in Celiac Disease and reduced iodine intake might not have an underlying effect. The RDA for vitamine D is rediculously low, allowing only enough to prevent Rickets in children. It is estimated that 40% of adult Americans are low in vitamin D.  Since 1970 Iodine intake in the US, at least, has been cut in half, and cancer rates have doubled. Meanwhile, in Japan they average over 1000 mcg a day and the breast cancer rate is one half that of the US.

the average daily iodine intake in the United States was 216 mcg/day.   https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

in Japan, Zava and Zava determined that the average iodine intake, largely from seaweed, averaged 1000-3000 mcg/day   https://www.zrtlab.com/blog/archive/curious-about-iodine-1/#:~:text=In comparison to the RDA,mcg%2Fday [14].

This article hits home.

I was diagnosed late in life and I did have large B cell lymphoma.

On 5/9/2023 at 4:52 AM, cristiana said:

The following blood tests (see list) are what are recommended in the UK, and should be available on the NHS after a coeliac diagnosis, but my experience was I was given these blood tests initially a bit more frequently (every six to nine months) following my diagnosis because I had anemia and odd liver function results at first. 

My consultant (I think in error, because he is a very thorough person normally) didn't initially order those marked with an asterisk* as a follow-up, but his colleague picked up on this about three years later and I get these tests every time now:

• full blood count
• calcium
• ferritin
• folate
• vitamin B12
• coeliac disease antibodies either tissue transglutaminase (tTG)*and/or endomysial antibodies (EMA)
• thyroid function tests*
• liver function tests.

The NHS should also provide an annual review where the consultant reviews these blood tests results with the patient.  Weight and height are monitored,  any new symptoms etc. 

A dietician is appointed when one is first diagnosed, with a follow-up, and then can be seen again if for any reason new symptoms appear.

A DEXA scan is usually ordered following diagnosis, with follow-ups, the ongoing surveillance determined on whether one has developed osteopenia or osteoporosis.  

Also, vaccination: some coeliacs may be more susceptible to complications of flu or COVID.  In the past few years I have been offered flu, pneumococcal and priority COVID jabs - see this link:

https://www.coeliac.org.uk/information-and-support/coeliac-disease/once-diagnosed/vaccinations/

I suspect the all above aftercare might vary depending on where the patient lives (what we call the 'postcode lottery' here in the UK).   

 I would say if anyone is reading this from the UK, do read what Coeliac UK have to say about all of this and if you are not being offered aftercare do look into it.   I have a good friend who didn't realise she was entitled the above and she lived in the same town as me - for some reason she had fallen off the list.

Thank you Christina.  My Dr.  said all that you stated above as well,   but she feels we must include all vitamins and mineral tests be done each yr. You never know which vitamin or mineral will be an area of concern. My zinc went down considerably even though I'm in a strict no gluten diet for my Celiacs.  Yes, I occasionally eat out, only at places on my gluten-free App, but as we know cross contamination can happen, unless it's a gluten-free only restaurant. Plus, don't forget the wonderful colonoscopy lol. For me that's not yearly though. 

I had all the vaccinations you mentioned- even Shingles,  but had a very bad reaction to the Shingles vaccination- so that's of my list now. 

DEXA scan yrly as well.  

Love to read about what other Doctors are suggesting,  so thankful for this site!!