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

Question Re: Family History And Doctors Comments


young5849

Recommended Posts

young5849 Newbie

Hi--I do not have celiac, but my mother did. My mom died 10 yrs ago with cancer, she first had cancer in the small bowel, which was removed with surgery, and chemo kept it clear for about 4-5 years. Then she developed a blockage in her duodenum, that turned out to be cancer and she died with that.

Here is my issue: Yesterday, I saw a new doctor for unrelated issues, and when we did the history and I told her my mom had cancer twice (I used the word lymphoma), and that it was caused by the fact that she was an undiagnosed celiac .... until her first cancer biopsy. Thus destruction of the digestive system, leaves a fertile ground for cancer. The doctor said that, research now shows the cancer is unrelated to the celiac and I should be worried about it as a family history --genetic--- thing. OR she said really my mom may not have had cancer and she really had blockages caused by the celiac.

So I am confused, I understand that research has progressed, since my mom was alive but I really am on top of our family medical history (I think?). So anyone have any comments or information on this?


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



Celiac.com Sponsor (A8-M):



AmandaD Community Regular

That's funny you discuss this.

After I was diagnosed by biopsy a few weeks back with Celiac - my childhood pediatrician (friend of my family's) called me and said something similar - that they're linking lymphoma is less and less connected with actual Celiac - in fact, the scientists aren't a hundred percent sure if it's just that they see more intestinal lymphoma in a Celiac patient because Celiac's are inherently seeing the g.i. doc more often...I hope that makes some sense...but what you talk about is interesting.

May I ask who your doctor is and through what medical system?

Hi--I do not have celiac, but my mother did.  My mom died 10 yrs ago with cancer, she first had cancer in the small bowel, which was removed with surgery, and chemo kept it clear for about 4-5 years.  Then she developed a blockage in her duodenum, that turned out to be cancer and she died with that. 

Here is my issue:  Yesterday, I saw a new doctor for unrelated issues, and when we did the history and I told her my mom had cancer twice (I used the word lymphoma), and that it was caused by the fact that she was an undiagnosed celiac .... until her first cancer biopsy.  Thus destruction of the digestive system, leaves a fertile ground for cancer.  The doctor said that, research now shows the cancer is unrelated to the celiac and I should be worried about it as a family history --genetic--- thing.  OR she said really my mom may not have had cancer and she really had blockages caused by the celiac.

So I am confused, I understand that research has progressed, since my mom was alive but I really am on top of our family medical history (I think?).  So anyone have any comments or information on this?

<{POST_SNAPBACK}>

young5849 Newbie

She is a gynechologist (sp?) in New York State. USA. Is that what you mean by who the doctor is?

skbird Contributor

Interesting - well if lymphomas are genetic and Celiac is genetic, maybe they are related on that level? So possibly not caused by Celiac but genetically predisposed to both? Or people who have both in their family are just doubly unlucky?

Interesting...

Stephanie

Merika Contributor

My grandmother had (and died of) those same blockages you talk of, at least I'm pretty sure that's the kind of blockage it was. She was undiagnosed celiac. She didn't have cancer though.

I think there is so much they don't know about celiac, and I think we'll all be learning a lot more about it in the next 50 years, now that actual research money and (some) public interest is going into it.

Merika

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.