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

Identical Twins -- Only One Twin Is Celiac

remedios

By remedios
in Related Issues & Disorders

Recommended Posts

remedios Newbie
remedios
Posted

Hi to you all,

A recent DNA test of my twin and me showed that we are identical, even though we are not exactly identical in height and a few other features. I am a celiac and my twin is not. My twin is more than an inch taller than I am and has better eyesight -- specifically, I have an astigmatism in one eye, and she has perfect vision. My twin has a perfectly normal digestive system, but like me, she has significant reactions to airborne allergens including pet dander, pollen, ragweed, and some perfumes and fabric softener.

I didn't realize that I had celiac disease until I was well into my twenties, despite suffering a range of severe symptoms from childhood. I'm sure that the height and eyesight differences between my twin and me are the result of my undiagnosed celiac disease from my early years to mid 20s.

I'm from a large family of nine children, and at least two of my other five sisters have celiac disease as well. Neither of my two brothers seems to have celiac disease. I would love to talk to someone who is familiar with this topic. Is it likely that my twin has an asymptomatic celiac condition? Are our respiratory allergies related to the celiac condition?

Thanks for any input!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

For me respiratory allergies were definately connected but I can't say they will be for all.

Celiac requires a trigger to rear it's head, you have apparently had that trigger but your twin has not. Your twin should be on guard and should at least get the blood test periodically. There are folks that are celiac that are asymptomatic, or seem to be. Celiac can be more than just a gut a disease, some will have neuro effects like depression and anxiety, some will have bone and joint issues, some will have skin issues, some will have the gallbladder or thyroid effected and all can show up before the typically recognized gut issues show as much more than what is thought to be an occasional problem.

I hope you heal quickly and welcome.

Tallforagirl Rookie
Tallforagirl
Posted
Celiac requires a trigger to rear it's head, you have apparently had that trigger but your twin has not. Your twin should be on guard and should at least get the blood test periodically. There are folks that are celiac that are asymptomatic, or seem to be.

The chance for your twin developing celiac disease is around 70 per cent, so I agree with ravenwoodglass, it's a good idea for your twin to get retested periodically.

Conversely, there's also 30 per cent chance your twin won't get it.

remedios Newbie
remedios
Posted
  • Author

Thanks to you both for the replies. I have heard this 70/30 breakdown before, but just by hearsay. What's the source for this statistic? And if you have the answer to that question... can you point me to a blog or periodical that discusses primarily Celiac disease and topics like it with a scientific or medical emphasis?

I'm also interested to see if there's a connection between MS and allergies. My family has a history of MS, and I've seen that trend in some of the other discussions. Since celiac and MS are both auto-immune diseases, maybe they're connected... or maybe it's just a coincidence.

Thanks again!

lovegrov Collaborator
lovegrov
Posted

I don't know about the 70/30 breakdown but there are any number of people who have the gene but never develop celiac. No one is real sure exactly why some develop and others don't.

richard

Nancym Enthusiast
Nancym
Posted

Ah, you should watch this video, it'll explain why identical twins aren't really identical, and get less identical as they get older. It's because of something called epigenetics.

Open Original Shared Link

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.