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

Interesting Question About Diagnosis

Jaysonguy

Recommended Posts

Jaysonguy Newbie
Jaysonguy
Posted

Ok, I have a friend who may have Celiac disease.

The reason I say "may" is because she had the gene testing and they said she has one of two genes.

The doc says if she takes it again and only has one of two genes the doc is going to take her off a no gluten diet and let her eat everything.

Is this how it works?

Do you need both genes to really have it?

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

No, she does not need both genes for it. Just having the gene does not mean that you have Celiac. But, about 99% of people who have Celiac, have one or both of the genes (they are still trying to figure out if there are other genes involved).

The blood testing is usually the "first" step in diagnoses. There is the full Celiac panel (blood test) that needs to be run. Following that, some doctors will order an endoscopy/biopsy to document the damage done to the villi of the intestines (which is a hallmark sign of Celiac).

Hope this helps.

Rachel--24 Collaborator
Rachel--24
Posted

Having a gene doesnt mean you have, or will ever get, Celiac. Many many people carry a celiac gene and most of those people never actually end up developing the disease. Blood tests, biopsy and most of all response to diet are better indicators.

plantime Contributor
plantime
Posted

Why take her off a glutenfree diet? There's nothing unhealthy about it.

Jaysonguy Newbie
Jaysonguy
Posted
  • Author
No, she does not need both genes for it. Just having the gene does not mean that you have Celiac. But, about 99% of people who have Celiac, have one or both of the genes (they are still trying to figure out if there are other genes involved).

The blood testing is usually the "first" step in diagnoses. There is the full Celiac panel (blood test) that needs to be run. Following that, some doctors will order an endoscopy/biopsy to document the damage done to the villi of the intestines (which is a hallmark sign of Celiac).

Hope this helps.

Having a gene doesnt mean you have, or will ever get, Celiac. Many many people carry a celiac gene and most of those people never actually end up developing the disease. Blood tests, biopsy and most of all response to diet are better indicators.

Thanks you two, so is there a sure fire way to know if someone has Celiac?

Why take her off a glutenfree diet? There's nothing unhealthy about it.

No but it's not the easiest thing in the world for some people, I've been doing it for almost 2 years now but I'm also just really good at it lol plus I don't mind making my own food and never eating sandwiches because all the bread tastes like many of the filtered words here and that cereal from a main producer is next to impossible and........

lol

Life is easier if you don't have to plan around a problem.

Rachel--24 Collaborator
Rachel--24
Posted
Thanks you two, so is there a sure fire way to know if someone has Celiac?

A positive biopsy with flattened villi is a sure fire way to know. Positive IgA and tTG would also be "proof positive". Other than that I'd go with what my own body is telling me. Does she feel bad when she eats gluten? Does she feel better not eating gluten? That would be a pretty good indictator. I'm not sure how long shes been on the diet but Enterolab can do stool testing and still detect antibodies several months after eliminating gluten from the diet.

CMCM Rising Star
CMCM
Posted
Ok, I have a friend who may have Celiac disease.

The reason I say "may" is because she had the gene testing and they said she has one of two genes.

The doc says if she takes it again and only has one of two genes the doc is going to take her off a no gluten diet and let her eat everything.

Is this how it works?

Do you need both genes to really have it?

You don't need 2 genes to have it. I was told that having the gene means you have a "predisposition" to it, and that it would be better to not eat gluten. Remember that there is a segment of those with celiac who have what is called "silent celiac" disease. They have no observable symptoms but intestinal damage is still occurring.

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

Celiac.com Sponsor (A8-M):


tiredofdoctors Enthusiast
tiredofdoctors
Posted

I would think that her doctor would order the "standard" tests before taking her off the gluten-free diet. Antigliadin, Antitransglutaminase and Antiendomysial antibodies, and then a small intestine biopsy. I think taking her off a gluten-free diet based solely upon genetic testing could be a big mistake.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in ...
    2. Scott Adams
      - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also ...
    3. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Healthy Gluten Free Foods low sugar that you found?

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those...
    4. Scott Adams
      - Scott Adams replied to lizzie42's topic in Traveling with Celiac Disease
      1

      Trip to Anaheim/Disney

      This article is a few of years old, but my still be helpful.
    5. trents
      - trents commented on Scott Adams's article in Winter 2026 Issue
      14

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      This is likely dependent on the sensitivity of the individual celiac.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,242
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    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

    • Scott Adams
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Scott Adams · Posted

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      Low iron and vitamin d

      By Scott Adams · Posted

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. 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. This article has more info:    
    • Scott Adams
      Healthy Gluten Free Foods low sugar that you found?

      By Scott Adams · Posted

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
    • Scott Adams
      Trip to Anaheim/Disney

      By Scott Adams · Posted

      This article is a few of years old, but my still be helpful.  
    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
×
×
  • 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.