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

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

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

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

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

Jaysonguy Newbie
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
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
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    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

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.