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.

  • 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 commented on Scott Adams's article in Latest Research
      2
    2. - trents replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Blood tests low iGA 4 years later digestive issues

    3. - Mmoc posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Blood tests low iGA 4 years later digestive issues

    4. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,163
    • Most Online (within 30 mins)
      7,748

    Am77
    Newest Member
    Am77
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Mmoc! Please include the reference ranges for the IGA and the TTG tests in your next post if you have access to them. We cannot comment much otherwise as different labs use different reference ranges for these tests and also different units of measurement. There are no universal standards as of yet so the raw test numbers are not always helpful. Having said that, if your IGA (what we usually call "total IGA") is low, the TTG-IGA score will be skewed and cannot be trusted. Other kinds of tests for celiac disease would need to be run, particularly those in the IGG family of tests. Perhaps this will be helpful:  
    • Mmoc
      Hi there any advice welcomed. I have had 4 years of symptoms ranging from immune related anaphylactic symptom sudden onset food allergy to peppers/paprika/chilli/capsicum family derivatives. all these allergies fizzled out and following a food challenge test in hospital I reintroduced them a few months ago. Since then my digestive system is a mess. i have since noticed that 4 years ago when testing for iga allergies my iga level was .62 and my ttg was less than .1 (due to symptoms I was probably eating very plainly at that time). should I insist on being retested for celiac? I’ve since read two indicators for celiac include: sensitive to spicy foods when in flare up tooth enamel weakness and symmetrical discolouration patches on teeth which I have had since childhood on my two front teeth     thanks
    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
×
×
  • 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.