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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    3. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    5. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,358
    • Most Online (within 30 mins)
      7,748

    Lorna Wynter
    Newest Member
    Lorna Wynter
    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

    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
×
×
  • 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.