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

Gene Test Negative


lonewolf

Recommended Posts

lonewolf Collaborator

I just got a phone call from my doctor saying that the gene test from Kimball Genetics came back showing negative for both celiac genes. I guess this is good in terms of not having to worry about passing anything on to my kids. But I'm stumped. I really thought that celiac was the answer. Especially after reading so many stories about people having lots of cavities as children, being diagnosed with IBS, having thyroid problems, etc. - all things I have struggled with too. I know this isn't "all in my head" because the dietary challenge has proved to me that I need to avoid gluten, but I guess I just wanted something to call it. My naturopath must have been right years ago when she said that I had wrecked my digestive tract by overusing antibiotics.

Thanks for letting me blow off some steam.

Liz


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
I just got a phone call from my doctor saying that the gene test from Kimball Genetics came back showing negative for both celiac genes. I guess this is good in terms of not having to worry about passing anything on to my kids.

Don't forget that these are only two of the many genes that are implicated in celiac disease. These are only the two that are known about. 1-2% of biopsy proven celiacs have neither gene, and then there's the whole spectrum of "gluten intolerance" that doesn't show up positively (easily) on biopsies.

Guest nini

the gene test is not infallible... there are other genes for celiac that have not been identified yet... you may be one of those that has a different gene... In my opinion it's probably better (for you anyway) to just call it gluten intolerance and stick with that... It's a more accurate description of the condition than Celiac... what's Celiac anyway? :blink: Just kidding... There is still so much that is not known about Celiac and what causes it and wether or not someone has villi damage is supposed to be the defining line, but I don't buy it...

Remember there are BIOPSY PROVEN Celiacs that do not have the recognized genetic factors either, Eventually the genomes will be more accurately mapped and the experts will realize that there are more genetic markers for Celiac than they currently recognize. Just you watch!

Claire Collaborator

I know just how you feel. If I had to have anything I really wanted it to be celiac. It sounded a whole lot better than the other possibilities I was being threatened with!!!!!!!

I too was tested by Kimball. Unfortunately they do not do the 'gluten senstivity gene' test.

That is the next thing I have to do. You too, perhaps. Claire

Nantzie Collaborator

I did my genetic testing through Enterolab, and found out I have DQ1, which is not tested for by Kimball. It's not considered a celiac gene, but I have found that I just feel better mentally, physically and intellectually off of gluten. So I'm going gluten-free. My symptoms on gluten are headaches, body pain, nausea and stomach cramps, difficulty concentrating, irritable, anger, anxiety, insomnia. So not having the main genes doesn't exclude gluten as being a cause of problems. Just listen to your body. It's a healthy way to eat anyway.

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. - Known1 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      12

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

    2. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,360
    • Most Online (within 30 mins)
      7,748

    Known1
    Newest Member
    Known1
    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

    • Known1
      I live in the upper mid-west and was just diagnosed with marsh 3c celiac less than a month ago.  As a 51 year old male, I now take a couple of different gluten free vitamins.  I have not noticed any reaction to either of these items.  Both were purchased from Amazon. 1.  Nature Made Multivitamin For Him with No Iron 2.  Gade Nutrition Organic Quercetin with Bromelain Vitamin C and Zinc Between those two, I am ingesting 2000 IU of vitamin D per day. Best of luck, Known1
    • SilkieFairy
      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
×
×
  • 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.