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

Confused Please Help

suecosgrove

Recommended Posts

suecosgrove Newbie
suecosgrove
Posted

I have had constant nausea since christman. My gastroenterologist did an endoscope and colonoscomy. He said the biopsy in my dude emu showed damage and told me I had celiac disease. He also did a genetic test on me that day. Now three weeks later and much money invested in gluten-free items he calls and says My test is negative. What does this even mean??

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

Celiac.com Sponsor (A8-M):


cavernio Enthusiast
cavernio
Posted

So he called and said your genetic test was negative? Or was he saying he was actually wrong about your duodenum being damaged?

If he had your duodenum test wrong, or accidentally messed up your results with someone else's or something, then you don't have celiac disease.

If he called and said your genetic test was negative, I would still think you have celiac disease.

Most, not all, people with celiac disease apparently have a specific genetic problem that makes them prone to getting it. However, there exist people who do not have that gene/set of genes who still do develop celiac disease. IIRC, the wikipedia article actually says only 90% of people have the standard 'celiac' gene. They also list a couple of other genes that are known to cause celiac disease. I wouldn't be surprised if the lab/doctors didn't bother testing for those less common genes. (I'm actually rather surprised they did genetic tests for you at all, my doctors won't do that for me, even though I've asked about getting it.)

However, there's still the possibility you don't have celiac disease. There's something called tropical sprue which manifests like celiac disease in that it causes your villi in your intestines to disappear/become damaged, but which I don't believe is caused by gluten. The prognosis for that is not good however, they know even less about that than celiac disease.

Do you feel better not eating gluten? If the answer is at all yes, then you should continue being gluten free. Well, you should continue being gluten free regardless.

There's also a possibility that you have a candida problem. Note that intestinal candida is not a diagnosis most doctors think exist. Or they only think it exists in very sick people like AIDS patients.

Talk to the doctor again if you can.

dilettantesteph Collaborator
dilettantesteph
Posted

There are some genes recognized to cause celiac disease in Europe which are not tested for here. A negative genetic test doesn't mean that you don't have the disease. See if your symptoms clear up on the gluten free diet. If you eat more whole foods (produce and meat) it is less expensive and more healthy.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

In a lot of the literature they say DQ2 and DQ8 are the Celiac genes. Many dr.s thing they can rule out Celiac if you don't have those. They have found there are other genes that also can mean Celiac.

Since you have the damage in your duodenum, it would be a good idea for you to stay gluten-free.

Soo..did the Dr. say what caused your damage if it's not celiac?

Kansas Rookie
Kansas
Posted

I tested negative to the gene testing, but definitely am gluten intolerant. I agree with the others, if you feel better without gluten, stay on the diet.

mushroom Proficient
mushroom
Posted

If you are biopsy positive, you are celiac. Period. Doesn't matter a hoot about the genes. :)

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. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance nor a dairy allergy. Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy....
    2. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    3. Scott Adams
      0

      Can Your Gut Microbiome Predict Celiac Disease Years in Advance?

    4. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      Hi @knitty kitty Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially w...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      43

      My journey is it gluten or fiber?

      I have taken the vitamins for a week. Haven't noticed any major changes but I will give it more time to see.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,100
    • Most Online (within 30 mins)
      7,748
    BothySmithy
    Newest Member
    BothySmithy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      Insomnia help

      By trents · Posted

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I have taken the vitamins for a week. Haven't noticed any major changes but I will give it more time to see.
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
×
×
  • 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.