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

Genetic Testing

SPinch03

Recommended Posts

SPinch03 Apprentice
SPinch03
Posted

Hello everyone!! Still on my journey to figure out what's going on with me! I've had a positive gliadin IgG test, negative gliadin IgG, Negative tissue transglutaminase IgG/IgA... Negative biopsy, it showed inflammation and lymphocytes infiltrating the epithilium but no issues with the villi... After I went gluten free for a month and felt great... Reintroduced and all my aches pains and respiratory issues came back I didn't think I had any GI issues but when I reintroduced I realized it made me constipated.... Now I had the genetic testing done and my HLA-DQB1*02 and HLA-DQB1*03:02 were negative but HLA-DQA1*05 is positive. Report says this is rarely observed in individuals with celiac and that it is only mildly supportive of a clinical diagnosis of celiac disease..... I know I should just go gluten free cause it makes me feel better... But I would have really loved a yes you have this or a no you don't

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

Look into it, isn't this a phase 1 presentation of celiac with lymphocytes and inflammation being present?  IT is my thought that you caught it early before the damage to the villi is major, or they may just have took the biopsy's from a healthier place.  I still am trying to think of the name of the scale that phase 1 refers to.  Aside from looking it up yourself using a pathology report you can seek a second opinion about it.

 

Marsh Scale.  Sorry, I am suffering from too much sedatives in my colonoscopy the other day.  They had to use extra!

 

Best wishes for healing.

 

Dee

nvsmom Community Regular
nvsmom
Posted

It's possible that you have non-celiac gluten sensitivity (NCGS).  Some doctors think the AGA tests can be positive for those with AGA some of the time, although not as much as with celiac disease.  Those with NCGS will not have major villious atrophy but may show some changes (although I think it sounds like early celiac disease).  Only half of those with NCGS will have the DQ2 and DQ8 genes unlike the 97+% frequency in those with celiac disease. NCGS is about 6 times more common than celiac disease .

 

Unfortunately the only way to diagnose it is with a positive response to the gluten-free diet.  If all of your testing options are exhausted, you might as well start the diet. Keep a food and symptom journal and discus it with you doctor, and he may diagnose you with NCGS.

 

And son't let anyone tell you that NCGS is a lesser disease than celiac disease.  Almost all of the symptoms are the same, and I've talked with many with NCGS who have had more extreme reactions to gluten, but they are less likely to develop other autoimmune diseases, and don't get the dh rash or intestinal damage.  They can both be nasty diseases.  :(

 

Best of luck to you in whatever you decide to do.

spirit22 Newbie
spirit22
Posted

SPinch03 ~

 

I am on the journey with you.

 

Had an endo with a colonoscopy on May 8th. All biopsies were "normal" and my doc took quite a few & then requested they be "sliced".

 

Took the transglutaminase blood tests previously to having the endo (while still eating gluten). IGA was elevated, IGG was in normal range. 

 

Asked for genetic marker tests to be done. Both my gastro & primary docs balked but ordered them up for me anyway. After 4 weeks, I'm still waiting for my results to be read. They have arrived at both docs' offices but my primary doesn't know how to read them, so is not willing to show me the results. She's waiting on my gastro's interpretation but he's been on vacation for the past week. My primary only works three days a week, so between the two of them I've gotten no answers to anything! It's very frustrating!  

 

In the meantime, I've been eating gluten-free since my colonoscopy prep May 7th and am feeling so much better! Like you, SPinch03, I too would like to have some kind of diagnosis from all of these tests! Chances may be that I am NCGS but I'd still like to rule out celiac, if at all possible. If I have the gene marker(s), I want my family to know so they can be tested. That's part of the reason I am trying so hard to get a definitive answer.

 

Unfortunately, I'm not feeling very confident in my two docs right now and am thinking of taking my test results to a doc who deals with celiac more often. I live in a small area, so we don't have the specialists that the larger areas do. Can anyone here recommend a knowledgeable celiac doc in CA? I live along the Central Coast & can travel in either direction. Thanks!

 

Good luck, Spinch03. Update when you can.

CajunChic Explorer
CajunChic
Posted

Can anyone here recommend a knowledgeable celiac doc in CA? I live along the Central Coast & can travel in either direction. .

You'd probably get more help if you start a new thread in the doctors section. Good luck to you!
IrishHeart Veteran
IrishHeart
Posted

Having the gene for celiac does not diagnose it anyway.

 

A negative biopsy and a negative blood test are far more telling. 

 

 

Up to one third of the U.S. population 
has the genes for celiac disease, but it 
is thought that only 1-4% of them will 
actually develop the disease at some point 
in their lifetimes. This means that people 
with DQ2 or DQ8 can develop celiac 
disease, but the vast majority of them 
aren’t destined to develop it. 
 
Open Original Shared Link
spirit22 Newbie
spirit22
Posted

You'd probably get more help if you start a new thread in the doctors section. Good luck to you!

Thanks for the suggestion, I will head over there.

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

Celiac.com Sponsor (A8-M):


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 Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @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...
    2. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    3. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,098
    • 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):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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/
    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.