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

Celiac Genetic Test Results

Emmy208
 Share

Recommended Posts

Emmy208 Apprentice
Emmy208
Posted

Hi there, I’ve posted once before on this forum. I’ve done some blood tests (ttg-IgA, DGP-IgA/IgG, EMA IgA) for celiac and they were all negative, but after the blood tests I went gluten free and felt much better. For those who don’t know, I’ve had severe chronic fatigue, bloating, mainly constipation but also sometimes diarrhea, chronic nausea, muscle pain, migraines, unexplained vitamin deficiencies (D, zinc, iron), high inflammation markers (CRP, C4a, ESR), an itchy blistering rash that is symmetrical, yellow stool (gross ik sry), and white spots all over my nails. Since going off of gluten, the fatigue, GI issues, rash, migraines have improved significantly. I decided to get a genetic test to rule out celiac and I only had half DQ2, so I assumed I didn’t have to worry about having celiac bc it didn’t seem very likely. However, I went and saw a doctor a few days ago who told me that she thinks it’s still possible I have celiac. Apparently she’s seen something like this happen before. I am so confused honestly at this point. Is she right that I might still have celiac? What do you guys think?

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Yes, I agree with your doctor.  Some HLA DQ alleles are potent enough they can cause Celiac just by themselves.  

Have you had the itchy rash biopsied?  Dermatitis Herpetiformis is the itchy rash that some Celiac people get.  Having DH is a diagnosis of CeD, too. 

Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals while you are healing.  

Hope this helps.

Emmy208 Apprentice
Emmy208
Posted
  • Author
14 hours ago, knitty kitty said:

Yes, I agree with your doctor.  Some HLA DQ alleles are potent enough they can cause Celiac just by themselves.  

Have you had the itchy rash biopsied?  Dermatitis Herpetiformis is the itchy rash that some Celiac people get.  Having DH is a diagnosis of CeD, too. 

Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals while you are healing.  

Hope this helps.

Thank you, yes this helps a lot! 
I agree, I don’t think I am going to completely rule out celiac yet. I haven’t gotten a DH biopsy because I’m currently at school and there is no dermatologist knowledgeable of DH near me. Plus my mother thinks I’m kind of crazy for believing I might still have celiac which is also a problem. Bc of that I don’t know if I’ll seek an official diagnosis. Even if I did have celiac, though, I don’t think anything about my eating habits would change. I already avoid gluten cross contamination like the plague since it makes me so sick. I’m at least going to get a SIBO test though and treat that since I know a lot of people have both CeD and SIBO. I’ll def keep supplementing in the meantime. Lol maybe someday possibly over the summer I’ll do a test and see if the malabsorption symptoms return after having a few slices of bread but idk if it’s worth it. I may just not get a diagnosis and know I probably have it since my symptoms are pretty similar. 

  • 2 weeks later...
Scott Adams Grand Master
Scott Adams
Posted

I think you're misinterpreting genetic results here: " I only had half DQ2, so I assumed I didn’t have to worry about having celiac bc it didn’t seem very likely." 

The fact that you have a marker includes you into a larger group of people that may develop celiac disease, even if that risk is small, you are still in that pool. If you then have celiac disease symptoms like "severe chronic fatigue, bloating, mainly constipation but also sometimes diarrhea, chronic nausea, muscle pain, migraines, unexplained vitamin deficiencies (D, zinc, iron), high inflammation markers (CRP, C4a, ESR), an itchy blistering rash that is symmetrical, yellow stool (gross ik sry), and white spots all over my nails," then you definitely could have celiac disease. 

By going gluten-free and finding relief of many of your symptoms, it is further confirmation that you could have it, or at the very least, do have non-celiac gluten sensitivity. There is no test for NCGS. Celiac disease must first be ruled out, but the two share many of the same symptoms and NCGS is 10x more common than celiac disease.

If you'd like to share the details of your blood test results, feel free to do so, as they may shed more light on your situation. Did they do a total IGA test? 

 
Emmy208 Apprentice
Emmy208
Posted
  • Author
20 hours ago, Scott Adams said:

I think you're misinterpreting genetic results here: " I only had half DQ2, so I assumed I didn’t have to worry about having celiac bc it didn’t seem very likely." 

The fact that you have a marker includes you into a larger group of people that may develop celiac disease, even if that risk is small, you are still in that pool. If you then have celiac disease symptoms like "severe chronic fatigue, bloating, mainly constipation but also sometimes diarrhea, chronic nausea, muscle pain, migraines, unexplained vitamin deficiencies (D, zinc, iron), high inflammation markers (CRP, C4a, ESR), an itchy blistering rash that is symmetrical, yellow stool (gross ik sry), and white spots all over my nails," then you definitely could have celiac disease. 

By going gluten-free and finding relief of many of your symptoms, it is further confirmation that you could have it, or at the very least, do have non-celiac gluten sensitivity. There is no test for NCGS. Celiac disease must first be ruled out, but the two share many of the same symptoms and NCGS is 10x more common than celiac disease.

If you'd like to share the details of your blood test results, feel free to do so, as they may shed more light on your situation. Did they do a total IGA test? 

 

Thank you, yeah you are right. After I got my gene test, my mom didn’t think it was possible I had celiac and tried to talk me out of thinking I had it. It definitely also threw me off because quest told me I was entirely negative for celiac genes but then did provide a list of the HLA alleles detected, one of which was one of the DQ2 alleles (but for a while I had no idea that meant I was at risk). Later, I did more research and found out that it could still cause celiac. Since I was accidentally exposed to gluten last week (someone cross contaminated the dairy free butter in the gluten-free fridge), I’ve been starting to think I definitely could still have celiac since my stool went back to yellow after the glutening and I don’t think non-celiac gluten sensitivity causes yellow stool (but I could be wrong about that). As I mentioned in another post, I did not have a total serum IgA test done so I am going to ask my doctor about a test for it. 

Thank you again for your help! 

Scott Adams Grand Master
Scott Adams
Posted

Let us know how it turns out.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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 xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    2. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    3. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    4. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
    5. sha1091a
      - sha1091a posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia. going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 9...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748
    EndlessSummer
    Newest Member
    EndlessSummer
    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
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.