Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea...
    2. Maura Gissen
      - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related. I do check all of my food products and supplements and I am very careful about them being gluten free...
    3. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did...
    4. Maura Gissen
      - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again?
    5. trents
      - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's. Have you had your celiac antibody levels checked recently?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,974
    • Most Online (within 30 mins)
      7,748
    Maura Gissen
    Newest Member
    Maura Gissen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
×
×
  • Create New...