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

Got My Results Back!

Nancym

Recommended Posts

Nancym Enthusiast
Nancym
Posted

I got the testing done with enterolab.com. I had been gluten free for nearly 3 months. All my cramping and weird diarrhea went away my second day gluten free. That kind of confirmed my suspicion but I figured I'd get the testing done to see for sure. I have the antigens and a small bit of antigens to casein too. :\

But I can't quite figure out what the DNA testing is telling me other than, "Yup, I have the gene(s?)".

Is this one gene or two? Is it possible to tell if I have one copy or two of the bad boys?

HLA-DQ Gene Molecular analysis: HLA-DQB1*0302, 0501

I'm feeling a bit of relief and a bit of angst right now. Relief because my family thought I was being weird. Angst because I hope I'm not too late in getting this diagnosed. I've had some weird symptoms in the abdominal area and I'm hoping I don't have cancer or something awful.

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted
I got the testing done with enterolab.com. I had been gluten free for nearly 3 months. All my cramping and weird diarrhea went away my second day gluten free. That kind of confirmed my suspicion but I figured I'd get the testing done to see for sure. I have the antigens and a small bit of antigens to casein too. :\

But I can't quite figure out what the DNA testing is telling me other than, "Yup, I have the gene(s?)".

Is this one gene or two? Is it possible to tell if I have one copy or two of the bad boys?

HLA-DQ Gene Molecular analysis: HLA-DQB1*0302, 0501

I'm feeling a bit of relief and a bit of angst right now. Relief because my family thought I was being weird. Angst because I hope I'm not too late in getting this diagnosed. I've had some weird symptoms in the abdominal area and I'm hoping I don't have cancer or something awful.

Don't worry about the weird feelings. It takes quite awhile for all of the damage to be healed. Have you laid off of the dairy? If not, you might try that for awhile. YOu didn't state how long you had been sick before going gluten-free. The chances of cancer or other awful things rises the longer your body is reacting to gluten, and it takes a long time of accumulated damage before something bad cand take hold. As soon as you go gluten-free, the body starts healing itself, as you no doubt learned since the D stopped. Just keep on going gluten-free and regaining your health!

jenvan Collaborator
jenvan
Posted

Nancym--

Weird abdominal issues are the name of the game for Celiacs...but you can keep up with a GI doc and they can rule cancer etc out if you are really concerned about it. And if symptoms persist without improvement I would go to a doctor to be on the safe side. What are your symptoms exactly? Some of mine changed initally after going gluten-free before they improved.

Nancym Enthusiast
Nancym
Posted
  • Author
Nancym--

Weird abdominal issues are the name of the game for Celiacs...but you can keep up with a GI doc and they can rule cancer etc out if you are really concerned about it. And if symptoms persist without improvement I would go to a doctor to be on the safe side. What are your symptoms exactly? Some of mine changed initally after going gluten-free before they improved.

Well, I had a feeling like I had to go potty even though I didn't. Felt like a kind of pressure in my lower abdomen, someone poking my intestines. Then I got this horrible pain in whatever muscle it is that you use to urinate or defecate. It hurt like hell to sit on the toilet, it even hurt into my back. And finally I started getting bad menstrual cramps right in the middle of my cycle. This all kind of came on at once so it was hard to tell where one pain ended and the other one started!

I'm definitely going to see the doctor and try to get checked out for Ovarian issues and colon ones too. I have to decide if I want to tell my doctor about the Enterolab testing or not. I suppose I will.

But I've had some really weird muscle pains, I'm hoping they'll go away eventually with the gluten free diet. Once it was actually hurting to breathe, right in the center of my chest!

Anyone know about the DNA test? I'm curious, is that one gene and one copy of it has the Celiac markers and the other copy of it has the Gluten Intolerance markers? Or is that two different genes? I was curious whether or not this shows that I was handed down something from each parent.

Oh yes, I'm rather sad about having to give up the casein too! That made up a huge part of my diet. *sigh*

DonnaD Apprentice
DonnaD
Posted

Hi Nancy

In our family we have C rather than D but we all have lower right sided dull stitch like pain when not wheat/gluten free and terrible pain, like labour pains when going to the loo. Sometimes I used to think I would pass out. I put linseeds in my muslie now and don't have a problem gluten-free.

I did tell my new doctor about Enterolab she was quite supportive, I took with me articles regarding my particular gene type although I think the fact that my Daughter is biopsy confirmed made a difference.

I was also a bit unsure about the gene thing, I have HLA-DQB1*0501, 501 so I e-mailed Phyllis at Entrolab, this was her reply:

Dear Donna,

I'm sure you have already read the other email I sent clarifying that you did, in fact, receive one 0501 gene from each of your parents. This means you are DQ1 subtype 5 for both genes.

Your daughter with celiac disease will definitely have received an 0501 gene from you.

If she has one of the main Celiac genes, she will have inherited it from her father.

I hope this helps, and I pray that a gluten-free/casein-free diet will have you feeling better very soon.

Most sincerely,

Phyllis Zermeno, RN, BSN

Clinical Manager, EnteroLab

I have researched HLA-DQB1*0501 and although it is not one of the 2 main genes it seems to be linked to neurological problems, brain fog, fibro etc not so much the'classic' coeliac problems.

I hope this is of some help, I am actually enjoying my research into this, I have been feeling a bit 'brain dead' as I am no longer able to work.

Nancym Enthusiast
Nancym
Posted
  • Author

I'm glad you found info on 0501! That is one of my gene copies. I definitely think it was active in me. I had the brain fog thing going on too. I thought it was due to my thyroid medication not working well, but now I'm thinking it is otherwise! I'm cutting back on my T3 thyroid meds and not feeling that brain fog. I think I might be able to stop taking it altogether eventually.

It has been really interesting looking for information on my two gene copies, I got 0302 as well as 0501. I found the following things out:

0302 predisposes one towards Type 1 diabetes and Celiac disease, but it protects you against severe malaria. It also makes you more suseptible to a form of cervical cancer. (Bummer that).

I think I found that 0501 protects you from narcolepsy. So there we have something going for us!

Well today is the first day of giving up milk products as I'm also Casein intolerant. Boy, what a double whammy!

But I also do have some weight to lose and I have decided I want to change my eating habits so I eat more for survival rather than entertainment. I tend to eat too much when I'm entertaining my tastebuds. So perhaps all this is really a blessing in disguise.

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. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    2. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    3. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    4. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
    5. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,140
    • Most Online (within 30 mins)
      7,748
    Staticgypsy
    Newest Member
    Staticgypsy
    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

    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      Airborne Gluten?

      By Jmartes71 · Posted

      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.