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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.