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

Does Neg Test, But Dq2 Gene Mean You Must Be Gf?


minivanmama0300

Recommended Posts

minivanmama0300 Newbie

I am so amazed! I received my dd's Enterolab results in the email just now. Here they are:

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 8 Units (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase

Fecal Antitissue Transglutaminase IgA 9 Units (Normal Range <10 Units)

Stool Test for Cow's Milk Protein Sensitivity

Fecal anti-casein IgA antibody 13 Units (Normal Range <10 Units)

Stool Test for Intestinal Fat Malabsorption

Microscopic Fecal Fat Score: 18 Units (Normal Range < 300 Units)

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0201, 0503

So I think that sounds pretty good, she is in the normal range for everything. The gene part confuses me. I know I have seen others explain the genes, Are these the celiac genes? Where do I go from here? Her symptoms are not near as bad lately, and she is under 2 years old. I wonder if the worst of her symptoms were due to some outside thing, like a virus. Anyway, If she has one of the genes, what do I do? Go gluten-free? Keep that in mind and watch her and look for an onset? Please advise!!!!

Jess


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



Celiac.com Sponsor (A8-M):



minivanmama0300 Newbie

PLEASE SOMEONE!!

My dd's tests from enterolab came back negative, but she does have the 201 and the 503 gene. The 201 as I understand is the main celiac gene? Correct me if I am wrong. What does this mean? Should she be gluten-free even if she is no longer having any symptoms or problems, and if she is negative everywhere else? What should we do next? She did have a dairy sensitivity which didn't surprise me. I am thinking of checking for other allergies when we have our next appointment.

Jess

lbsteenwyk Explorer

I am by no means an expert, but I would say that she does not need to be gluten free at this point. She has the gene, so she could develop celiac disease later in life. If you've had her on a gluten-free diet, I would put her back on gluten and see what happens.

MySuicidalTurtle Enthusiast

Go to your doctor with the results and talk about it. That is the best way to know what to do.

burdee Enthusiast

Hi Jess:

When you received the email with test results from Enterolab, how did Elab interpret those results? They usually print an interpretation and recommendations just below the test results. From the numbers you posted, your daughter's results for everything EXCEPT casein (the milk protein) intolerance. That's not an allergy. It means she produces antibodies to casein just as celiacs produce antibodies to gluten. So I suspect Elab recommended that she avoid all dairy, not just lactose (the milk sugar), but only you know the recommendations from their email. Did she have other symptoms which made you want to test for celiac disease? Or do you have celiac disease? Sorry, but I missed the history before you ordered Elab tests.

BURDEE

minivanmama0300 Newbie

Thats the problem. There was NO INTERPRETATION at all!!! Nothing! I emailed Enterolab and have had no response. The whole thing just pisses me off. There was a small section detailing how to read the results, but not an actual interpretaion like I have seen on others reports posted here.

Well, she was having really bad GI symptoms, and what I thought were food allergy symptoms several months ago and thru a food journal we narrowed it down to bread products. Maybe it is a wheat allergy. Maybe not. She is fine now, no symptoms at all to speak of. So who knows, I guess we will stick with a regular diet. I sure regret wasting that money on Enterolab, I don't really feel like I got any where with that.

gf4life Enthusiast

There should have been an interpretation of the results included in the e-mail. It most likely is an error at their end, and the e-mail was sent before the interpretation was made. Below the Molecular Analysis for the genes it should also have listed the Serologic Equivalent (ie: DQ2, DQ3, DQ8, etc.). I would keep e-mailing them about it until you get the right response. Or better yet, call them. Then they have to talk to you directly and you can explain how upsetting htis is to you and how important it is for you to have an accurate report of the testing. I mean you paid around $400, right! You should get the whole report! Keep at them, I know they are a good lab and are very busy, but don't let them drop the ball. Keep tossing it at them until they give you the whole report!

I know that the first part of the genes your daughter has (HLA-DQB1*0201) is the DQ2 gene. I'm not sure about the other one. It is not one of the gene codes I recognise. If she has symptoms that improve on the gluten-free diet, then you could prevent her from ever getting celiac disease by keeping her on it. But if she is not on a gluten-free diet and her health is fine, then you can keep her on gluten and just have her blood tested periodically (every few years) to screen for the antibodies. Certainly have her tested again promptly if she develops worse symptoms. It is your call and you should go with whatever you feel is best for your daughter and your family. Only you can decide what that is.

God bless,

Mariann


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

If that gene like Mariann said is a DQ2 gene.... that is one of the major celiac genes.

Archived

This topic is now archived and is closed to further replies.

  • 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. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.