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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • 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.