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

Is Positive Genetic Test Enough For Some Of You To Go Gluten Free?


Newbyliz

Recommended Posts

Newbyliz Rookie

I just had my second endoscopy yesterday, Tues. Dec. 1st. The doctor said everything looked okay but that I could certainly try a gluten free diet to see if that helps since all of my testing is over. Part of me wonders if I should wait to see what the biopsies say but the other part of me is really ready to give the gluten free diet a whirl. My genetic testing stated I was positive for HLA-DQ2 and a subset of that gene(sorry I don't have the exact wording of the results-this was given to me by my gastro's nurse) which is the only evidence so far that celiac may be playing a part in how I feel. I have tried just about everything else and really am ready to feel better. Has anyone felt that having the genes alone is enough to make them want to at least try a gluten free lifestyle? I have a follow-up with my gastro in 8 weeks which I feel is a good amount of time to give this diet a try. It is sort of strange to know that I posses 2 copies of the HLA-DQ2 gene and that it is lurking in the background. I have to find some peace that even if the biopsies come back normal it may be the best thing for my body to elimate gluten. Any feedback would be greatly appreciated.


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



Celiac.com Sponsor (A8-M):



Swimmr Contributor
I just had my second endoscopy yesterday, Tues. Dec. 1st. The doctor said everything looked okay but that I could certainly try a gluten free diet to see if that helps since all of my testing is over. Part of me wonders if I should wait to see what the biopsies say but the other part of me is really ready to give the gluten free diet a whirl. My genetic testing stated I was positive for HLA-DQ2 and a subset of that gene(sorry I don't have the exact wording of the results-this was given to me by my gastro's nurse) which is the only evidence so far that celiac may be playing a part in how I feel. I have tried just about everything else and really am ready to feel better. Has anyone felt that having the genes alone is enough to make them want to at least try a gluten free lifestyle? I have a follow-up with my gastro in 8 weeks which I feel is a good amount of time to give this diet a try. It is sort of strange to know that I posses 2 copies of the HLA-DQ2 gene and that it is lurking in the background. I have to find some peace that even if the biopsies come back normal it may be the best thing for my body to elimate gluten. Any feedback would be greatly appreciated.

If you carry the gene, I've read, heard and been told that there is more than a good chance you have it.

I would do the gluten free diet anyways...what do you have to lose? Well, gluten, but that is a good thing anyways because you'll probably feel better even after just a couple weeks. Some people say they feel better within days.

Good luck :)

Nancym Enthusiast

For me the decision was pretty simple. Make a temporary change in my diet to see if long standing issues went away or continue to suffer and put myself at the mercy of current medical practices constantly which weren't doing me a bit of good, and were quite possibly making things worse.

I had my answer very quickly after going gluten free.

Newbyliz Rookie
For me the decision was pretty simple. Make a temporary change in my diet to see if long standing issues went away or continue to suffer and put myself at the mercy of current medical practices constantly which weren't doing me a bit of good, and were quite possibly making things worse.

I had my answer very quickly after going gluten free.

Thank you for your replies. You're right the diet change is relatively easy as long as you are committed to it and if it helps it will be wonderful. I have to let go of that feeling that I have to have more than just a positive gene test to be validated. I have stocked my pantry with things so that baking this season won't be hard and am really hoping and PRAYING that this helps me regardless of the results I get from the biopsies. I am so glad this site is here for all the support you get.

ravenwoodglass Mentor
Thank you for your replies. You're right the diet change is relatively easy as long as you are committed to it and if it helps it will be wonderful. I have to let go of that feeling that I have to have more than just a positive gene test to be validated. I have stocked my pantry with things so that baking this season won't be hard and am really hoping and PRAYING that this helps me regardless of the results I get from the biopsies. I am so glad this site is here for all the support you get.

Start the diet now. You are done with the celiac testing and your body may give you the answer before you even go back for the results. You have nothing to lose.

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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,862
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.