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

Howdy From The Sea Of Cortez

JerryK

By JerryK
in Coping with Celiac Disease

Recommended Posts

JerryK Community Regular
JerryK
Posted

Yes it's true, I'm logging in from this cruise ship to see if my dna tests are back, and they are!

Looks like I'm NOT Celiac, but I do have two genes for Gluten Sensitivity. Not a huge surprise since a whole lot of people have them. Here's what Dr. Fine has to say. If any of you experts want to add anything to his analysis, please feel free. Meanwhile I'll go on avoiding the cake, thank you very much :blink: For not being a Celiac, gluten-free has surely cleared up my gastro symptoms, in fact, it feels like

I'm hardly going at all.......

Anyway, if anyone knows what the below really means....fill me in.

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Take Care, j

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

Celiac.com Sponsor (A8-M):


Judyin Philly Enthusiast
Judyin Philly
Posted

HI JERRY ON THE HIGH SEAS..

I GOT MINE TOO AND STILL LOOKING IT OVER WILL POST AFTER TALKING TO THE LAB TOMORROW BUT UNTIL THEN FOLKS HERE ARE HELPING ME DESIFER IT ALL

HAVE A GREAT TIME..HEAR THE gluten-free FOOD IS GREAT ON A SHIP.

JUDY

AndreaB Contributor
AndreaB
Posted

I don't have anything to add that you don't already know.

Maybe someday we'll know more about the gluten intolerant genes vs the known celiac genes.

Enjoy your cruise. :)

CMCM Rising Star
CMCM
Posted

Well, be glad you don't have the added worry of celiac, BUT...here's the key phrase in Dr. Fine's comment:

"Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe."

And here's another comment fromDr. Fine which you may not yet have seen:

Although the immune reaction to gluten, i.e., gluten sensitivity, is the cause of the villous atrophy of celiac sprue, having these antibodies in stool, or even malabsorption, does not necessarily mean you will have detectable villous atrophy in an intestinal biopsy. But why does it matter, since it is known that a person can have every last complication from gluten sensitivity and never have villous atrophy? In other words, one can have gluten sensitivity damaging the intestine on a sub-microscopic level destroying function, or damaging other organs/tissues without having celiac sprue. Thus, there is no reason to expose yourself to the risks, invasive nature, and expense of an intestinal biopsy. This idea is not new. Some have said this for years with respect to positive antiendomysial antibodies. Now we extend this ideology to our stool testing; if you have the immune reaction, and especially if you have detectable malabsorption, symptoms, and/or immune disease, what is there to wait for to go gluten-free? And if you have none of these consequences, why wait for them to appear? Be thankful you do not, and go gluten-free.

________

Yes it's true, I'm logging in from this cruise ship to see if my dna tests are back, and they are!

Looks like I'm NOT Celiac, but I do have two genes for Gluten Sensitivity. Not a huge surprise since a whole lot of people have them. Here's what Dr. Fine has to say. If any of you experts want to add anything to his analysis, please feel free. Meanwhile I'll go on avoiding the cake, thank you very much :blink: For not being a Celiac, gluten-free has surely cleared up my gastro symptoms, in fact, it feels like

I'm hardly going at all.......

Anyway, if anyone knows what the below really means....fill me in.

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Take Care, j

CarlaB Enthusiast
CarlaB
Posted

If we don't have celiac genes, we still have gluten sensitive genes because the ONLY gene combination that is NOT gluten sensitive is DQ4 found in Asians.

I am the same as you, though. I feel much better gluten-free. I tend to think most people would.

ArtGirl Enthusiast
ArtGirl
Posted

Like you, I have two gluten sensitivity genes. No celiac. I also showed no malabsorbtion issues. My conclusion was that I'm very fortunate indeed. Even though I have an autoimmune response to gluten, it must not be causing any villi atrophe (my own conclusion since untreated gluten intolerance for over 40 years has not resulted in detectible malabsorbtion). However, I still get sick when eating gluten. And, believe me, after having been symptom-free for a couple months now, I am not willing to go back to where I was before. No way! I like it like this :)

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. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in ...
    2. Scott Adams
      - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also ...
    3. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Healthy Gluten Free Foods low sugar that you found?

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those...
    4. Scott Adams
      - Scott Adams replied to lizzie42's topic in Traveling with Celiac Disease
      1

      Trip to Anaheim/Disney

      This article is a few of years old, but my still be helpful.
    5. trents
      - trents commented on Scott Adams's article in Winter 2026 Issue
      14

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      This is likely dependent on the sensitivity of the individual celiac.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,242
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Scott Adams · Posted

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      Low iron and vitamin d

      By Scott Adams · Posted

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. This article has more info:    
    • Scott Adams
      Healthy Gluten Free Foods low sugar that you found?

      By Scott Adams · Posted

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
    • Scott Adams
      Trip to Anaheim/Disney

      By Scott Adams · Posted

      This article is a few of years old, but my still be helpful.  
    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
×
×
  • 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.