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Let's Post Our Celiac Genes - Everyone Join Plz !
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I have seen this on other gluten free forums and thought it would be interesting and resourceful to do it here. If you've had a genetic test for celiac post your result and celiac diagnosis or symptoms. I'll start first:

Mom - DQ2.5/DQ2.2 - 48 years old female - positive blood work marsh 3B at biopsy

Myself- DQ2.2/DQ2.2 - 24 years old female - bloating and diarrhea

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DQ1/DQ1 (subtypes 5,6)

Negative blood

No intestional biopsy

Rash biopsy DH or Lichen Planus (they aren't sure which but both autoimmune gluten reactions)

Too many symptoms to list but most severe being Osteomalacia. I have Iron defcient anemia, and critically low vitamin D, elevated Liver Enzymes etc....

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Dd is DQ2.5 and DQ8. Husband has the same but it turned out type 1 diabetic in him Dd has hashis and celiac and eosinophilic esophagus. She has no GI symptoms at all. It's all internal. Jury is still out on type 1. I am praying going gluten free will stop that.

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ME: Diagnosed by biopsy 2/12/07 Marsh I. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Symptoms: gas, intestinal pain, bloating, big D, mouth/canker sores, anxiety, joint and spinal pain, vitamin/mineral malabsorption causing low Vit D, low Vit B and ostopenia and general poor health and early menopause. All the above symptoms gone/relieved. T-scores for osteopenia are improved in five years.

Son, age 19: Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5)

Symptoms: Previously delayed growth. 75th percentile height and 75th percentile weight at age 4. 3rd percentile weight, 25th percentile height (5'3") at age 15. Significantly delayed puberty (past age 15). Bone age 12.1 at age 15. Stomach aches, intestinal upsets and general poor health. Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Went gluten-free, casein-free 3/15/08. Now 6'3" (Over six feet!) and doing great.

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Thanks for those who replied.

More than a 100 views and 3 replies ! Lol so co-operative ! I'm not asking you for your credit card number just to clarify :P lol

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"views" ...means the number of people who read this post and this site(while surfing the internet)...not necessarily members who are "ignoring you and not responding", okay?

Those "numbers of views" mean nothing --in terms of people "unwilling to respond"... so, don't take it personally. :)

I have Double HLA- DQ2 (I am a 2.2, according to my genetic tests--which is a "rare" combo for celiac--about 1%)

I am a diagnosed celiac and I had dozens of symptoms (my story is well told on here, so I won't bore everyone again) and I was left UnDXed for over 35 years.

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I've read your post, am diagnosed by positive celiac blood panel and positive biopsies but I don't have a freakin' clue what my genes are. I suspect there are others in the same position who've read your post.

Likewise my adult daughter is also celiac and obviously got at least one of my genes but she has no clue what they are either.

Nonetheless, your question is an interesting one for those who know what genes they have.

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I've never been tested, and don't see the need for it.

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"views" ...means the number of people who read this post and this site(while surfing the internet)...not necessarily members who are "ignoring you and not responding", okay?

Those "numbers of views" mean nothing --in terms of people "unwilling to respond"... so, don't take it personally. :)

I have Double HLA- DQ2 (I am a 2.2, according to my genetic tests--which is a "rare" combo for celiac--about 1%)

I am a diagnosed celiac and I had dozens of symptoms (my story is well told on here, so I won't bore everyone again) and I was left UnDXed for over 35 years.

IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.

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IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.

Cyberprof, are you homozygous (two copies of DQ2.5) or heterozygous (one copy of DQ2.5) ?

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IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.

I really never discussed it much with him after we saw the test results.

To be honest, his first priority was to get me straightened out. I had many deficiencies and he only ordered the genetic tests as part of the full follow up diagnostic package on me.

I requested them because my Dad had suffered some strange & horrible gastro symptoms and had pernicious anemia and dumped hematocrits which required blood transfusions for 8 years. We know now that he certainly was a celiac, but it's too late for him. My Mom also suffered many symptoms and once she saw how this thing tried to kill me, and then looked at the gene test results, taking into account her own health history, she went gluten-free (Her doctor thought she was very wise to do it and her many symptoms have resolved and she is the most amazingly healthy 85-year- old there is. :) ) I had also hoped it would encourage my siblings to be tested (as they have many AI diseases) but to no avail.

When I see him for my checkup in October, I'll ask him his thoughts.

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Just adding to what others said...don't stress about the number of views vs. the number of replies, I think there are a lot of folks who just can't get the gene tests!

I am a DQ 2.2.

Lowest risk category but positive blood test. Vague non-classic symptoms...along with Hashimoto's disease.

A proud member of the "1% of the 1%" I guess.

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I'm a double DQ9. You can see by my sig how much fun that was prediagnosis.

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I just got genetic testing done a few days ago. Here are my results (been trying to figure out what they mean but it's so complicated):

DQA1 Genotype:

0505 (HLA-DQ2)

DQB1 Genotype:

0301 (HLA-DQ3)

0202 (HLA-DQ2)

Brief summary of my symptoms: I have many chronic fatigue symptoms, sleep apnea, mental fog, mild digestion problems, and am possibly hypothyroid (most of my immediate family members are hypothyroid).

Btw, I don't know if I'm gluten sensitive or not yet. I'm new to the gluten-free diet but haven't really noticed any improvement so far. I did have some kind of stool test done for celiac disease several years ago but it came back negative.

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    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)
       
    • Excellent point, GFinDC!!! I just assumed that Steph had the endoscopy and not just the antibodies tests.    
    • She (your PCP)  can order a celiac blood panel.  It might not be a complete panel, but it's a start.  Any medical doctor can order one.  A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder)  or colonoscopy (IBS).   Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel.  You could go to the lab before or after work.  Pretty easy!  
    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
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