Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Throughly Confused Now


fedora

Recommended Posts

fedora Enthusiast

My DD's test results just came back from enterolab.

Fecal Antigliadin IgA 9 (Normal Range <10 Units)

Her tTg, casein and malabsorption were all fine.

So she has the highest number posible for normal. Their response was that she could eat gluten and retest later, go off gluten for prevention, or go off gluten if she has symptoms.

Her symptoms are mouth sores, delayed growth this year, and horrible mood swings at time.

Her genes are:Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

I am thrilled she tested normal on so much.

We discussed the results. She seems okay with doing a 100% gluten free trial for awhile and then challenge it to be sure. She has been mainly gluten free.

Has anyone else had this? What was the final outcome for you or your family symptom wise and diet?

Thanks


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

The person behind this page has a DQ1 kid, I forgot if she is DQ1 too. There are several others who are DQ1 and very gluten sensitive.

Open Original Shared Link

Some have a celiac diagnosis, and some not, even though they are very symptomatic from gluten.

I might be DQ1.

nora-n Rookie

I was thinking about another problem: Enterolab is not testing the alpha chains, just the beta chains, and thus they may miss the half DQ2 gene that is 0501 in the alpha chain (DQA1 0501) check out thefooddoc's blog where he srites about it in selverl entries.

I am wondering wether the other labs can tell yhou, and I think they report half a DQ2 gene because they test DQA1.

Interestingly, the Wiki article is continually growing I think. Previously they did not ginto such detail with the alpha and beta chains and that serotying is not accurate, only SSP-PCR is almost perfectly accurate.

Open Original Shared Link

Open Original Shared Link

And here Open Original Shared Link they found three plus 20 DQA1 *01 DQB1 *05 which is DQ5 like your daughter is.

And, Dr. Hadjivassiliou found that 20 % of his gluten ataxia patients are DQ1 like your DD.

I hope this can persuade her that her results do not rule out celiac per se, and certainly not gluten sensitivity or neurological symptoms from gluten.

nora

fedora Enthusiast

Hey Nora,

Thanks for your input.

About the alpha part of the genes(DQA1)...the DQ7 genes are where the alpha half of the half celiac gene is located. But only some of the DQ 7 genes has the corresponding alpha celiac gene. With the enterolab tests you only get the beta part not the alpha part. With the DQ7 genes with the celiac alpha part it is A1 0505. The ones that are not celiac alpha DQ7 genes have different alpha numbers.

Hope that is not confusing. So only people with DQ7 could potentially have the celiac alpha part.

I have DQ2.2 so I have the celiac beta part but not the alpha part since I am not DQ2.5

nora-n Rookie

You have DQ2,2 which is DQA1 0201 DQB1 0202 according to wikipedia, It is DQ2 but not so susceptible to celiac because they do not sit on the same allele or gene, I do not remember which. If they are on the same gene the risk is high.

"Genetic Typing. With the exception of DQ2 (*0201) which has a 98% detection capability, serotyping has drawbacks in relative accuracy. In addition, for many HLA studies genetic typing does not offer that much greater advantage over serotyping, but in the case of DQ there is a need for precise identification of HLA-DQB1 and HLA-DQA1 which cannot be provided by serotyping.

Isoform functionality is dependent on αβ composition. Most studies indicate a chromosomal linkage between disease causing DQA1 and DQB1 genes. Therefore the DQA1, α, component is as important as DQB1. An example of this is DQ2, DQ2 mediates Coeliac disease and Type 1 diabetes but only if the α5 subunit is present. This subunit can be encoded by either DQA1*0501 or DQA1*0505. When the DQ2 encoding β-chain gene is on the same chromosome as the α5 subunit isoform, then individuals who have this chromosome have a much higher risk of these two disease. When DQA1 and DQB1 alleles are linked in this way they form a haplotype. The DQA1*0501-DQB1*0201 haplotype is called the DQ2.5 haplotype, and the DQ that results α5β

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,342
    • Most Online (within 30 mins)
      7,748

    Setb1210
    Newest Member
    Setb1210
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...