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

Help With My Genetic Results Please


3groovygirls

Recommended Posts

3groovygirls Contributor

Hi everyone!

I got my results today. I was tested b/c my daugher has Celiac and I am very skinny and had a high amylase reading, but it appears i don't have Celiac BUT I do have the genes for it. I was wondering if you all could look over the test results and tell me what you think. What are the chances someone with my genes gets Celiac? It says I am 10X the risk and am high risk. In real life does that mean I might REALLY get it?

Here's my results from Promethius.

I have DQ2.5(HLA DQA*05:DQB1*0201)

It puts me in Category 4, DQ2 Heterogzygous relative risk HIGH.

But I'm fine now! So what triggers this. I don't want to get it....

my other results were normal;

deamin Gliad pep igg <0.4 (<4.9)

DEAMIN GLIAD PEP IGA 0.3 (<6.1)

TTA IGA 0.2 (<10.3)

ANIT ENDOMYSIAL IGA NEGATIVE

TOTAL IGA 90 (44-441)

so I think i didn't even come close to failing right? other than the genes? It's funny b/c I DO think I am a bit gluten sensitive. Since eating a lot of gluten-free products (but not all) I find i am sensitive to whole wheat stuff now.


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

yes, you have the most common gene for celiac.

What is the other gene, or do you have two of them? It would not really change things, though.

Do you think you have celiac without a positive blood test?

That is quite common, at least 20% of celiacs with total villous atrophy have negative blood tests.

Of course you not eating much gluten might just have obscured the picture.....for a gluten challenge the last recommendation I have seen is at least 0,5 grams gluten per kg weight per day for at least 6 weeks. That is a lot of bread.

domesticactivist Collaborator

Nora where did you get that formula for how much gluten to eat on the challenge? I looked and looked for a guideline like that! All I found were a few vague articles and so i settled on 20 grams a day for any adult.

domesticactivist Collaborator

This formula puts me at needing 28 grams a day. That really is a lot of gluten! I think some days I may have hit that but not most days. I held out for just under 2 months. Test results coming back next week.

Skylark Collaborator

In real life, it means you have at least 10% chance of getting celiac, possibly higher because your daughter has it and you are already noticing a reaction to gluten.

It's not clear what triggers celiac, though a lot of us have had a flu, food poisoning, pregnancy, car accident, or stress trigger the disease. Other people have it appear with no warning and no particular trigger. You can minimize the risk of getting celiac by limiting the amount of gluten you eat.

nora-n Rookie

About the 0,3 grams and 0,5 grams of gluten for a gluten challenge, maybe I have that on google bookmarks, maybe not, but a seach on pubmed would maybe give some results.

There also was an article on celaic.com on gluten challenge.

The problem is that often doctors say two slices of bread a day, which is way too little in adults. It is probably right for children.....

domesticactivist Collaborator

Yes, the article on celiac.com said "about 4 slices of bread a day" and put the average slice of bread at 4.8 grams of gluten. From my label reading, most slices of bread that I saw actually had less than 4.8 grams. I decided on how much to eat for my challenge based on rounding up to 5 grams and multiplying by 4, to be on the safe side.

I saw some references that said 3 months so I aimed for that. But I had to quit at 2 months. (Anyone who wants all the gory details of my gluten challenge can pm me, as I kept a log I am happy to share.)

These "by weight" amounts seem to make more sense than a blanket advisory, but I'd love to see the actual references. I haven't found anything that shows a study, for example, of amounts eaten on a gluten challenge vs test results.


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

let

Skylark Collaborator

Here are some challenge references I put in another thread, Nora. Maybe it will save you some time. :)

nora-n Rookie

I remember the abstracts that said anywhere from 6 weeks to several years, must find it.

You had one with five weeks here, that is the shortest time I have seen. (and that is children)

Blue-eyed bandit Apprentice

I read it only takes 1/8 a teaspoon daily of gluten to cause continual damage to the intestines. Why would you eat 4 slices of bread?!

kareng Grand Master

I read it only takes 1/8 a teaspoon daily of gluten to cause continual damage to the intestines. Why would you eat 4 slices of bread?!

If you want to have enough antibodies to show up on the blood test after being gluten free for years, you need more than an 1/8 of a teaspoon. these people are talking about people on gluten-free diets.

I don't want anyone to think that less than 1/8 tsp of wheat is OK, because it's not.

nora-n Rookie

when I did the maths, it was 6 slices a day to reach 0,3 grams of gluten per kg

The damage is often also proportional with the amount of gluten, and reverse proportional with time. Meaning it will take longer time before one gets a positive biopsy on smaller amounts of gluten.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.