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

Skylark! Pretty Please

beebs

Recommended Posts

beebs Enthusiast
beebs
Posted

I know that DQ8 is in there - was just wondering what the others mean - if anything?? Sorry for being a pain!!

HLA -DR 4, 15

DRB1 04, 15

HLA-DQ 6, 8

HLA-DQA1 01, 03

HLA-DQB1 0302/7/8/11, 06

I will NEVER understand this stuff :lol:

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

I'm not the only person here who can read a gene test. :lol:

They tested your HLA-DR genes as well as HLA-DQ. You have two commonly linked pairs, DR4-DQ8 and DR15-DQ6. The DR4-DQ8 pair is associated with celiac, rheumatoid arthritis, and juvenile diabetes. (The DR4 gene is common and not everyone with the gene gets rheumatoid arthritis, so don't worry.)

It looks like they tested your DQA chain but not in great detail. They just verified that you do not have DQA*0505 or DQA*0501 which are the ones thought to confer risk for celiac. The "0302/7/8/11" also means they only tested to see that you have DQ8; they didn't go into great detail to figure out exactly which variant.

In "board speak" you are DQ6, DQ8. :)

beebs Enthusiast
beebs
Posted
  • Author

Hmm- I have some type of autoimmune arthritis that isn't showing up on bloods - so that is interesting..

thanks for that !!

Skylark Collaborator
Skylark
Posted

Wow, that is interesting. Sorry to hear it though. :( Arthritis is no fun.

beebs Enthusiast
beebs
Posted
  • Author

I'll say - I was diagnosed at 28! I am now 34 and its spreading and getting worse and worse, it goes into complete remission when I am pregnant - so its totally autoimmune in nature...arrgh. I have other things as well but not enough for a diagnosis of anything firm, so I have some sjogren's symptoms, some lupus symtpoms, psoriatic arthritis is a possibility but totally negative bloods - just like the celiac bloods....aiiee!

mushroom Proficient
mushroom
Posted

I'll say - I was diagnosed at 28! I am now 34 and its spreading and getting worse and worse, it goes into complete remission when I am pregnant - so its totally autoimmune in nature...arrgh. I have other things as well but not enough for a diagnosis of anything firm, so I have some sjogren's symptoms, some lupus symtpoms, psoriatic arthritis is a possibility but totally negative bloods - just like the celiac bloods....aiiee!

Beebs, I have psoriatic arthritis with negative RF - most of us do not test positive on RF in fact - it is one of the peculiarities of the disease. My condition flares and goes into remission periods for a while - I am afraid it is not particularly responsibe to diet. Have you had your sed rate and CRP checked?

beebs Enthusiast
beebs
Posted
  • Author

Yep - they are always elevated - no by much alot of the time though. I have psoriatic nails as well - which means I have a 30% chance of psoriatic arthritis, think I just have so many different things going on they want to get the diag right? I've been seeing the rheumy for 6 years now and still no official diag....which is a good thing - except when they want me to take those awful medications and I don't want to because I'm not even diagnosed!!!

My immune system is also totally shot, I have developed an infection after every birth of my kids and the last one took 21 courses of anitbiotics to get on top of. Is that what happens to you too, shroomy?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Yep - they are always elevated - no by much alot of the time though. I have psoriatic nails as well - which means I have a 30% chance of psoriatic arthritis, think I just have so many different things going on they want to get the diag right? I've been seeing the rheumy for 6 years now and still no official diag....which is a good thing - except when they want me to take those awful medications and I don't want to because I'm not even diagnosed!!!

My immune system is also totally shot, I have developed an infection after every birth of my kids and the last one took 21 courses of anitbiotics to get on top of. Is that what happens to you too, shroomy?

Yes, my immune system is in the toilet - literally as well as figuratively :lol: Well, it is a lot better now :D except when I suppress it.

I have had a CRP of over 100 for a couple of years in the past; it did not go down until I started taking Humira shots. I was first diagnosed with polymyalgia rheumatica because that's what my dad was (falsely, I believe) dianosed with, then with RF-negative rheumatoid arthritis, and finally psoriatic arthritis when the psoriasis showed up. All the toenails on my left foot are infected with psoriasis (I keep hoping they are growing out) plus I have had it on my limbs, knees, elbows, palms, soles of my feet, and places I can't even mention :o. Ever since I was a child I have had every infection in the book, from mumps and measles to continual colds all leading to secondary chest infections to a mycoplasma infection where I thought I was going to die. UTI's (runs in the family - ha!) staph infections, and now, cellulitis at the drop of a hat. Not fun. You and I must be the antibiotic queens of Down Under. No wonder our guts rebelled.

I agree about those awful DMARDS!! :ph34r: Was already intolerant of prednisone, Methotrexate was a killer, diclofenac did in my kidneys, sulfsalazine worked on the arthritis but flared my psoriasis, and then stopped working, could not take leflunomide - have to go to the US to get my Humira because PHARMAC only covers it for people who are - like - dying!!! :unsure::( (I have insurance in the US that pays for it :D ) But my CRP is under 5 - hey! And my arthritic fingers and toes are still a bit pudgy but my joints are fine, which is great. I think it is important to stay on top of it before your joints start deteriorating. At one point I couldn't bring my index fingers and thumbs anywhere near each other but can make fists now, no problem.

I hope you keep plugging away with your attempts at diagnoses for what is going on with your family. Sometimes life gets really hard for a while. :( But then it gets better :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      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
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      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
      My only proof

      By Scott Adams · Posted

      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
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      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.
×
×
  • 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.