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

"officially" Diagnosed With Genetics


Kcat99

Recommended Posts

Kcat99 Newbie

Hi all, my first post. I've been gluten free since last Dec. Had labs a few weeks ago and the results are back.

Hope I get this all right...neg. for DQ2, positive for DQ8 (A1*03/B1*0302) Then I'm guessing my other DQ (two right?) is a DQ5 since I see A1*01 / B1*0502

History:

44F, Psoriasis since age 16, I have antibodies for Graves' at @ 100% activity 125%+ is diagnostic, the endo thinks I am going hypothyroid (I'm considered subclinical hypo - no TPO's), had 'the runs' for years - used to call pasta my 'diet food' for that reason - like I didn't have a clue!! Getting that 4 to 5+ times a week isn't normal - who knew?? Well, got an infection and huh, I'm diabetic also. I'm listed as T2 even without fitting that profile (medically or physically) but my brother does (it really wasn't in the family - and no known T1 either) but my GAD65's came back .2 and the rest of the antibodies came back neg. for T1 diabetes. Diagnosed officially with the diabetes last year (very mild, insulin sensitive...I know, odd but the endo said I must have been resistant at some point - I tend to agree with that). So after reading some research article I decided to try gluten free - maybe it would help my mild to moderate Psoriasis. Well..within 3 days I saw a difference. And it's still clearing slowly. At first it was quick.

My antibodies came out neg. >3 for both IgA and IgG but I had been gluten free 15 weeks by then + I really wasn't eating much gluten to begin with because of the diabetes. I did also take one of those over the counter tests from Canada - but there again it was 5 weeks into the gluten free and it was neg. also (so I don't know how much stock to put there)

Endo is considering me a Celiac based upon my genetics and how much improvement I've seen since going gluten free (namely the psoriasis greatly improving)

So... I state "officially" since I will never be OFFICIALLY diagnosed. It's not an option to go back on gluten. Also I noticed my LDL lowered from 121 to 89 on the gluten free diet and it's not because I wasn't eating processed foods. Is that typical? Common?

Also I can't find anything about the DQ5. Figure it's pretty unknown / neutral?

I know the DQ8 is highly linked to T1 but it looks like if I didn't have the autoimmune attack as a child I won't / shouldn't have it. But if I was both DQ2 and DQ8 then ya, it's really up there as LADA or late onset T1. But for a female...only DQ8 is not common for Celiacs, correct?

So there is my intro :-)

I really need to get some good low carb recipies...my dietary choices have been limited since I wasn't too sure if this was it and I really wasn't ready to 'commit' to this without full labs - even with being very strict with staying away from gluten.

Kcat99


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator

I am DQ8 too! Welcome!

Lisa Mentor

This might help you with some of your questions:

Open Original Shared Link

Lisa Mentor
I am DQ8 too! Welcome!

B -

Do you remember how much the gene testing costs? I think you went through Prometheus?

lizard00 Enthusiast
B -

Do you remember how much the gene testing costs? I think you went through Prometheus?

ok, I'm not Bev, but I had it done last year through Prometheus and it was a little over $500. My insurance paid for about 200 of it... and yes, I was left with the bill. :angry:

Kcat99,

I was pretty much diagnosed based on genetic results combined with dietary results. I am completely fine with it, but do sometimes worry if I ever change doctors. But for now, I am happy.

jerseyangel Proficient

Lisa--my doctor ordered the gene testing through Quest, and my insurance paid it in full.

Lisa Mentor

Thanks Ladies. Something to look into, I think.

Yes, as Liz mentioned, Celiac Disease is often a "combined" diagnosis.


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



Celiac.com Sponsor (A8-M):



Kcat99 Newbie

Thanks everyone for the welcome!!!

Kcat

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.