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

I Got My Test Results...

SUZ42

Recommended Posts

SUZ42 Explorer
SUZ42
Posted

Hi.

I got my test results today. I said in an earlier post that I wasn't "wishing" for an illness, but if it turns out I do, I will be happy to finally have an answer for being soooo sick for 14 months. Now I have a name for how I have been feeling. Gluten sensitivity and Casein sensitivity!

Thinking back, I have been sick with this my entire life. Started taking prescription constipation meds as a baby. My first memories of my mom and dad are in the bathroom. Sick huh?

I also now know my mom had this. My sis and brother are both sick, with different things but all symptoms of GS. Also my 20 year old dtr. ADD, Asperger's, joint pain, tired, stool probs... I will get the gene test on her done. And advise my bro and sis to also.

But, here's my question: We are going on vacation in March and in June (to Disney World) should I start the new diet now or continue to be sick and wait till July to start it? I have read here how several folks went gluten free, and then got really ill if they were glutened. So?

question 2: I will be contacting the lab also, but thought someone here could help me. What is the molecular analysis, Allele 1 0302 and Allele 2 0301? And the HLA-DQ 3,3 (subtype 8, 7)?

Thanks

Suzanne

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Disney is one of the easiest places to go and eat gluten-free safely! I've heard all kinds of stories here about wonderful trips to Disney with gluten-free Mickey Mouse pancakes and other tasty food.

I've also heard that all the restaurants on the property they own have to accomodate people with food allergies.

carrielynn Apprentice
carrielynn
Posted

We went to Disneyworld about a month ago and had no problem at all with the Disney restaurants. At every single Disney restaurant we went to they brought the chef out who told my husband what he could and could not eat. At one of the restaurants they sent very hot (freshly made) gluten-free rolls to our table along with the meal. (We told every restaurant ahead of time of our food needs and our information was put into a computer so when we checked in the hostess knew what was going on.)

We were very impressed, to say the least. Disney deserves huge praise for the attention they've given to this.

kelliac Rookie
kelliac
Posted
question 2: I will be contacting the lab also, but thought someone here could help me. What is the molecular analysis, Allele 1 0302 and Allele 2 0301? And the HLA-DQ 3,3 (subtype 8, 7)?

Thanks

Suzanne

DQ3, subtype 8 is one of the main celiac genes (known as DQ8), DQ3, subtype 7 is one of the gluten sensitive genes. So you have two gluten sensitive enteropathy genes (one formally known as celiac and the other known as the catch all gluten sensitive) and all your children (if you have them) will have at least one gluten sensitive or celiac gene. This info is on the enterolab site under test interpretation, FAQ, etc. Best wishes and welcome to the celiac world!

SUZ42 Explorer
SUZ42
Posted
  • Author
DQ3, subtype 8 is one of the main celiac genes (known as DQ8), DQ3, subtype 7 is one of the gluten sensitive genes. So you have two gluten sensitive enteropathy genes (one formally known as celiac and the other known as the catch all gluten sensitive) and all your children (if you have them) will have at least one gluten sensitive or celiac gene. This info is on the enterolab site under test interpretation, FAQ, etc. Best wishes and welcome to the celiac world!

Thanks for the best wishes. I am glad I found this site. I don't feel so alone in this anymore. I talked with my sister, she has already called her doc to look into this. She is quite the gourmet cook, so giving up gluten will be really difficult for her.

My daughter is resistant to going gluten free, she's 20 so I can't make her. I asked her if she ever wants to go through what I have this past year or so. She's of the mindset it won't happen to her. Time will tell.

Turns out I am also casein sensitive. This will be more difficult to rid from my diet than the gluten, I think. It'll be trial and error for a while.

Suzanne

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
    3. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was...
    4. Amy Barnett
      - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

      What is the best liquid multivitamin for celiac disease?
    5. Scott Adams
      0

      Quick Gluten-Free Shrimp Stir-Fry With Crisp Vegetables

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      Curious question

      By Jmartes71 · Posted

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      Question

      By Amy Barnett · Posted

      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      Alarming

      By Jmartes71 · Posted

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.