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

I Got My Test Results...


SUZ42

Recommended Posts

SUZ42 Explorer

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

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

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
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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,870
    • Most Online (within 30 mins)
      7,748

    Chaoticcrud
    Newest Member
    Chaoticcrud
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      As I suspected, xanthan gum is one of the ingredients. It is a polysaccharide used as a texturing agent in many gluten-free products. It's hard to digest and causes distress for many celiacs. I can't say for sure if that was the problem but you might be on the lookout for it in the future. Muscle spasms can be caused by magnesium deficiency. Are you taking any vitamin and mineral supplements? I mean some things more potent than a multivitamin?
    • Wheatwacked
      Hello @Suze046 In the western world 40 to 60 percent are low or deficient in Vitamin D.  Malabsorption from Celiac Disease, avoidance of UV from the sun and seasonal variations can result in low vitamin D.  A simple 25(OH)D test will tell you your status.  Low vitamin D affects immune system, bone health, mental health.  I keep mine around 80 ng/ml (200 nmol/L). Choline has many functions in our body.  From the neurotransmitter Acetylcholine to fat digestion.  It is made by our bodies but in insufficient amount.  The major dietary source is from beef and eggs.  The RDA is 500 mg a day.  That would be equivelant to 3 eggs or 10 cups of cooked brocolli a day.  Choline is a significant portion of biliary phospholipids and is a crucial element for bile function.n.  I found taking Phosphatidly Choline capsules helps.  A homocysteine test can be indicative of choline deficiency.  Could we be overlooking a potential choline crisis in the United Kingdom? NIH Choline Fact Sheet Vitamin D Is Not as Toxic as Was Once Thought
    • annamarie6655
      @trents thank you so much for your response!  When i was diagnosed, I was exhibiting mainly joint pain, hair loss, bloating, and allodynia (painful feeling from non painful stimuli). The muscle spasms only started after diagnosis, and it seems to only happen when I am severely glutened. It’s only happened twice, but it definitely makes me nervous when it happens.    In regard to the pizza, thats what i saw after i got sick from it. I’m still trying to figure out how to switch to ALL certified gluten-free goods.    for the dressing, here is the ingredient list:  WATER, VEGETABLE OIL, VINEGAR, SUGAR, GARLIC, SALT, RED BELL PEPPER, ONION, CONCENTRATED LEMON JUICE, XANTHAN GUM, POTASSIUM SORBATE, HERBS, CALCIUM DISODIUM EDTA, MONOACETIN, SPICES. and the link: https://www.kraftheinz.com/en-CA/kraft/products/00068100903577-zesty-italian-salad-dressing  
    • trents
      Welcome to the forum, @annamarie6655! Are the muscle spasms and joint aches a new pattern of reaction to gluten or have you experienced these in the past? Concerning DeGiorno's "gluten-free" pizza, we have had many reports from celiac.com members of gluten reactions from consuming this product. I believe it is one of those "gluten-free" products that is made from wheat (speaking of the crust component) that has been processed in such a way as to remove most of the gluten. The FDA regs allow food companies to use the claim "gluten-free" as long as the product contains no more than 20ppm of gluten. This works for most celiacs but not for those on the more sensitive end of the spectrum. There is another industry standard known as "Certified Gluten-Free" that is stricter, requiring no more than 10ppm of gluten. Certified Gluten-Free products use the "GFCO" logo. Concerning the salad dressing, could you list the ingredients in another post or link it? There are certain other ingredients besides gluten commonly used in gluten-free manufactured food items to give them acceptable textures that give a lot of celiacs problems. 
    • annamarie6655
      Hello, so I was diagnosed with Celiacs about 8 months ago. After being diagnosed, I have been trying very hard to maintain a completely gluten-free (and celiac safe) diet.  Two of the main times I had a huge reaction, it was from: - gluten-free Digiorno Pizza w Pepperoni - Kraft Zesty Italian Dressing (this was in canada if that changes anything) Both are marked as gluten-free. Following eating these items, I had a severe bout of diarrhea, uncontrollable and heavy muscle spasms throughout my whole body, and aching throughout every joint.   If these are both gluten-free, why would I be reacting to them? Should I be worried about a separate allergy?  In regards to the muscle spasms, should I follow up with someone about that?
×
×
  • Create New...