Jump to content

  • 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):

Non-Gold Standard Dx Or No Dx--Which Is Better?

BlessedMommy

Recommended Posts

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

I talked with my mom on the phone and I again asked her to please consider celiac testing. Crossing my fingers and hoping that she does eventually--for her sake as well as for mine.

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

Yeah, part of the reason I did my gene test was for my family, both my parents and my children.  Now they know something about their genetics whether they do anything now or not.

 

Dee

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Did your test cover the alpha and beta parts of it? Do you mind if I ask you what your results were?

  • 2 weeks later...
1desperateladysaved Proficient
1desperateladysaved
Posted

I had 2 sets of DQ2 and two sets of DQ8.  Does alpha and beta refer to father and mother, because I don't understand the question.  My genes came from both sides of the family!  The lab I used used a swab method and is based in Sweetwater Texas.  I had a very good experience,  They did some interpretation of my test results.  I showed mine to my MD along with my symptoms and reaction to gluten free diet.  She said that I have celiac and should never eat gluten again.  Another doctor seemed to doubt my diagnosis until she questioned me and found that nutrient levels had been low, but rose to good in time.  That is one of the reasons that I like testing nutrient levels.

 

Dee

StephanieL Enthusiast
StephanieL
Posted

Here's the thing:  1) you know you feel better now 2) you have no way of reliably getting tested (even if you DID test + for the genetics does not 100% mean you have Celiac) 3) you aren't a kid where you need a dx for accommodations.  

 

You have been given the same advice on several threads over several weeks and I've not seen anyone saying anything any different about what you can do at this point. I know you want to know for your kids and I totally understand that.  Are they insured?  If affording it is an issue and depending on where you are, they should be able to get insurance through the state you live in and then you can get them tested if they need it.

 

As for you needing a dx to take when you are away for a weekend....I don't get it?  If you can't eat something, you say no. Bring your own food as you do now.  Getting a letter from your Dr. isn't something I've heard of any adults do unless it was for work (like the military.  

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Very true. I guess that I'm sort of "thinking out loud" through these issues. 

 

My kids do have state insurance, so on the next visit I will be talking to their doctor about the specific issues that I'm concerned about, in regards to their diet.

 

I suspect that I'll need to print out some information and take it with me, to show him.

Archived

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

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

  • Member Statistics

    • Total Members
      134,078
    • Most Online (within 30 mins)
      10,442
    Hmom
    Newest Member
    Hmom
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...