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):

Celiac or not?

Rachel171

Recommended Posts

Rachel171 Newbie
Rachel171
Posted

One gastroenterologist  at Kaiser said I tested positive so I have Celiac, I ran the results by my daughter's doctor today and he said I do not have Celiac and that he thinks the IgG test shouldn't even be used anymore.  I am so confused as to whether or not i have it.  I am being tested because my daughter was diagnosed with Celiac recently.  
Here are my results:

TISSUE TRANSGLUTAMINASE IgG 1.44 Index <=0.90 Index
Tissue transglutaminase IgA 0.33 Index <=0.90 Index

I would really appreciate any input you have.
Thank you!

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Your GI is right and your daughter's doctor is wrong!  You have a positive.  DId they run a an IGA deficiency test?  It is a control test that  tells the doctor if the IGA versions of the test is accurate.  Ask your GI (not your PCP to run the complete celiac panel.  PCP doctors at Kaiser can not order the complete celiac panel.  You had just the screening.   I suppose your GI might have skipped the IGA deficiency test since he ordered both the TTG tests.  

Personally, I had a positive on just the DGP IGA and all then rest were negative yet I had moderate to severe intestinal damage. What I am saying is that it took just one positive!  

i would make sure even your GI is celiac savvy.  The Kaiser website doctor directory will give a bio.  Make sure the doctor you are working with states that he specializes in Celiac Disease.  If he is not, try to find another GI.

so, request the entire panel, then ask for an endoscopy making sure they take at least four tissue samples.  

Here is a link to the University of Chicago's celiac website for more info:

Sorry, you are going to have to google it.  

cyclinglady Grand Master
cyclinglady
Posted

Oh, how did your daughter test out?  Was her TTG IGG positive too?  

Rachel171 Newbie
Rachel171
Posted
  • Author
13 hours ago, cyclinglady said:

Oh, how did your daughter test out?  Was her TTG IGG positive too?  

They didn't give me the detailed results for my daughter.  They just said her number was really high at 64.  I'm trying to get a 3rd opinion at Kaiser but they don't make it easy.  I have to make and appointment weeks out and come in to talk with another doctor.

cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, Rachel171 said:

They didn't give me the detailed results for my daughter.  They just said her number was really high at 64.  I'm trying to get a 3rd opinion at Kaiser but they don't make it easy.  I have to make and appointment weeks out and come in to talk with another doctor.

Well, due to HIPPA, Kaiser probably is not going to give you your daughter's results.  But she should have those on her website page (Patient portal)  and can share them with you.  I was just curious.  

In any case, you should move forward to an endoscopy (you can push too for the complete celiac panel and ask why they did not test you for an IGA deficiency).   I assume your daughter is getting or had one.  What was her result?  This is critical in getting a proper diagnosis.  Some folks have to skip this step due to financial reasons or extreme illness, but you have Kaiser and they should be able to do it.  Again, find a celiac savvy GI doctor within Kaiser.  

Read this link about what the American GI Association recommends for diagnosing celiac disease.  Make a copy and ask why Kaiser is not following procedures (maybe they are and you are confused).

Open Original Shared Link

 The University of Chicago is another excellent source.  Arm yourself with information and knowledge.  Ask for things nicely and DOCUMENT everything using your patient portal.  I follow-up with an email each time I see my doctor and repeat the plan of action or review what was discussed.  

Keep eating gluten until the test results are in from the biopsies (four to six samples).  Get the endoscopy.  They will not only diagnose celiac disease but rule other other things like cancer, h. pylori, SIBO, etc.  It's a good measurement to have.  Keep all records!!!!!

Take care!  

 

frieze Community Regular
frieze
Posted

i am thinking the daughter is a minor child?  guardian should have access?

cyclinglady Grand Master
cyclinglady
Posted
35 minutes ago, frieze said:

i am thinking the daughter is a minor child?  guardian should have access?

Guess what?  My kid is 15 and I can no longer access her records even though she signed a waiver/authorization form two years ago for the patient portal.  Had to get her recent lab results via snail mail.   No time to deal with the portal.  Geez, we pay the bills but it is the law!  

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted
1 hour ago, cyclinglady said:

Guess what?  My kid is 15 and I can no longer access her records even though she signed a waiver/authorization form two years ago for the patient portal.  Had to get her recent lab results via snail mail.   No time to deal with the portal.  Geez, we pay the bills but it is the law!  

That must be a California law because here in Massachusetts, it's 18.  15 is ridiculous......you're her mother!  :huh:

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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...