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):

sick

rstavo

Recommended Posts

rstavo Newbie
rstavo
Posted

My daughter has been sick for five years.  She was originally diagnosed with Stomach Migraines.  She has nausea, stomach pain, bloating, she gets dizzy spells and motion sickness.  She has trouble with her cycles. She's lost a lot of weight. She has had trouble with Iron and Calcium.  She has trouble eating in general. Last time she saw the doctor she said  I just get sick every time I eat.  The dr ran a Celiac panel with came back with positive EMA and the TTG-IGA was weak positive at 9   So she had biopsy which they said was negative.  In the meantime I took a Celiac panel (I have milder symptoms)  mine came back different instead they flagged my TTG-IGG as higher then usual it was  a 7 (range is 0-5).  I don't understand the difference between the Two TTG tests .  What do the two types mean?  Also if her biopsy is negative and her blood work shows something and she is sick all the time what could it mean?  Is there a disease that looks and acts like Celiac and shows similar blood work but isn't. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome!

what has your doctor advised?  The EMA is really specific for celiac disease.  Are you sure she had the complete panel?  Did they run the DGP IgA or the DGP IgG?  

Open Original Shared Link

how many biopsies were taken?  The minimum is four and more is better..  Even then, celiac disease can be patchy and the small intestine is vast.  If stretched out -- larger than a tennis court!  

Was she tested for IgA deficiency?  In the case of celiac disease, this test is used to determine if any of the celiac disease IgA tests work (control test).  Not to mention that many Celiacs actually are IgA deficient.  Some doctors go ahead and run the IgG tests concurrently.  Those are typically run if the patient is deficient in IgA.  

So, the biopsies could be negative because they missed damaged areas.  She might be like me where only the DGP test work.  I always test negative to the common, but very good screening TTG (both IgA and IgG).  Finally, they should rule out Crohn's, etc.  Did they screen for anything else during the endoscopy?  Like SIBO, H. PYlori, etc?  

Your result?  It is tough.  It might indicate a sensitivity.  You should ask for the entire panel too.  Some celiac never test positive on ANY celiac blood tests!  

Consider the gluten-free diet only after you are satisfied with the testing results.  There are a lot of questions and I would address those before changing diet.  But in the long run, it could solve all your health issues!  That is what is really important! Good health.  

 

rstavo Newbie
rstavo
Posted
  • Author

Thank you her TTG IGA was 9.  They flagged it by writing an H after it. 

tessa25 Rising Star
tessa25
Posted

I'd go to a gastroenterologist if the doctor isn't one. A high on one test is supposed to indicate celiac. You're saying she had a high on one test, but a negative on endoscopy. I hear because she's a child you need a positive diagnosis for school for some reason. I thought a blood test high and positive response to a gluten free diet would get you that diagnosis, but I could be wrong.

If it were me at some point I'd try a strict gluten free diet for at least a month and see how she feels. If she feels much better (kids heal quickly) you have your answer.

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):

  • 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...