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):

Is it celiac????

Sarah K.

Recommended Posts

Sarah K. Newbie
Sarah K.
Posted

April 2013: Started feeling bad like a flip of a switch during the beginning of my 3rd pregnancy 

august 2015: negative biopsy and TtG blood test 

July 2017: negative TtG, IGA, EMA, etc 

October 2017: positive DGP (50)

november 2017: HLA DQ8 positive

do I have it or not?????

I've been gluten free since October and while my bathroom situation is better I am still extremely crampy  

 

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted

Hi Sarah and welcome :)

 

1 hour ago, Sarah K. said:

do I have it or not?????

 

You had a positive test, were you not given an endoscopy appointment? That's the usual next step in diagnosis?

Did you discuss going gluten free with your doctor? 

Sarah K. Newbie
Sarah K.
Posted
  • Author

I had a negative endoscopy already. I wonder if they missed it?

cyclinglady Grand Master
cyclinglady
Posted
3 hours ago, Sarah K. said:

April 2013: Started feeling bad like a flip of a switch during the beginning of my 3rd pregnancy 

august 2015: negative biopsy and TtG blood test 

July 2017: negative TtG, IGA, EMA, etc 

October 2017: positive DGP (50)

november 2017: HLA DQ8 positive

do I have it or not?????

I've been gluten free since October and while my bathroom situation is better I am still extremely crampy  

 

Which DGP was positive?  The IgA or IgG version?  What do you mean your IgA was negative?  This is usually an Immunoglobulin A test.  When used in conjunction with celiac disease testing, it acts as a control test.  Some celiacs are IgA deficient and therefore only IgG tests should be used.  How many biopsies were taken and where?  Do you have the GI and pathologist’s Reports?  The surface area of the small intestine is larger than a tennis court.  Easy to miss damaged areas.  Was the GI’s scope able to see intestinal villi?  Did you get photos?  Was H.Pylori ruled out?  Stomach issues?  

Celiac disease usually takes a year or longer to heal because of collateral damage, the difficulty in learning the gluten-free diet, avoiding cross contamination, etc.  Three months in is such a short time, though some heal that fast!  

What did your doctor advise?  

Jmg Mentor
Jmg
Posted
46 minutes ago, Sarah K. said:

I had a negative endoscopy already. I wonder if they missed it?

Well, you have a positive test, so assuming you do have it, you are still in the early days of the diet, expect to continue to see improvements ffor anywhere from 6-12 months after you first exclude gluten.

i found the first couple of months quite ropey, good days and bad days. The general curve was up but it wasn't always plain sailing...

You may want to look at what your eating, many suffer with dairy for instance and feel better after they cut it out . its also easy to slip up on the diet or get cross contamination. Check the stickies newbie thread on this forum for some good tips that may help with that. :)

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...