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):

Lost on Results

MadFuriosa
 Share

Recommended Posts

MadFuriosa Newbie
MadFuriosa
Posted

The last time I saw my doctor was a brief visit and we didn't get to discuss but he said that I am celiac and handed my results that said

IgA - TTG high

Endomysial negative

Symptoms: fatigue, MAJOR bloat, weight gain 

I decided to try going gluten free since I can't see him for another month to even discuss further testing and my symptoms are gone! It's only been 3 weeks but I feel like a different person and I'm losing weight which I haven't done in 8+ years despite trying everything.

I am afraid he will suggest a endoscopy with biopsy since I feel so good and I'm also not sure it would be necessary at this point? I'm also not sure what to ask him when I do see him? Or should I stop my trial just in case?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

The proof is in the pudding. You have a positive tTG-IGA and you feel much better after cutting out gluten. What more do you need? Ask the doctor to write in your medical chart that you have celiac disease and tell him you feel no need for the biopsy. He himself has already said you have celiac disease. Just ask him to put it in your chart.

Scott Adams Grand Master
Scott Adams
Posted

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

trents Grand Master
trents
Posted

It would be nice to have in your medical record so other doctors you may go won't look at you sideways when you tell them you have celiac disease.

frieze Community Regular
frieze
Posted
On 12/15/2022 at 5:41 PM, Scott Adams said:

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

This is, of course how it was done before the money making biopsy came into play...

trents Grand Master
trents
Posted
27 minutes ago, frieze said:

This is, of course how it was done before the money making biopsy came into play...

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Wheatwacked Veteran
Wheatwacked
Posted

Looks like a duck, quacks like a duck. You get sick eating gluten. If the doctor can't prove that it is, are you planning to eat gluten? Not proving it is, is not the same as proving it is not. Be sure to get enough of all the essential vitamins; especially D and you'll do fine. The hard part is dealing with the social abuse.

 

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted
On 12/17/2022 at 12:21 PM, trents said:

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Go back further, it was trial and error.  Endo, 1956.  Gliadin testing 1964.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    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...