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):

Self Diagnosis/new Doctors


teddylab

Recommended Posts

teddylab Rookie

Gosh, I am so sick of explaining myself to doctors! I have been to so many in the last few years it has done my head in!

After my last run in with one who refuses to look at anything but my blood pressure and pregnancy tests, I decided to just give up and take my own self diagnosis.

I gave up eating most gluten (a few things I wasn't aware of snuck in there!) and I felt GREAT. I haven't been blated or sick, I get up early and don't have trouble sleeping. No going to the toilet every half hour, and I have had so much energy.

I decided to try gluten again after 2 weeks to see if I had any reaction. The first day I was fine - the second day I was so so very sick. I had some of the worst stomach pains, and could not move. I was so bloated I felt like a helium balloon. I couldn't sleep and had terrible anxiety.

After all of this I plan on going gluten free, but first I am going to a celiac specialist I found close by. I am so excited and hopeful, I can't wait for my childhood GP to send me my referal!

I really hope that this will give me some closure, or at least point me in the right direction.

I'm also really scared - I hope this is the source of all my problems. What do you think?

medical background

* Failure to thrive - baby/infant

* Father also had failure to thrive for unknown reasons as a boy

* Small bowel biopsy as a baby revealed scoured/burnt villi

* Depression/anxiety caused by suspected chemical imbalances

* Joint problems including TMJ

* Constant stomach issues all my life - always put down to illness/flu


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



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

I think you should have been diagnosed as a baby if you had blunted villi back then! Many here, including myself, can relate to your frustration of being dismissed byy doctors. I went through so many I began to wonder if maybe I just really WAS a hypochondriac. Since being dx with celiac my health has done a complete 360. I never dreamt I could just feel WELL! It keeps getting better too! You are definitely on the right track. Make sure you keep scarfing gluten until your tests are done though- for some, recovery cN happen too fast and mess up your tests!

teddylab Rookie

I think you should have been diagnosed as a baby if you had blunted villi back then! Many here, including myself, can relate to your frustration of being dismissed byy doctors. I went through so many I began to wonder if maybe I just really WAS a hypochondriac. Since being dx with celiac my health has done a complete 360. I never dreamt I could just feel WELL! It keeps getting better too! You are definitely on the right track. Make sure you keep scarfing gluten until your tests are done though- for some, recovery cN happen too fast and mess up your tests!

Thanks :) I find it amazing too that I wasn't diagnosed!

tom Contributor

...

medical background

* Failure to thrive - baby/infant

* Father also had failure to thrive for unknown reasons as a boy

* Small bowel biopsy as a baby revealed scoured/burnt villi

* Depression/anxiety caused by suspected chemical imbalances

* Joint problems including TMJ

* Constant stomach issues all my life - always put down to illness/flu

Don't forget

* Changes from recent 2wks gluten-free & reaction from 2 days gluten challenge.

It's part of the medical history now.

Good luck w/ the doc!

teddylab Rookie

Don't forget

* Changes from recent 2wks gluten-free & reaction from 2 days gluten challenge.

It's part of the medical history now.

Good luck w/ the doc!

Thank you, I'll make sure to include it!

Archived

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

  • 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
      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
      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
      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
      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
      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...