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):

My Story

ameslaw84

Recommended Posts

ameslaw84 Newbie
ameslaw84
Posted

I haven't been diagnosed yet, but am in the process and will be going gluten free no matter what the results say. This will be long, but I wanted to share it.

This started about 2009. I was a roughly normal girl in my 20s, I do have a rare bone disorder that limits me to a wheelchair, but I was able to take care of my self all day while my husband worked. In about May of 2009 I started falling asleep in my chair everyday around 1 or 2 pm. This was extremely unlike me as I was always the one to get up at 5am and be awake till midnight. I also started not being able to do as much for myself, my body was tight and I just wasn't able to move good.

Later that year I came down with panic attacks. They got so severe that I could not leave the house. I started on medicine to try and get better, and it did help. During this time I also took naps everyday because my husband was home (he got laid off) and was able to help me into bed. I attributed it to the panic attacks tiring me out.

About the time I started the medicine I also started having bad gastro issues. I would be fine all day, then have diarrhea for a few hours. I would take something for it, but my stomach would stop working basically and I would have severe pain and throwing up. I eventually went to the doctor about the anxiety still being there, and was diagnosed with severe Vit D deficiency.

Fast forward to last year. We moved to a new state. I was still having gastro issues and sleep problems, but a new problem started, a severe itchy rash that no one could figure out. The first doctor thought it was staph, so I was on antibiotics for a while. I also was tested for a lot of auto immune and was eventually diagnosed with hypoglycemia. I had a 6 hour glucose test and my glucose went from about 70 to 156 in 30 minutes, then at the end of it dropped suddenly again. I was put on a low card diet (which I only did for a few weeks). During the low carb diet I felt great. I was able to stay away all day and was sleeping great.

My rash went away, and now came back. I am again always tired. I can wake up at 11:00am and want to be back in bed by 12. It is horrible. I also am constantly getting sick, either throwing up or having diarrhea. I went to the doctor, he has no idea what the rash is and has referred me to a gastro.

I found this site and posted on the DH board, because when I saw the rashes there it was exactly like mine. I have since called my doctor and asked if he can do the celiac panel himself so I don't have to wait. I am ready to go off gluten.

Anyway, I wanted to give my story and say hi to everyone.

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

Celiac.com Sponsor (A8-M):


Bubba's Mom Enthusiast
Bubba's Mom
Posted

Hello...and welcome! Your symptoms sure seem to fit? I hope testing gives you answers. I want you to be aware though, that 20-30% of us test normal in our bloodwork. So..if you are tested and get a negative for Celiac..it would be good for you to go strictly gluten-free for at least 3 months to see if you note improvement.

There are many posts here about how to eat strictly gluten-free and avoid cross contamination.

Good luck! I hope you get the answers that help you sort all of this out. It's no good feeling so miserable.

Archived

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

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

  • Member Statistics

    • Total Members
      134,084
    • 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...