Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hello New Here

SillyYakMom

By SillyYakMom
in Coping with Celiac Disease

Recommended Posts

SillyYakMom Rookie
SillyYakMom
Posted

Hello, I will introduce myself. My name is Jessica and I am married with a 20 month old daughter Emily. I have been diagnosed with celiac since I was 11. There are 10 kids in my family, all who have celiac disease. My mom's dad died of Chrone's disease when he was 33 and my mom was 6. We have all had to deal with it and learn how to cook gluten-free so that we could when we were older. The youngest child has it worse than all of us. She can't have eggs, nuts or even a spec of gluten or she is covered in DH. We waited until Emily was a year old to give her any gluten. She has not shown any symptoms until recently. She gets hives on her face right after eating something high in gluten. It doesn't last long, but concerns me. We are thinking we should get her tested just in case.

The University of Maryland has mine and all my families blood for celiac testing and sends us all sorts of interesting stuff on it. Anyway, I look forward to getting to know all of you and supporting each other with dealing with celiac disease.

SillyYakMom

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Welcome to the board :)

I am sure you will find the people here to be supportive and knowledgable. Feel free to contact me if you ever need anything.

Do you see Dr. Fassano at the University of MD? I live in MD...from your post I assume you do but I am not sure because so many people travel just to go there.

SillyYakMom Rookie
SillyYakMom
Posted
  • Author
Welcome to the board :)

I am sure you will find the people here to be supportive and knowledgable. Feel free to contact me if you ever need anything.

Do you see Dr. Fassano at the University of MD? I live in MD...from your post I assume you do but I am not sure because so many people travel just to go there.

<{POST_SNAPBACK}>

Actually I don't live in MD I live in UT, but they came to our house and took all of our blood and sent it there. Since this was many years ago and a newly known about disease they were willing to bend backwards for us, even swallow any cost.

Rusla Enthusiast
Rusla
Posted
Hello, I will introduce myself. My name is Jessica and I am married with a 20 month old daughter Emily. I have been diagnosed with celiac since I was 11. There are 10 kids in my family, all who have celiac disease. My mom's dad died of Chrone's disease when he was 33 and my mom was 6. We have all had to deal with it and learn how to cook gluten-free so that we could when we were older. The youngest child has it worse than all of us. She can't have eggs, nuts or even a spec of gluten or she is covered in DH. We waited until Emily was a year old to give her any gluten. She has not shown any symptoms until recently. She gets hives on her face right after eating something high in gluten. It doesn't last long, but concerns me. We are thinking we should get her tested just in case.

The University of Maryland has mine and all my families blood for celiac testing and sends us all sorts of interesting stuff on it. Anyway, I look forward to getting to know all of you and supporting each other with dealing with celiac disease.

SillyYakMom

<{POST_SNAPBACK}>

Welcome to the board, I have found it being helpful here. I hope you enjoy being here.

kevsmom Contributor
kevsmom
Posted

Welcome to the board, Jessica -

I hope that you will find everyone as helpful and supportive as I have.

Having dealt with this yourself for so many years, you probably have a lot that you can share with us.

It's amazing how far medical research has come. My father was diagnosed with Ulcerative Colitis 30 years ago, and became so sick he had to have an iliostomy. My brother and I were both diagnosed with Celiac Disease as adults. It really makes you think what the results would have been if my my father had been tested.

I have only been diagnosed for 6 months, and have learned so much from this board. I feel like everyone here are my friends, and they understand. :)

jenvan Collaborator
jenvan
Posted

hey there! welcome! this is a great place you've joined...

jerseyangel Proficient
jerseyangel
Posted

Hi and welcome! You will find that this is a caring and supportive place to come with questions or just to be around others who know what you're going through. I know it was a Godsend for me when I stumbled on it right after my diagnosis.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.