Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

SillyYakMom Rookie

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

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
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
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

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

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

jerseyangel Proficient

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,072
    • Most Online (within 30 mins)
      7,748

    3rdearesl
    Newest Member
    3rdearesl
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...