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. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.