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

For Lynne - Tiredofdoctors


mouse

Recommended Posts

Mtndog Collaborator

I thank all of you. Armetta for getting the ball rolling even when she felt yucky, Lisa and Laura- for compilig everything. If they get this I am so flying down to Lou-ville for thaat week. :D


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



Celiac.com Sponsor (A8-M):



  • Replies 112
  • Created
  • Last Reply
Rusla Enthusiast

Armetta, Lisa, and Laura, I want to thank all of you for thinking of this for Lynne and Dave. I don't know how many letters you rounded up. I do hope they take it to heart what we have all said. Not only does Lynne need this but she deserves this.

Lisa Mentor

Armetta, I thank you for your gift of compassion, generosity and the knowledge of "it's just the right thing to do". Good things happen, to good people making it happen.

Thoughts to you, Lisa

Lisa Mentor
Armetta, Lisa, and Laura, I want to thank all of you for thinking of this for Lynne and Dave. I don't know how many letters you rounded up. I do hope they take it to heart what we have all said. Not only does Lynne need this but she deserves this.

Just to clarify........Armetta is in command, Laura and I are the ground crew. Metta., has the yucks, so we are the stand ins. :blink:

Thanks and yes she does.

Turtle Enthusiast

I think it's really great how everyone came together and made every effort to help out on this project!

Thanks to Metta and her ground crew for all their hard work and organization!!

Keep us posted!!!!

num1habsfan Rising Star

Hmm does that mean I missed the cut-off? :blink:

~ lisa ~

  • 4 weeks later...
angel-jd1 Community Regular

Just curious if They made the cut??

-Jessica :rolleyes:


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I should have posted this earlier:

All the little pieces are coming together and they should be ready to submit VERY soon. It is a technical process and full of lots of detail. Hopefully, within a week or so, the whole package will be sent off and submitted.

All of those who care or have written a letter, it is a gift that you bring. Thank you :)

Armetta, is force behind this project. Hopes and prayers could make it happen. But, lets get there first.

Lisa

I will post with any news or updates.

Mtndog Collaborator

No one deserves it more than our Lynne! :rolleyes: :rolleyes:

debmidge Rising Star

is there still time for more? I got bombarded at work and didn't get to my letter...

happygirl Collaborator

Deb, if you want to get it to me soon, I can include it! I'll PM you my email.

xoxo

  • 3 weeks later...
angel-jd1 Community Regular

Any updates? Did they make the cut. They should be hearing back by now I would think. This was all done forever ago :)

-Jessica :rolleyes:

Lisa Mentor

Lynne and Dave have been sick with the flu and Lynne had a bad case of pneunonia and is recovering and feeling better. They are looking for a good sunny day to arrange the video.

Lynne, you can chime in here......... :D

Laura has done a great deal of work getting the letters in perfect submission. Thanks you so much Laura for you hard work and a lot of you private time.

Armetta has the package ready to go when the video is complete.

We are wishful, for Lynne. It would be soooo cool.

Armetta or I will let you know when the package has been submitted and you guy will be the first (well, second) to know!

Lisa

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
×
×
  • 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.