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

Rachelville 2


Rachel--24

Recommended Posts

flagbabyds Collaborator

08 08 08 08 08 08

WE BEAT THE SENIORS!!!!!!!!!!!!!!

YAY!

I NOW HAVE TO DO HOMEWORK

I WILL HAVE PICTURES UP THIS WEEKEND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


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



Celiac.com Sponsor (A8-M):



  • Replies 1.7k
  • Created
  • Last Reply
AndreaB Contributor

WooHoo! Good for your team! :D

Green12 Enthusiast
08 08 08 08 08 08

WE BEAT THE SENIORS!!!!!!!!!!!!!!

YAY!

I NOW HAVE TO DO HOMEWORK

I WILL HAVE PICTURES UP THIS WEEKEND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Congratulations Molly! Looking forward to seeing the pictures and hearing all about it :)

Jessica, what have you been up to, wild on monkey island?? Please elaborate :lol::lol:

nikki-uk Enthusiast

Hi fellow citizens!

Firstly, I must update you on my Felix (kitty).

The vet was very pleased with him this week and he is responding to the meds! :)

She thinks if he gets through the next month then he may actually have a few years in him yet but cats are notorious for going downhill fast-so fingers crossed for my furry friend !!

Secondly,my son's biopsy results came in today (I've just posted in Parents of babies and children)

and celiac disease has been confirmed.

I am pleased that we know what we're are dealing with, but I am a little down. *sigh*

Only today Alan complained that his hip and legs were hurting,and after 5 mins of running round in the garden he said he was ''too tired Mum'' ( :( )

As Alan has Downs Syndrome he just doesn't understand the ramifications of the diet, and all the negative aspects of the diet are at the forefront of my mind ( :( )

Even a silly thing today dragged me down.

My Mum was over and she wanted to buy him an ice cream (in a cone) but when I explained he couldn't have it anymore she commented that it was much harder for Alan than for Terry (hubby) and I suppose up to now -even though I knew it was coeliac,I didn't want to think about the actual specifics.

We are to be sent an obligatory appointment for the dietician ( :rolleyes: ) and you never know- maybe I can teach her a thing or two.LOL !! :lol::lol: (trying desperately to laugh at my own humour!)

I will go into his school on Monday and 'tackle' the kitchen staff and see if there's anyway they can accomodate him with a school dinner-but I think he'll probably have to have packed lunch.

This will be an oppurtunity for me to brush up on my cooking skills!!( :ph34r: )

Alan's birthday is on Wednesday , and my cake making skills weren't renound even when using gluten flour!!! :lol:

Sorry I'm so gloomy- just needed to vent. It's not the end of the world , I know, but sometimes I feel like life has dealt my son a cr@p hand :(

(Ahhh,hubby just gave me a chocolate bar-said it would make me feel better!! :D )

I explained to my eldest son (he's 17 yrs ) that Alan has definitely got celiac disease and he asked me if he could get tested as he feels he's got some of the symptoms (stomach aches ,loose stools achey bones )

OH DEAR LORD!!! (Damn those Genes!!!!)

I said I'll make an appt to go to the G.P with him in the week :unsure:

Well, I must make the effort to cheer up- I'll see what the 40ish girls are up to, and see what laughs are in the tickle me elbow thread (I need a laugh!)thanks for listening-what would I do without you :D:D

CarlaB Enthusiast

Nikki, it was harder for me when Chloe was diagnosed than it was when I was diagnosed. It's natural to feel as you do. Eat another chocolate bar!

AndreaB Contributor

HUGS Nikki.

I know it's a lot to deal with. We are holding your hand and will help as much as possible.

Hang in there.....isn't chocolate good? Not to much though or you'll get a tummy ache. :)

nikki-uk Enthusiast

Thanks girls!! :)

Carla,-LOVING those braces!!! :D

Not to much though or you'll get a tummy ache. :)

DEATH BY CHOCOLATE!!!!! :lol:

Seriously though, I feel better already getting it off my chest. :)

I'm going to try and find a suitable pic of my new coeliac for my avatar. :)


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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

new pic this is of me after the dance not in costume with my gelled hair down and really really gross.

yeah i have more i will make a photo site and i will give it to y'alls.

AndreaB Contributor

We'll hold you to that Molly. Looking forward to seeing them.

flagbabyds Collaborator

i can't do it the way i usually so where can i put pics up for free and everyone can see them>????

Guest melannen
i can't do it the way i usually so where can i put pics up for free and everyone can see them>????

I use photobucket.com, just make sure to make your album public. or you could try flicker; I haven't had any experience with them but I know my aunt loves it!

flagbabyds Collaborator

Open Original Shared Link

i didn't title them, ask if you have questions i will get more pictures later on when my friends post their and some from the game today.

flagbabyds Collaborator

anyone here?

it's slowly dying

nikki-uk Enthusiast

I'm here Molly!!

OMG ,those Sumo costumes look like great fun!!! :lol::lol:

flagbabyds Collaborator

yeah that is the last game of homcming week and the day ralley and you have the biggest guy in your year do the summo wrestling

it's really funny to watch

AndreaB Contributor

Nice pics Molly. Just looked at them. Will be looking forward to what your friends have.

flagbabyds Collaborator

new avatar it is of me at the dress rehersal in costume and with the hair but no make-up

CarlaB Enthusiast

Nice pics Molly. Looks like you had fun!

TinkerbellSwt Collaborator

Hello All!!! We are back from Disney!!!

first Congrats to Molly! WTG on the win!

Now, Disney was great! I was in gluten free heaven!! I couldnt believe it! At one restaurant alone, in the Magic Kingdom, we got the greatest chef to come out and talk to me. He could make me anything on the menu gluten free. He also told me of all the stuff I could get thru out the parks.

The only mishap we had was in Epcot. We went to the restaurant, for my son to eat, as no one else was eating b/c it was the food and wine festival. I waited 20 minutes in line for my turn. I got to the front and a not so nice employee told me there was nothing that they could do for me!!! When I asked about a gluten free hamburger roll, he showed me the ingredient list for Wonder Bread rolls and said that was it!!

I went to Guest Relations a bit upset, the manager took me back to the restaurant, spoke to the manager and got my son a gluten free meal for free! They were also willing to feed my entire family, but we didnt want it.

Enough about the food... we had a great time! Colin loved the characters! We had so much fun at the character dinner with him. It was a blast. It was completely different being there for him than it was for myself, but it was amazing to see him so happy.

I hope this finds everyone well. We are good, just very tired. I am trying to get Colin back into the swing of things here... he is resisting that a bit! I will post a new avatar soon, probably of Colin and some character. Take care everyone!!!

Green12 Enthusiast

Molly, great pictures!!! Looks like you and your friends had so much fun :)

Stephanie, welcome back :) Good to hear you had such a wonderful trip in the land of Disney, only for that one mishap, but sounds like you got it all worked out.

AndreaB Contributor

Sounds like a great trip Stephanie. How often can you rave about a place catering to celiacs?

Will wait for you to get some rest and get back into the swing of things with Colin.....but am interested in seeing the new avatar.

CarlaB Enthusiast

Stephanie, thanks for letting us know about your trip. Disney sounds wonderful ... I have been there many times, but not since diagnosed.

Daxin Explorer

Glad to hear you had such a good time Stephanie. I am planning a trip there in the next year or so. I am impressed they make it so easy to get along there.

2Boys4Me Enthusiast

Stephanie - were you in Florida or California? We are going to Disneyland in California in December. The boys know that I have bought and paid for a trip to be taken sometime "later". Glenn travels a bit for work, so we will go to the airport with the idea of dropping Dad off for a trip and then we'll just all go. Sneaky :ph34r:.

I found some info on the Calgary Celiac site and we will be phoning "Chef Chris" who is supposed to give us the lowdown on eating gluten-free. I also just ordered the Triumph cards, so that might help us out when we're not in the park.

TinkerbellSwt Collaborator

We were in Disney World. I havent been to Disneyland in years. I am sure they will be just as accomodating there. They said all their places to eat have to be. In Disney World even the restaurants that are not Disney owned, such as Rainforest Cafe, Fultons and others have to be up to Disney standards and accomodate all allergys at all times. I thought that was pretty great too!!!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - DayaInTheSun replied to DayaInTheSun's topic in Coping with Celiac Disease
      5

      Being a burden to family/friends

    2. - Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Years of testing - no real answers

    3. - trents replied to Gill.brittany8's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    4. - Gill.brittany8 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    5. - Mnofsinger replied to Mnofsinger's topic in Related Issues & Disorders
      7

      Food Tasting Salty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,833
    • Most Online (within 30 mins)
      7,748

    mcsmommy
    Newest Member
    mcsmommy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
    • Mnofsinger
      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
×
×
  • Create New...