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Yet Another "cinderella" Story?


FaithInScienceToo

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KaitiUSA Enthusiast

FaithInScienceToo-Yes I can see how you made your decision. Your reasons make sense and if you want to go for it. They need to be alerted somehow on what not to give you.

How was the day with your 4 year old niece? Little kids are so cute :D

Talk to you all later :D


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flagbabyds Collaborator

I wear my medic alert everywhere because I am bery high compeditave in soccer, and if it is an away game, and my parents aren't there, and I get hurt,(which has happened...) I would make sure that everyone knew what i could/couldn't have, and if I can't talk, then the bracelet is a way of conveying it to them

celiac3270 Collaborator
I wear my medic alert everywhere because I am bery high compeditave in soccer, and if it is an away game, and my parents aren't there, and I get hurt,(which has happened...) I would make sure that everyone knew what i could/couldn't have, and if I can't talk, then the bracelet is a way of conveying it to them

I see your point, but I would think that if something really bad happens to you, you want people to give you whatever you need to get better--then you can deal with a gluten reaction.

mela14 Enthusiast

Hi Faith,

Welcome to the board and good luck to you! I have a lot of the same intolerances and soy is a definate NO. I had the York allergy testing done which helped me to fine tune what I should be watching..It's still a challenge though and I have slips.

Eggs came up the strongest in so far as allergies and those seem to have been what I reacted a lot to! Milk also kills me. So....what I'm saying is that you could have a lot of other intolerances as a results of your celiac disease.

I recently started estrogen replacement (vivelle dot) and it has helped so mcuh with the night sweats and migraines....That could be part of your problem as you are perimenapausal. I had a total hysterectomy 2 years ago and was never put on any estrogen. It only messed me up more. So....I am fising one thing at a time.

Keep us posted as to how you are doing! Good luck with your new love interest too!

That in itself could be exciting!

FaithInScienceToo Contributor

Happy Sunday, all:

Thanks for the new posts, and continued warm welcomes!

I SO enjoy hearing your stories...reading your recollections of 'the bad stuff' makes me feel 'not so alone'...but, I most enjoy hearing of your triumphs!

"We, go, girls!" :) oops...and guys, too, 'out there' in cyber space....

Kaiti...thanks for asking about my day yesterday with my 4-year-old niece, Anna...

It was fun. I first took her to visit her "Nana and Poppy" - my folks (ages 76)...we brought Valentine's flowers and a balloon with love birds on it to them...

and then we went to one of my Bros and his family, so that she could play with my other little niece, Sarah, who is 3 years old. When we first arrived, my sis-in-law had to feed the baby, and my bro went out to buy pizza (luckily, I brought alone food I could eat)...so, I played soccer with the girls, and chase, of course...Having 2 little kids chase me around the backyard was a joy...

In the car on the way to my folks' house (a 50 minute drive) Anna and I talked about the various holidays that occur throught the year. She enjoyed trying to remember the order they come in...When I got to Memorial Day...well, it was, of course, the hardest 'holiday' to discuss...She had a lot of questions about war...I ended that part of our talk with, "I only hope that when you and the other little children grow up, we, and all of the other coutries in the world, won't be starting any more wars..."

Ugh...guess I'm back to 'politics'...didn't mean to...but, that was the 'most poignant' part of the day with my dear niece, so sharing it seems appropriate...

I most enjoy teaching her about love...at every opportunity I can.

Thanks for asking, Kaiti.

and....Thanks, everyone, for 'being there' -

Gina

FaithInScienceToo Contributor

Just wondered...do some people on here contact each other 'off the board?'

Via e-mail...for more personal support?

Just curious -

Gina

celiac3270 Collaborator

I do--I periodically e-mail/PM 3-4 people from the board, and exchange frequent e-mails/IMs with one person from here....I think I've made a few good friends so far-- :)


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tarnalberry Community Regular

I've gotten a couple emails, maybe a dozen or two in the year I've been here. Nothing particularly regular, myself, but that's pretty standard for me.

flagbabyds Collaborator

I converse with a lot of people

KaitiUSA Enthusiast

FaithInScienceToo-That is awesome you had a good time with your niece. I bet it was fun to just spend some time with her and your family :D

I talk to a few people from this board online. I like talking to people and building relationships. If anyone wants to IM me or email me they can :D

MySuicidalTurtle Enthusiast

I PM/E-mail a few people, some are in my local support group, and one I bug when I am visiting his city.

There are good people here!

mela14 Enthusiast

I've had contact with a few people form this board and all were very helpful and encouraging. That's what were here for.

  • 2 weeks later...
des1713 Newbie

Mariposa Brownies -- the triple chocolate truffle -- are bar none the ABSOLUTE BEST gluten-free brownie/baked good I have tasted. You could serve them to non-gluten-free people and they's NEVER know the difference.

I am on my second order from Mariposa. They are high quality gourment, as reflected by the price, but soooo worth it!!! I have tried the mixes and some store bought brownies like Crave Bakery in SF and NOTHING is even close to the Mariposa. I think the trick is they do not use a lot of flour so they are super mosit.

I am so happy I have discovered Mariposa Brownies!!!

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    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
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