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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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    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
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    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
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