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Yet Another "cinderella" Story?

FaithInScienceToo

Recommended Posts

KaitiUSA Enthusiast
KaitiUSA
Posted

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
flagbabyds
Posted

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
celiac3270
Posted
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
mela14
Posted

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
FaithInScienceToo
Posted
  • Author

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
FaithInScienceToo
Posted
  • Author

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
celiac3270
Posted

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
tarnalberry
Posted

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
flagbabyds
Posted

I converse with a lot of people

KaitiUSA Enthusiast
KaitiUSA
Posted

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
MySuicidalTurtle
Posted

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
mela14
Posted

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
des1713
Posted

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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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