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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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    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
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