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Yet Another "cinderella" Story?

FaithInScienceToo

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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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      My only proof

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  • Posts

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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