Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Afraid To Say It Out Loud


bartfull

Recommended Posts

IrishHeart Veteran

Gemini and I have an understanding that she is to pick me up on the way to anywhere she goes... :) .... so, now, 2 of us are coming.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bartfull Rising Star

YES!!! PLEASE come! I'll even close the shop for at least a day so I can be your sight-seeing guide. gluten-free restaurants in Hot Springs? Not a chance! But acutally, I HAVE eaten at Wolly's and gotten away with it. But Rapid City has lots of gluten-free places.

To get here, you would fly into Rapid City Regional airport. It's probably more expensive to fly into Rapid than it would be to fly to Denver and rent a car, but then you're looking at a six or seven hour drive to get to the Hills.

I used to live in Connecticut so I know what you mean by paved over cow paths. One thing I think you will like about the Hills is it is halfway between being "big sky" West, and rural New England. There are a lot more trees than the video showed, and our mountains are more like New England mountains than the Rockies. It's big and it's "West", but it is also small and cozy. Simply put, it's the most beautiful place I've been in my life, and I have traveled all over this country.

So, come visit. Gemini, Irish Heart, and EVERYBODY ELSE. I want to meet ALL of you and thank you in person for all you have done for me!!

lucky28 Explorer

Yay! So glad to hear that your hard work and struggle is finally paying off!

IrishHeart Veteran

I used to live in Connecticut so I know what you mean by paved over cow paths. One thing I think you will like about the Hills is it is halfway between being "big sky" West, and rural New England. There are a lot more trees than the video showed, and our mountains are more like New England mountains than the Rockies.

So, come visit. Gemini, Irish Heart, and EVERYBODY ELSE. I want to meet ALL of you and thank you in person for all you have done for me!!

This born and bred Bostonian and die hard NOO ENGLANDAH would love to meet you someday, too! I will remember your offer.

;)

love2travel Mentor

YES!!! PLEASE come! I'll even close the shop for at least a day so I can be your sight-seeing guide. gluten-free restaurants in Hot Springs? Not a chance! But acutally, I HAVE eaten at Wolly's and gotten away with it. But Rapid City has lots of gluten-free places.

To get here, you would fly into Rapid City Regional airport. It's probably more expensive to fly into Rapid than it would be to fly to Denver and rent a car, but then you're looking at a six or seven hour drive to get to the Hills.

I used to live in Connecticut so I know what you mean by paved over cow paths. One thing I think you will like about the Hills is it is halfway between being "big sky" West, and rural New England. There are a lot more trees than the video showed, and our mountains are more like New England mountains than the Rockies. It's big and it's "West", but it is also small and cozy. Simply put, it's the most beautiful place I've been in my life, and I have traveled all over this country.

So, come visit. Gemini, Irish Heart, and EVERYBODY ELSE. I want to meet ALL of you and thank you in person for all you have done for me!!

What a tremendous thing to be able to say that about where you live. Unfortunately I cannot - it is not a pretty town whatsoever. Except for our park which I love but it is not very established so the trees are not large. However, our house in Croatia is a different matter. That is our piece of paradise. An old stone house nestled in thick forest surrounded by olive groves and vineyards and the Adriatic Sea - a far cry from our highly industrialized oil town!

Anyway, I believe I mentioned to you awhile ago that I have been to the Black Hills (saw the Passion Play) and really enjoyed the beauty of the area.

elleystar Newbie

Hey, small world, I am a ways north of you up in Spearfish!

I still never got the MRI. Some friends were talking about a benefit party for me but when our local no-kill animal shelter burned to the ground (they lost 11 dogs and one cat), I put on a benefit party for them instead. Then smene else did too. And after that there was ANOTHER benefit party for them (Can you tell we lve animals here?) People are benefitted out, at least for a while.

But the way I'm feeling right now, I really think that whatever it is, it's going to go away and never come back.

This was really sad. People rallied to support them though, I heard donations were coming in from all over the world. That was very selfless of you to put on a benefit for the shelter instead of yourself!

sreese68 Enthusiast

And I am HAPPY. I don't mean the kind of happy you feel when something good happens. I mean the kind of happy that has me waking up in the morning looking forward to the day, knowing it's going to be a good day no matter what happens.

Now, I think I'll go run a marathon or something. Maybe build a bridge, fight a forest fire, or invent something that will insure world peace. I've got to do SOMETHING with all this energy! :lol:

I love you all!!!

So thrilled for you!! I think finally being HAPPY after not having that for years was one of the nicest surprises I had! So glad it happened for you, too!

I took my new energy and went tandem skydiving. Twice. So much fun!!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Hey, small world, I am a ways north of you up in Spearfish!

This was really sad. People rallied to support them though, I heard donations were coming in from all over the world. That was very selfless of you to put on a benefit for the shelter instead of yourself!

Maybe one of these days we can get together. There is a really good Indian restaurant in Rapid that is gluten-free and most of their stuff is corn free too. I could meet you there and we can talk about our diets, and our beautiful Hills, and hey - we can even gossip about some of the folks on this forum! (Just joking :lol: )

Yeah, it was heartbreaking when Tonia's burned down, but the one good thing that came out of it is the raised awareness. I just hope that when she is done rebuilding people keep in mind that she ALWAYS needs donations. 90 dogs can go through a lot of food quickly!

So, when our friends come out to visit we can take them to the Needles Highway and to Spearfish Canyon. They are my two favorite places in the world. And some time when you make it down to Hot Springs, you'll have to stop and see me at the music store. I'll even share my lunch if you don't mind eating my lousy cooking!

bartfull Rising Star

So thrilled for you!! I think finally being HAPPY after not having that for years was one of the nicest surprises I had! So glad it happened for you, too!

I took my new energy and went tandem skydiving. Twice. So much fun!!!!

I'm too old to try skydiving now, but if I were younger...

But happy? Oh yeah. Between feeling lousy and the emotions involved with taking care of and then losing my friend, I haven't played much music in the past seven months. But last Thursday I wrote a new song and suddenly I feel REALLY alive again!

It feels so good to feel good!!

My wish is that every single member of this forum, and those who haven't even found us yet, will someday feel as good as you and I do now.

dani nero Community Regular

My wish is that every single member of this forum, and those who haven't even found us yet, will someday feel as good as you and I do now.

Amen to that :-)

Gemini Experienced

What a tremendous thing to be able to say that about where you live. Unfortunately I cannot - it is not a pretty town whatsoever. Except for our park which I love but it is not very established so the trees are not large. However, our house in Croatia is a different matter. That is our piece of paradise. An old stone house nestled in thick forest surrounded by olive groves and vineyards and the Adriatic Sea - a far cry from our highly industrialized oil town!

Anyway, I believe I mentioned to you awhile ago that I have been to the Black Hills (saw the Passion Play) and really enjoyed the beauty of the area.

OK folks...sounds like Croatia will be next on the bucket list! Sounds heavenly...... :D

Bartfull....I am in the midst of a move into my new home and it's supposed to happen by end of July so travel right now is not an option BUT there is always next year and I really want to come and see your home. What a great description and I can picture it very well. I like trees...... ;)

love2travel Mentor

OK folks...sounds like Croatia will be next on the bucket list! Sounds heavenly...... :D

Yes, it is heavenly. Almost hard to imagine. Even more difficult to express in words! You will just have to come and see it. My cousin who was born and has lived in Germany his entire life has traveled to over 100 countries and he maintains Croatia is his favourite. :)

Gemini Experienced

Yes, it is heavenly. Almost hard to imagine. Even more difficult to express in words! You will just have to come and see it. My cousin who was born and has lived in Germany his entire life has traveled to over 100 countries and he maintains Croatia is his favourite. :)

Well, if I knew that you and I would be cooking all the food, I'd be happy as anything to come to Croatia! My biggest fear when traveling to out of the way places is getting sick or lack of good food to eat. Not a problem in your kitchen! Bed and breakfast for Celiacs has got to be a HUGE, untapped market!

I should really do this in retirement.......

IrishHeart Veteran
Bed and breakfast for Celiacs has got to be a HUGE, untapped market!

I should really do this in retirement.......

I am waiting for you to retire so we can do this.

Lawd knows we have enough talent in this group alone to run one, feed them well and entertain them nightly while we all sip our wine....

we have artists, musicians, cooks, bakers....O mama,

we could make a fortune, meet more wonderful celiacs and live happily ever after.

elleystar Newbie

Maybe one of these days we can get together. There is a really good Indian restaurant in Rapid that is gluten-free and most of their stuff is corn free too. I could meet you there and we can talk about our diets, and our beautiful Hills, and hey - we can even gossip about some of the folks on this forum! (Just joking :lol: )

Yeah, it was heartbreaking when Tonia's burned down, but the one good thing that came out of it is the raised awareness. I just hope that when she is done rebuilding people keep in mind that she ALWAYS needs donations. 90 dogs can go through a lot of food quickly!

So, when our friends come out to visit we can take them to the Needles Highway and to Spearfish Canyon. They are my two favorite places in the world. And some time when you make it down to Hot Springs, you'll have to stop and see me at the music store. I'll even share my lunch if you don't mind eating my lousy cooking!

WaitWHAT? A gluten-free Indian restaurant in Rapid? Do you mean Curry Masala?

bartfull Rising Star

WaitWHAT? A gluten-free Indian restaurant in Rapid? Do you mean Curry Masala?

Yes! A while back there was a "gluten free festival" in Rapid and all of the restaurants that had gluten free menus were there with food. I was rather limited because of the corn intolerance, but I still ate well, and some of my favorites came from Curry Masala.

The festival was wonderful. There were several mini seminars, one with a compounding pharmacist, one on gluten-free kids, one on testing, all kids of informative stuff. I hope they do it again.

Gemini Experienced

I am waiting for you to retire so we can do this.

Lawd knows we have enough talent in this group alone to run one, feed them well and entertain them nightly while we all sip our wine....

we have artists, musicians, cooks, bakers....O mama,

we could make a fortune, meet more wonderful celiacs and live happily ever after.

Don't hold your breath....at the rate this economy is going, it's going to be a while before I retire. However, when it happens, you'll be the first to know. Soemone will have to cover the breakfast because I am NOT a morning person. I can cover the wine hour in the afternoon...... ;)

dani nero Community Regular

I am waiting for you to retire so we can do this.

Lawd knows we have enough talent in this group alone to run one, feed them well and entertain them nightly while we all sip our wine....

we have artists, musicians, cooks, bakers....O mama,

we could make a fortune, meet more wonderful celiacs and live happily ever after.

Don't let this just simple chitchat! :-O It sounds like the perfect place for a vacation! You should establish it in Croatia or italy! I would definitely come to it every year!

IrishHeart Veteran

I can cover the wine hour in the afternoon...... ;)

Now see, this is the problem....ALL of you will want the afternoon wine hour shift and I'll be stuck with the breakfast shift. :angry:

I want WINE TOO!!!!!! :lol:

IrishHeart Veteran

Don't let this just simple chitchat! :-O It sounds like the perfect place for a vacation! You should establish it in Croatia or italy! I would definitely come to it every year!

This is where we need LOVE2TRAVEL---she has the place in Croatia!!!!

bartfull Rising Star

I can't drink wine so I could take the breakfast shift - IF I were a morning person. But I can play guitar for you. :)

IrishHeart Veteran

I can't drink wine so I could take the breakfast shift - IF I were a morning person. But I can play guitar for you. :)

That works, honey!!

I KNEW I'd get the breakfast shift anyway. :)

squirmingitch Veteran

Awwwww, that's okay; I'll take the breakfast shift as long as someone else makes the pastries & breads. Then I'll be happy to serve them up as well as cook bacon, eggs, sausage, grits, ham...whatever. As long as the guests don't expect me to make morning chit chat. I tend to be on auto pilot in the morning. Than I'll go take a nap & join y'all for wine later.cool.gif

IrishHeart Veteran

Awwwww, that's okay; I'll take the breakfast shift as long as someone else makes the pastries & breads. Then I'll be happy to serve them up as well as cook bacon, eggs, sausage, grits, ham...whatever. As long as the guests don't expect me to make morning chit chat. I tend to be on auto pilot in the morning. Than I'll go take a nap & join y'all for wine later.cool.gif

AHA!! Now,I'm all set. Here's my breakfast shift partner!

I'll take the pastries and breads, sweetie!

and Lawd knows, I've got the chit-chat. :lol:

I'll be sunning myself in the afternoon and joining you all for wine later, too.

Okay, we have the plan...who has the $$$$$$$$$ and the place?

elleystar Newbie

Yes! A while back there was a "gluten free festival" in Rapid and all of the restaurants that had gluten free menus were there with food. I was rather limited because of the corn intolerance, but I still ate well, and some of my favorites came from Curry Masala.

The festival was wonderful. There were several mini seminars, one with a compounding pharmacist, one on gluten-free kids, one on testing, all kids of informative stuff. I hope they do it again.

Bummed that I missed that!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,015
    • Most Online (within 30 mins)
      7,748

    CravingADonut
    Newest Member
    CravingADonut
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.