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

Rachelville 2


Rachel--24

Recommended Posts

nikki-uk Enthusiast

Great news!!!

Enjoy camping!! :D:D


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



Celiac.com Sponsor (A8-M):



  • Replies 1.7k
  • Created
  • Last Reply
2Boys4Me Enthusiast

Whew. Glad to hear he's all right.

Better you than me camping...I do have to do a scout bottle drive tomorrow morning, I think the forecast is for sunny and 7. I have my fingers crossed.

jerseyangel Proficient

Oh Sandy, that is the absolute best news! :D:D

AndreaB Contributor

Sandy,

A big sigh of relief.

Have fun camping! :)

2kids4me Contributor

Thank you everyone - so good to share great news!

Linda - you mean you guys didnt have enough fun selling popcorn? :D

AND that the wind wont be blowing either - the other day, I thought our railings were going to blow off, the school flagpole snapped and I tried to walk my dog (nature calls) and she was getting buffeted around.

I only have to camp one night, they have someone out there for tonight and after I drop off stuff for our church tea and bazaar - I am grabbing my bedroll and heading out.

Sandy :)

2Boys4Me Enthusiast

Ha Ha. We only did one block. Luckily the people at my and my husband's office are pigs. Family, too. The thing that bugged me about popcorn is the guy made it sound like it was mandatory to go door to door and it turns out it's optional.

I remember the first bottle drive. We were thinking What! He's been a Beaver for a day and he has a bottle drive? :blink:

Ty has hockey tomorrow morning, but I'd rather not risk the weather in January or March, so I'll be out there sorting by myself until he shows up to help.

Holy cow! That wind! Any damage down there? We were okay.

2kids4me Contributor

we had some damage to eavestrough, other houses had shingles blown off, one tree toppled into a garage. We had semis everywhere parked in town.. at least 5 were in the ditch to the west and south of us... so when truckers got here - they stopped!

They always push the door to door cause it increases sales = more money to the big guys. We did pretty good here - we only have 5 beavers, 2 cubs and 7 scouts... we sold close to $9,000 in popcorn!!

Sandy


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
GOOD NEWS!!!!!!!!!!!!!!!!!!!

Bone scan normal! So the part of his femur that looked abnormal is not "active" whcih means he must have, at some point in the past banged his thigh hard enough to cause a bit of bone reaction. Not sure when, but he IS a boy! :D

YEAH

AWESOME!!

What a relief Sandy.....thats great news. :)

Have fun on the camping trip!

I LOVE camping.....its one of my favorite things. :)

Daxin Explorer

Sansy, that's great news!!! Hope the camping goes well.

Well folks, I'm going to be rather inactive for the next month or so. I am off on a course that I need for my career advancement, and will be limited in my internet use for a while.

I want to wish you all a very happy Thanksgiving, and to wish you all the warmest start to your HUGE holiday seasons.

Talk to you all as soon as I can,

Ryan

jerseyangel Proficient

Warmest holiday wishes to you and your family, Ryan!

Take care--we'll be here when you get back :)

AndreaB Contributor

Good to see you Ryan, although briefly. I've been wondering if you were still with us.

We'll be here when you can return. :)

TinkerbellSwt Collaborator

Hello all... I havent been around too much again.. I hope everyone is doing well

Sandy.. glad to hear all turned out well!

Ryan.. good luck! see you when you get back.

  • 4 weeks later...
Daxin Explorer

Well, I am back, but now have 50 odd pages of unread posts to wade through.

It's good to be home.

nikki-uk Enthusiast
Well, I am back, but now have 50 odd pages of unread posts to wade through.

It's good to be home.

Welcome back Ryan - it must be great to be home!! :):)

jerseyangel Proficient
Well, I am back, but now have 50 odd pages of unread posts to wade through.

It's good to be home.

Ryan! Nice to have you back! When you get a chance, you'll have to fill us in--hope your assignment is going well.

Bet the family is so-o-o happy that you're home :D

AndreaB Contributor

Welcome Back Ryan!

Hope all is well with you. Updates when you can. :)

  • 4 weeks later...
2kids4me Contributor

Its nice to be here in Rachelville. I have been unable to get to the site becasue I had an old version of explorer which kept telling me - page is unavailable. Fixed it so now I can see I have 61 pages to sift thru!

My mother in Law passed away last week and we had the funeral 2 days ago. Very hard on kids as this grandma lived close by and adored the kids and spoiled them as Grandmas are supposed to do. She was in ICU for 5 weeks when they decided to discontunue life support. She died of complications related to heart meds. Apparently a drug called Amniodarone can cause lung scarring.

And just because life is never dull, Kathryn has bilirubin and protein in her urine, GP here did basic liver function tests and said ' Oh there all fine. That was Dec 28/06. I asked for a referral to pediatrician and still waiting, so called and asked them to check on status of referral.

I had asked that autoimmune hepatitis be ruled out and he (the doc) gave me "the look" and said:" well those tests are very expensive". Yeah okay, so refer me please to someone who deals with chidlren who have multiple immune mediated illnesses and then we'll see. I lalso know that bilirubin in the urine is the earliest sign of a problem in the liver (a problem with red blood cells has been ruled out).

SIGH....................

and THEN at the funeral, at least 3 relatives on my husband's side of the family all assure me that the children will "outgrow" celiac..... because THEY did! So I said bluntly - you dont outgrow celiac, you can still have ongoing damage but no outward symptoms. I ended it like that cause a funeral is no place for the debate - they are all adults, I have enought to deal with..

I really do wish Rachelville existed in a physical form and I could move there.

Sandy

2Boys4Me Enthusiast

Sigh, Sandy, what a rough time you've had. ((hug))

Good luck with getting to a pediatrician quickly.

nikki-uk Enthusiast

Oh boy Sandy - you have had alot to deal with! :(

I'm really sorry for your loss.

Hope you get some answers for Kathryn - gosh it's alway's something to worry about with kids isn't it? <_<

..and as for the relatives who've 'outgrown' celiac disease....*sigh*...well you can only try and correct them! :blink:

Yes..in Rachelville you would not have to deal with such people!! :lol:

AndreaB Contributor

Sandy,

I'm sorry about the loss of your MIL. That's got to be tough dealing with that on top of the "outgrow celiac" and Kathryn.

I hope you can get in to see the ped. soon and get some testing to get things ruled in or out.

HUGS.

2kids4me Contributor

Thank you all for such quick replies of support and empathy!! This is such a wonderful place. Just reading them has boosted my spirit !! :):)

Sandy

Rachel--24 Collaborator
Its nice to be here in Rachelville. I have been unable to get to the site becasue I had an old version of explorer which kept telling me - page is unavailable. Fixed it so now I can see I have 61 pages to sift thru!

Sandy,

I dont know what I would do if I couldnt access this site. :blink:

Glad that you got the problem fixed and we're glad to see you back here. :)

Sorry about all that you've been going through....I guess when it rains it pours. :(

I hope the Dr.s can figure out whats going on with Kathryn and I'm very sorry about the loss of your MIL.

Daxin Explorer

Sandy,

My thoughts and prayers to you and you family. It is never easy when things seem to all pile up at once like that.

I hope you find some answers for Kathryn quickly! :)

If Rachelville existed in a real way, I think we would ALL benefit from a move.

Please keep us posted.

Mtndog Collaborator

Sandy- I'm so sorry about your loss and your experience at the funeral. :(

I hope that everything turns out OK with Kathryn. I'll keep you all in my thoughts and prayers.

Judyin Philly Enthusiast

SANDY..SO SORRY FOR YOUR LOSS AND THE FUNERAL EXPERIENCE

HUGS COMING YOUR WAY.

I'M SO GLAD TO SEE RACHELVILLE BACK UP AND RUNNING. I HAVEN'T CK'D THE LAST FEW PAGES AT ALL...JUST GLAD TO SEE YOU GUYS AGAIN.

MISSED YOU ALL.

LET'S KEEP THIS ACTIVE, OK.

JUDY IN PHILLY

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal.  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) the small intestin in Celiac Disease and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  Why is poorly understood.  In fact, it wasn't even know that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So as part of your symptoms you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were sypmptos. Our western diet has many deficiencies build into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks for symptoms can come on quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, and indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog, deficient choline, iodine, thiamine. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study    
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
    • Scott Adams
      I am only wondering why you would need to cut out rice? I've never heard of rice being any issue in those with DH.
×
×
  • 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.