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

For Lynne - Tiredofdoctors


mouse

Recommended Posts

mouse Enthusiast

the doctor thinks she has more crushed discs from the bad fall last week. she gets an MRI tonight.

this is also a bump.

i can't wait until i can use two hands to type. i hope i don't forget how LOL.


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



Celiac.com Sponsor (A8-M):



  • Replies 112
  • Created
  • Last Reply
happygirl Collaborator

armetta,

I just got home from johns hopkins and had an endo/colonoscopy....hadn't been on in the past two days so I just saw this. will it be ok if i write it this weekend?

Laura

mouse Enthusiast

laura, i just sent you an email. thank you for doing this.

i hope your tests went well and that you are not in too much discomfort.

also turtle, i sent you an email. and i appreciate your effort on behalf of lynne.

happygirl Collaborator

haven't received a PM or email yet

Turtle Enthusiast

No e-mail from you yet on my end either....

My letter is ready....so e-mail me at the e-mail address I PM'd you so I can send the letter to you! Thanks!

happygirl Collaborator

got it...thank you. xoxo

mouse Enthusiast

thanks for letting me know laura that you received it.

turtle did you finally get yours. i am going to bed now, but i will check in the morning to see if you got it.


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



Celiac.com Sponsor (A8-M):



Turtle Enthusiast

YES!!! I got it!!

Everything should be in your e-mail inbox when you check it in the morning!!

Mtndog Collaborator

i am SO in! If you want I can post my letter here to give other people ideas as I've never actually met Lynne in person, but somehow that doesn't seem to matter. :D She's crazy amazing and I shudder ti imagine how fabulous she is in person!

Just checked the website for Extreme Makeover Home Edition (ABC) and what they want to know if you are nominating someone is: What is you family's CURRENT situation and how does it affect your family's home? Why do you need a makeover? What makes you deserving? What makes your situation unique?

Rachel--24 Collaborator
i am SO in! If you want I can post my letter here to give other people ideas as I've never actually met Lynne in person, but somehow that doesn't seem to matter. :D She's crazy amazing and I shudder ti imagine how fabulous she is in person!

Beverly.....I need ideas. I wanna write a letter...I dont know alot about Lynne except that she's very funny, kind and we both love scrapbooking. I need help....

jenvan Collaborator
i am SO in! If you want I can post my letter here to give other people ideas as I've never actually met Lynne in person, but somehow that doesn't seem to matter. :D She's crazy amazing and I shudder ti imagine how fabulous she is in person!

Just checked the website for Extreme Makeover Home Edition (ABC) and what they want to know if you are nominating someone is: What is you family's CURRENT situation and how does it affect your family's home? Why do you need a makeover? What makes you deserving? What makes your situation unique?

She is pretty fab in person :) I'm one of the few lucky ones that gets to hang out with her on occasion!

mouse Enthusiast

thank you beverly for the wonderful email letter. i can open attachments if they are attached priperly - he he. i am such a computer nurd LOL.

rachel, just speak from the heart. most of the people who are sending me letters have not met lynne in person, but only here on the forum or some talk to her on the phone.

i watched one show where a town nominated a family. so on the part of the form that asks who is nominating lynne, everyone's name will go there. then on the cover letter in the signature part will also be everyones name. momma goose is going to help me with the cover letter. i think all of the signatures will be attention grabbing and that is what we need as they get thousands of letters a week. they also do not let you know if they have received the application and video. so, i will use a signature required delivery card. i am also making back up copies of everything in case it gets lost in the mail. if they accept you, it might be up to two months before they call. karen thinks we have a good shot, since celiac is in the news. what i hope is that i can get this in the mail immediately after thanks giving. i want us to be first. dave has forms to fill out and a video to take. then needs to send them to me.

thank you also turtle for a fantastic letter.

and listen everyone, they do not all have to be fantastic. THE IMPORTANT THING IS THAT THE LETTER COMES FROM THE HEART.

mouse Enthusiast

bump

lonewolf Collaborator

I've only PM'd Lynne a couple of times about things on the board, but have always appreciated her positive outlook and encouragement. I'm thinking about writing a short note - would that help?

Do you still need help copying the email into a post? It's really easy and simple to explain.

mouse Enthusiast

somehow or other i deleted lynne's list of all the neuro diagnosious (sp). i had printed it out for the application, but i guess i was over zealous about deleting so many emails. when i feel up to it, i will try and type the main ones in.

and any letter, no matter how short is welcome. could you please do it as a attachment. i thank you on behalf of lynne.

Lisa Mentor
somehow or other i deleted lynne's list of all the neuro diagnosious (sp). i had printed it out for the application, but i guess i was over zealous about deleting so many emails. when i feel up to it, i will try and type the main ones in.

and any letter, no matter how short is welcome. could you please do it as a attachment. i thank you on behalf of lynne.

Try looking for it in your "Trash Folder"?

mouse Enthusiast

lisa, i am such a clean freak, that i empty my trash right after i delete.

here is the list:

gluten ataxia

occulomotor apraxia

word retrieval disorder - caused from the cerebellar damage

peripheral neuropathy - caused from the cerebellar damage

autonomic disfunction - inability to sweat (when goes out into the summer heat, she is literally cooking her muscles and organs) includes sporadicblood pressure changes with extreme lows where the doctor himself cannot get a pressure reading; minimal to no tear production;decreased saliva production; decreased small and large intestine peristalsis; heart rhythm changes; also from the cerebellar damage.

dysphagia - difficulty swallowing - same cause

dysarthria - difficulty talking - starts slurring her speech and the tongue goes into spasticity - same cause

raynaud's pheonomenon

psoriatic arthritis - now being questioned by the geneticist as ankylosing spondylitis

ehler's danlos syndrome

fatty liver disease (she thinks that sounds funny)

polycystic ovary disease

hyperinsulinemia

metabolic syndrome

and then she lists all of the areas that have been damage from her falls. the damage has been permanent.

mouse Enthusiast

bump

Guest nini

bump for a great cause

Mtndog Collaborator

And I BUMP you again! :P

2Boys4Me Enthusiast

Just had to pop in to say: Beverly, what puppy isn't for sale? The picture is you and ?

Mtndog Collaborator
Just had to pop in to say: Beverly, what puppy isn't for sale? The picture is you and ?

My hubby! my last pic was me and Merrick- a dog I befriended in Costa rica and underneath it said "How much is that doggy in the window?" so when I put up my hubby, I cahnaged it cuz he's not for sale. Just being silly! :P

2Boys4Me Enthusiast

Zoom! That went right over my head. :lol: I knew that the last one was you and a dog, and I'd forgotten your tagline. So he's a keeper, eh? Got him trained up just nice.

mouse Enthusiast

please everybody, lets keep this thread on topic. this is very serious and we need to get lynne and dave that extreme makeover for their home.

she sees the doctor today to find out what the MRI says. the last fall was very serious.

she has a bug right now and feels worse then lousy. she sleeps a lot and is taking percocet for the pain from this last fall.

mouse Enthusiast

bump

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.