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

Tiredofdoctors - Lynne


mouse

Recommended Posts

jerseyangel Proficient

Armetta, Thanks for this piece of good news!

I hope you feel better soon :)


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



Celiac.com Sponsor (A8-M):



  • Replies 105
  • Created
  • Last Reply
DingoGirl Enthusiast

Oh! Yes, Armetta, thanks! Keep us posted.......will keep praying. :)

mouse Enthusiast

Thanks Patti, but this is normal for me. A 5 or 6 on the pain scale I can live with, but a 7, 8 or 9 requires my pain meds. My weekly chiro visit helps.

But, I felt so bad that here Lynne calls with some good news and a dead monkey answers the phone. The phone call was short and I went back to sleep thanking God and thinking about the power of prayer.

VydorScope Proficient

Tanks for the update!!!!

CarlaB Enthusiast

Thanks for the update, that's great news!

Lisa Mentor

Hey Lynne:

If I don't talk to you before tomorrow...MAY THE FORCE BE WITH YOU!!!!!!!!!!!!!!!!!!!

VydorScope Proficient
Hey Lynne:

If I don't talk to you before tomorrow...MAY THE FORCE BE WITH YOU!!!!!!!!!!!!!!!!!!!

and "street cred" too! :lol:


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

:lol::lol: Street cred :lol::lol:

Sorry Lynne--we're a bunch of nuts, as you know! :P

aikiducky Apprentice

Ooh, that's good news! :) I have no idea what our time difference is...maybe the doctors appointment has been already. I'll be rooting for you over here, though!

Pauliina

Cheri A Contributor

Hi.. just wanted to say that I am saying a prayer for you and your doctor today!

tiredofdoctors Enthusiast

LIFE IS GOOD!!!!!!!!!!!!!

I have an artery that is a little looped too much, but not enough to require surgery. There is NO aneurysm -- it was part of the loops!!!!!

The symptoms that occur when I flex my chin to chest are apparently due to the vertebral artery in my neck being kinked, and then occluded with the flexion. He feels that the change, and the "kink" probably happened during one of my harder falls. I've had several, but Dave and I could easily list four last night that were pretty significant. One, in particular, was when I fell forward off the porch and took a header into the grass. Another one was the calla lilies . . . I think we all remember that!!! :blink: Stupid things -- only three came up last year, and none this year. Hmmmmmph. So, there is a list . . . . . . . .

The difficulty with trying to correct this is multifold. 1) I have a bleeding disorder that has caused me to bleed excessively with each delivery, after and during surgeries, miscarriages, etc. It's because of the Ehler's-Danlos. 2) The angiogram would require opening the femoral artery -- usually not a problem because I've had a cardiac cath and it wasn't bad -- just had to stay lying down with compression over it for a little longer than normal. Evidently, though, because it is active, it would require me to be standing (?) and he said he just isn't comfortable with that 3) The surgery is pretty risky -- it's not the usual surgery and takes about twice the time that you would think a "normal" neck surgery would take. It also has only a 50/50 chance of correcting the problem permanently.

I told him that I wouldn't have the surgery if it was 50/50 even if I DIDN'T have a bleeding disorder! He agreed. So, it was kind of "I went to the doctor and told him it hurts when I do this. He said, 'Don't do that.' " EXACTLY WHAT I WANTED TO HEAR!!! All I need to do is set up things in my house so that I am not positioning myself with my head bent down. Granted, I'm making it sound as though it's going to be the easiest thing in the world, and realistically it's going to be a little harder than that. HOWEVER ---- I don't care -- I'll do that! And, my friend Jeanette, who is an Occupational Therapist had a very "pointed" conversation with me and convinced me that I AM worthy of a home makeover. I told her that everyone who had received one had done something outstanding, and I didn't think that I had. Let's just say I got the message LOUD and clear.

I was really comforted by the nurse-practitioner who did the majority of my visit. She spent at least one hour with me. She said that she strongly felt that the bizarre pupil response that I have is due to the autonomic dysfunction. She explained so many things to me that had been ignored by the other doctor. I was really impressed with her. She has been treating solely neuro patients for 8 years now, and she was really knowledgeable. She also "validated" that the things that I have seen that I KNEW were not normal neuro responses. She didn't give me that "I think you're crazy" look. She even would say -- "I found this - have you seen it before?" when something was not normal. How affirming is that, when you HAVE seen it, but were blown off when you asked the doctor?! She was outstanding. She did say that, because I have such poor control of my left eye, and given the pupil response being abnormal, I really SHOULD get a muscle biopsy. She said that the neuro-opthmalogist is absolutely right. She also said that she knew what I was talking about when I told her what the neuro . . . wanted to do if it's muscular. She said that I should get the biopsy pretty soon. She said I need to talk with the precertification person at the surgeon's office and tell her HOW to get the biopsy done as an inpatient so that I don't have to owe tens of thousands of dollars -- which is what would happen if it was done as an outpatient. Go figure.

So, by and large, I have gotten really good news!!!!! Still have a few 'loose ends' to tie up -- and a few more answers to get, but NO BRAIN SURGERY and NO NECK SURGERY!!!!!!!!!!!!!!!

WOOOOOOOOOOOHOOOOOOOOOOO Time to celebrate!!!

Thank you, THANK YOU for your prayers, for your good thoughts, for that candle that stayed lit ;) , and for everyone who has been so uplifting on this board. You guys are simply the best.

Love to you ALL,

Lynne

VydorScope Proficient

YAY!!!

jerseyangel Proficient

This is so good to hear, Lynne! :D

Any news on that makeover?

Lisa Mentor

SO GLAD YOU RECIEVED GOOD NEW TODAY...(wispering "told ya so")

pedro Explorer

Yesssssssssssssssssssssssssssssss excellent news

Thanks the heavens.

angel-jd1 Community Regular
This is so good to hear, Lynne! :D

Any news on that makeover?

I agree jerseyangel...........sounds like Ty needs to get ya called and made over already!! Holey moley girl!! I pray that extreme home makeover picks up your story so that life would be easier on you! You have so much spirit and kindness and plain old "just deserve" this makeover!! Did you guys ever get the tape sent in?

YEAH for the good news!!!! Happy dance! Please don't celebrate by jumping (or falling face forward) off of the porch into your lillies :P

-Jessica :rolleyes:

Cheri A Contributor

GREAT NEWS! Congratulations!

Kyalesyin Apprentice

Sounds like an excuse to party if you ask me!

CarlaB Enthusiast

wooohooo!

tiredofdoctors Enthusiast

Sounds like an excuse to party to me, too! Since I walk like a drunk, I always wondered if I actually GOT, well, a little more than tipsy, would I walk NORMALLY????!!!!! Found out the hard way in Vegas with Metta & Chris. It's Chris' fault for bringing the New Grist and ordering the last bottle of wine. That's my story & I'm stickin' to it. :P

mouse Enthusiast

Everything was sent in the end of March and Lynne has not received a call yet. We can only hope and keep praying. I used a green return card and so I know they received it.

VegasCeliacBuckeye Collaborator

Soooooo,

Vegas is back on?

aikiducky Apprentice

Woohoo! Nice to come home to such good news! :D

Lynne, you have such impressive sounding problems, I almost had to get a dictionary for the eye things. :blink::)

Pauliina

Nantzie Collaborator

Oh, I'm so excited for you!!! That's wonderful news.

Hugs, hugs, and more {{{HUGS}}}!!

:D:D:D

Nancy

Canadian Karen Community Regular

So........

Does this mean there will be no exploding at 10,000 ft.?

:lol:

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.