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

Megan's Gagging Isn't Any Better


TCA

Recommended Posts

key Contributor

That is awesome Megan gained 13 oz! That is alot! Glad the scope went well and you are home.

Monica


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



Celiac.com Sponsor (A8-M):



  • Replies 882
  • Created
  • Last Reply
Fiddle-Faddle Community Regular

Hi, Tanya,

How is everything today?

mart Contributor

THANK GOD! :)

Judyin Philly Enthusiast

how are you and Megan doing today? Just checking in.

judy in philly

TCA Contributor

Sorry for taking a while to post. I took Meg to see her great grandparents one more time before surgery. She was feeling so good yesterday, but things went downhill fast today. She was so lethargic and was sweating heavily and turning blue around her mouth. We came home a day early. Once we got home and she saw her daddy she seemed fine. I think she's trying to give me a heart condition too!!!!!

We did hear from the surgeon's office today and have a new surgery date for 7/25 with a backup date in august. That's still a bit flexible.

I hope all of you are doing well. Hopefully she'll continue to feel good tonight and we can all rest well!

Hugs,

Tanya

Judyin Philly Enthusiast

glad you posted. wow that must have been scarey for you. Glad she perked up when she got home.

is the surgery on the 25 for her heart?

I'll mark the date on the calendar.

hope you can sleep well --all of you.

hugs and prayers

judy

mouse Enthusiast

Hi Tanya. When you did not post I was concerned that things were not going well. Isn't that terrible that we expect you to be tied to the computer and not have any life at all. Glad to hear that you did a normal thing even if she had a few problems. Still saying prayers for a great Mom and wonderful Megan.


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



Celiac.com Sponsor (A8-M):



TCA Contributor

I appreciate you wanting to hear. I should have posted that I was going out of town for a couple days. My husband's grandparents are still relatively healthy, but have a hard time getting around. He wanted me to take her down to see them before surgery. They just love her so much. it's about 3.5 hrs. away so we got dr. permission first. I'm glad they got to see her, but it's much easier to manage everything from home!!!

7/25 is for heart surgery. sorry I wasn't more specific. The surgeon is out of town until 7/17 on vacation, so we'll see what he says when he gets back. Part of me is anxious to get it over with and part is dreading it terribly. I guess it's coming either way.

Cheri A Contributor

((Tanya)) ~ I'm so glad that you were able to take her to see her great grandparents! The blue lips sound very scary, but I'm happy that she got better when you got her home. Marked my calendar too for the surgery!!

Judyin Philly Enthusiast

HI

THIS IS GREAT YOU DROVE ALL THAT WAY TO TAKE MEGAN TO SEE THEM. KNOW IT MEANS SO MUCH TO THEM...

I KNOW YOU TRUST THE SURGEON AND KNOW THE SURGERY IS A MUST...SO GUESS IT'S GOING TO HAPPEN SOONER OR LATER AND DON'T THINK THEY'D DO IT NOW IF THEY DIDN'T THINK SHE WAS STRONG ENOUGH SOOOOO GUESS....YOU JUST HAVE TO 'JUMP IN' AND PRAY ALOT AND WE'LL BE HERE PRAYING ALONG WITH YOU..WORKED LAST TIME..NO REASON IT WONT AGAIN. MEGS SEEMS LIKE A FIGHTER TO ME--JUST LIKE HER MOM

HUGS AND PRAYERS FOR CONTINUED HEALING TILL AND THROUGH THE 25TH.

JUDY

VydorScope Proficient

Would it be too much to ask for a daily update? :D

TCA Contributor
Would it be too much to ask for a daily update? :D

Not at all. I just don't want you guys to get tired of hearing from me!!! Meg didn't have a great night with the choking. She had 2 spells where she started turning blue, but her color came back right as I was about to take her to the ER. I'm calling the cardiologist tomorrow to talk about all of this. She's sleeping a lot more and very lethargic. She also is breaking into sweats a lot for no apparent reason. We considered taking her to church this morning, but Jarod and Cole went on without us because she's just so tired and fussy. She's sleeping now. She just doesn't feel good very much anymore. I'm beginning to be really glad that they moved up surgery. I think she's telling us it's time.

Guest Robbin

I will mark it on my calendar too and will be praying daily for her. If you cannot post daily, maybe every other, but we WANT to hear from you. You are doing a great job under great pressure. Love & Prayers to you all. :)

AndreaB Contributor

Tanya,

You know, it's interesting that Megan was fine and flew threw the tests last week and now she's not doing well again. Could it be the hand of God saying, "no, the heart surgery need to be first"? I too like to have updates as you are able to post them. She sounds like a sweet little girl whom I wouldn't mind meeting if we were in your area (we are in WA state). Glad she's a fighter, that will help her continue to fight and get through surgery. Did I read right that she has to undergo surgery for her heart as she grows? May God continue to grant you and your family the strength to continue through this trying time. I'm sure you know this verse, but I want to end with it. "Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart; and ye shall find rest unto your souls. For my yoke is easy, and my burden is light." Matt 11-28-30. Also, "Cast thy burden upon the Lord, and he shall sustain thee: he shall never suffer the righteous to be moved" Psalm 55:22 and "Casting all your care upon him for he careth for you" 1 Peter 5:7.

Judyin Philly Enthusiast

Not at all. I just don't want you guys to get tired of hearing from me!!! Meg didn't have a great night with the choking. She had 2 spells where she started turning blue, but her color came back right as I was about to take her to the ER.

tanya,

I know it's stressful and one more thing for you to do...but we don't ever get tired of hearing from you...

i ck at least 3 times a day to see if you post and if you don't i worry....so when you can..we want and are anxious to hear how things are going.

last nite must have been so scarey ...just a long list of 'scarey' right????

I agree, think the time is right...she seems to need it now and glad they are moving it up.

we love ya mom

take care and give Meg's a kiss for me.

Judy

TCA Contributor

Thanks everyone for the support and prayers. I'm now glad they're moving it up too. Let's just get it over with since we know we have to do it anyway and I hope and pray it makes all the difference in the world in her health. Some of the drs. seem to think so. some don't, but I have faith that it will. I have to!

Thanks for the scriptures Andrea. I grew up in a small church and the first scripture was a song we often sang. It gives me comfort for sure. I wish we could meet too, but we're pretty much on opposite sides of the continent! I guess we're lucky to have met here.

Meg is so clingy now. She never wants me to put her down. I guess she's telling me she doesn't feel good. It's hard because I have to put her down to do some things, like pump. I would sit and hold her all the time if I could, though. Anything to make her more comfortable.

mouse Enthusiast

I agree that we all want updates, if you can find the time. We are all concerned for Megan, you and your family. Hang in there as the operation is right around the corner. Prayers and Hugs coming your way.

Cheri A Contributor

((Tanya)) ~ I also agree that I check on here for your updates and want to know how Meg and you are doing. hugs and prayers!!!

TCA Contributor

Well, I called the local cardiologist this morning and have a 10:00. I don't really like him, but he's the only one in town, so trying to work with him. Hopefully he'll have some answers as to why Meg is feeling so bad. She had another bad night and feels bad this morning. I'll let you all know what he says....

Judyin Philly Enthusiast

Tanya, sorry about your nite..glad you can get in..hope he will impress you today prayers for a good productive and helpful visit with dr.

you know we look for your posts so when you find time a short fast note..or a vent note ..what ever you need will start prayers now.

have to ck your time zone

hugs and prayers and love

judy

Fiddle-Faddle Community Regular

Hang in there, Tanya--we're continuing to wish on stars and sending prayers and love...

TCA Contributor

Just wanted to let you all know that we're back at Vandy. They want to observe Meg to see what may be going on. She's hooked up to everything now and not happy about it. so far she hasn't had any spells, so we'll see how long they want to observe her. Surgery may be iminent, but we don't know yet. They're doing lots of tests. Her surgeon is out of town until Sat., so I hope they can wait til then. The kitchen has been great about working with the dietary restrictions. I basically had a salad with lettuce and tomato tonight, but at least I knew it was safe! They really are kind about all of it. Thanks for the prayers. I feel like we're in the hurry up and wait game. I'll check back in tomorrow.

Guest Robbin

Thank you for checking in with us. Megan is the reason I have been checking here every night lately. I am fervently praying for your precious little one and for you for strength and health too.

AndreaB Contributor

Boy Tanya, poor Megan. I don't want her to have another spell but I would rather she have one while she's hooked up so they can try and determine what is wrong. Our thoughts and prayers continue to be with you.

VydorScope Proficient
Just wanted to let you all know that we're back at Vandy. They want to observe Meg to see what may be going on. She's hooked up to everything now and not happy about it. so far she hasn't had any spells, so we'll see how long they want to observe her. Surgery may be iminent, but we don't know yet. They're doing lots of tests. Her surgeon is out of town until Sat., so I hope they can wait til then. The kitchen has been great about working with the dietary restrictions. I basically had a salad with lettuce and tomato tonight, but at least I knew it was safe! They really are kind about all of it. Thanks for the prayers. I feel like we're in the hurry up and wait game. I'll check back in tomorrow.

I hope you brought our phone numbers! We stand by ready to help (err... *runs off to get cell phone* )

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. - trents replied to Rejoicephd's topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

    2. - trents replied to xxnonamexx's topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - Rejoicephd posted a topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

    4. - xxnonamexx posted a topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,319
    • Most Online (within 30 mins)
      7,748

    Mamadook07
    Newest Member
    Mamadook07
    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

    • trents
      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
×
×
  • 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.