Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Down, Down, Down


penguin

Recommended Posts

penguin Community Regular

I got a call from my mom last night. My 87 year old grandfather, who had valve replacement surgery the day after I went gluten-free, so 2/3 I guess, is not doing well. He had a lot of plaque in his aorta and had a bunch of teeny strokes from micro bits of plaque that got loose. He is still cognitively there, because he responds to and recognizes family, starting to get his vision back, and is trying to talk. He's breathing on his own. He answers questions with blinking and some nodding. All four limbs are at least slightly responsive.

Well, the whole medical team looked him over and had a meeting with his wife (my step-grandmother). They said that he has a less than 1% chance of going home again. Basically, it's off to the vegetable patch to wait to die. Aside from the fact that it's generally awful, he was FINE before surgery. It was a huge risk, but without it he would have had less than a year. Now he is stuck in a body he can't use, and he was so active before. He was an 35 year old stuck in an 87 year old body. He walked me down the aisle at my wedding. Now, it's like he has ALS, and progressed to the end stages in a day.

So I'm beside myself with that. He's our rock, you know? The patriarch.

In other news...

I've been gluten-free almost 3 months, and you know what? I don't really feel better. The D has subsided somewhat, but I still have pain, I'm MORE exhausted all the time. The hypoglycemia came back, and so did the burning in my stomach. I felt good for like, a month. Now I feel even worse. I feel like I have to drag my body around, I have no energy. It's not even brain fog, just exhaustion. And when I do eat gluten, I get really sick. Then I'm foggy and just generally not good for several days. I'm so careful, too. The only gluteny things in my house are the DH's cereal, and saltine crackers. He's careful that he doesn't contaminate me. It feels like I can't win, I'm going to feel like crap either way.

It's just been a rough year so far. Sorry for whining. :unsure:

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

Chelsea -- I don't think you're whining. I think you're grieving, and rightly so. I'm so sorry about your grandfather. I know that those surgeries are very risky -- when the plaques release like that, it can be dangerous. The same thing happens when they do surgery on the Carotid arteries.

Your grandfather may not have made all the recovery that he is going to, by any means. With regard to stroke patients, we don't consider them Maximum Medical Improvement until 18 months post-stroke. The brain is a marvelous organ -- it can re-route pathways to improve its function. I don't want to give you false hope, but all may not be lost. The human spirit can often overcome things that the doctors can't.

I'm sorry that you're not feeling any better since being gluten-free. Since mine is not in my gut, I don't know what to tell you about that. I'm really not qualified, experience-wise. My advice would be that it takes time for your body to heal -- depending upon how long you were sick prior to being gluten-free, three months may not be near long enough for yorur body to heal.

I hope that you feel better soon. Please know that you're in my prayers, as well as your grandfather. Remember to take care of you, Love, Lynne

Link to comment
Share on other sites
DingoGirl Enthusiast

Chelsea, so sorry about your grandfather. Sounds like he is a fabulous man....my recommendation is just to lift him up in your prayers, if you're a praying person (not trying to start any caustic religious thread here!)......and see what time does....if he was that strong before, you never know what can happen.

As for you - same thing happened to me. I felt FABULOUS for about the first month gluten-free, then slid into a black hole and have been gradually coming out of it. It really does take time, and from what I read and sense, there are ups and downs, especially in the first few months or year or so. I think we'll level out. But, grief will throw your body into another state entirely, remember that.

God bless -

Susan

Link to comment
Share on other sites
jerseyangel Proficient

Hi Chelsea--I'm really sorry to hear about your grandpa. He sounds like a 'fighter'. It's possible that he could rally--doctors have been known to be wrong before....My husband's uncle had similar surgery, and eventually did ok and lived a few more years. I will say a prayer for him.

I can relate to the not feeling better--I have been gluten-free since last June. The first 3 months were uneven--I was working out the diet and other CC issues. Had a lot of fatigue--felt like a wet dishrag. From Sept to Dec, I felt pretty good. Thought I had put the worst behind me. In Dec, I began to react to other foods. From then till just recently, I've been trying to identify and remove the offenders. Been through allergy testing, too--just to make sure. I've had to cut all dairy, soy, dried fruit, tapioca, eggs and a few others I can't remember just now. I react to the slightest amounts of CC--I hope it will eventually get better. I thought I would feel better by now, too. I guess all we can do is keep on keeping on. Sorry, I don't think I've been much help--I just whined along with you! :(

Link to comment
Share on other sites
jennyj Collaborator

Please know you and your family are in my thoughts and prayers.

Link to comment
Share on other sites
Lollie Enthusiast

Awww ChelsE! I'm so sorry about your grandfather. I can totally relate. When my dad was diagnosed with cancer, he was so active and alert. Then he had the surgery, he slipped a little, but regained. He went through radiation/chemo and didn't miss a step. But I was afraid for him on the second round of chemo....He never really recovered from the chemo. It made me sad, because before the second round he was active, surprisingly so for how sick he was. I know that doc's don't know everything. They might be wrong about your grandfather, the human spirit is stronger then anyone realises. He and you will be in my prayers.

I have been gluten-free for 3 months too! I have definantly noticed the fatigue. Don't know what that's about. Other then it just takes time to heal! Hang in there. Take some of the B-complex!!!! Maybe it will help. And give your self a break. Take care of you!

Lollie

Link to comment
Share on other sites
cgilsing Enthusiast

ChelsE

I'm so sorry to hear about your grandpa. I will keep him and your family in my prayers. Just remember (as everyone here knows), doctors don't know everything. I'll echo Lynn in saying that the human spirit is so much stonger than any doctor!

I'm sorry you aren't feeling well either. :( That makes times like these so much harder. I can relate to the exhaustion. It's awful! I spent my entire honeymoon in bed (and not doing what most honeymooners are doing in bed :P), because I was so relieved to have a few weeks that I could rest. It takes time for your body to heal....in the grand scheme of things 3 months isn't that long. Unfortunatly, this disease can be a long road to recovery....hang in there! ;)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



hez Enthusiast

ChelsE,

I am so sorry to hear about your Grandpa. Just said a prayer.

I am sorry that you are feeling bad as well. For me I did not feel better for about 6 months! Felt like an eternity. It might be that your body is still healing. The stress, fatigue and depression can make you feel horrible as well. Hang in there!

Hez

Link to comment
Share on other sites
mamaw Community Regular

I know what your going thru and its not easy knowing a loved one may soon depart from us. It took me almost two years to get through losing my Dad, it will be thre years on April 26,2006 so Again I'm having a struggle. But I will tell you that some awesome things happened while my Dad was in the process of crossing over. He spoke his last breath to me and told me he wasn't afraid anymore ( for a wek he didn't want to let go and was fighting like mad). At the end I was looking out a window and saw a bird not facing me. I was praying for a sign that he was saved and would go to heaven. At that second this bird and another swoped down before my eyes and I seen they were two morning doves, as tears filled my eyes I heard a voice saying we have come to take George to meet the angels that would carry him onto paradise where he will be made whole again. As i thanked my God for the message I cried harder as I went back to his bedside, I took his hand to tell him and he said my ride is here and he took his last breath. I have clinged to that moment ever since knowing that my prayers were answered.To this very day I have morning doves that come to me and are not afraid of me and also jester with me..... It now brings tears and smiles and laughter to because people come to visit and they comment how the doves stay so close to me and seem to be guardian like in their actions.This is a great comfort to me.

Try to respond to all the great things about your grandfather and lift him up and if you are a believer comfort will also come to you..... It still isn't easy letting go but the comfort can help carry you through...I miss my Dad evry day but evryday I see my doves and I know one day I to will take the journey and again we will be together.......

I have alway told my children from the day you are born is the day you will start to die .........

Life doesn't seem fair but we are not in control. I now will tell you that I wouldn't wish my Dad back to life on earth as he suffered so much and I know now he is at peace and I couldn't deny him that solace, even tho I miss him terribly.

I also think the more we age the easier this becomes or maybe as we age we have another perspective on life itself. Remember we all are only passing through........

Be with your grandpa and enjoy him, grandpas are very special people and it sounds like yours is a perfect one......

God Bless you at this most difficult time in your life.

mamaw

Link to comment
Share on other sites
Moongirl Community Regular

C-

THe first 3 months for me were nuts, off and on days, the burning in my stomach couldnt really explain, which i didnt have before i went gluten-free. Im going on month 5 of being gluten-free, and day by day i feel just a little better, it def takes time, it is annoying cause u just want to feel better, but just keep in mind it will happen. Your young like me, at least we still have that on our side.

Link to comment
Share on other sites
debmidge Rising Star

It's hard to watch someone you love go thru hell. Grandpas are precious. I don't pray for myself any longer but I do for others and I pray that he has a rapid recovery and obtains the healing he needs.

Link to comment
Share on other sites
ravenwoodglass Mentor

Please know that we are all here for you. I know myself and many, many others have wish we could reach out and give you a hug.

Link to comment
Share on other sites
TCA Contributor

I'll be praying for your grandfather. Doctors told my dad when I was 7 that he wouldn't live another year. He's till with us and I'm 30. Drs. don't know everything. I do hope you get to feeling better soon.

Your relationship with your grandpa sounds a lot like mine with my grandmother. She passed last Sept. and I miss her soooo much. My dad was a single parent and we lived next door to her. She's the closest thing to a mother I ever had. She was so awesome and tough and graceful and loving and kind and giving. I couldn't be with her in the end because of my daughter's heart condition and it almost killed me. She told me on the phone to "take care of that baby..." She was 94 and loved the Lord with all her heart, so I know where she is now. I just miss her sooo much.

About 3 months after she died, we went over for a visit and slept at her house. My son (3) was soooo upset because he couldn't find Mama Cole. He cried and cried and I tried to explain that she had moved in with Jesus, but he was having a hard time grasping it all. I lay in bed with him trying to comfort him and he was looking up. He stopped crying a smiled all of a sudden and said "well there's her hand." He reached up and patted the air, then smiled real big and went right off to sleep. I cried for hours.

Link to comment
Share on other sites
Carriefaith Enthusiast

I'm really sorry to hear about your grandfather. I will pray for you and your family.

About the gluten-free diet. You may just need more time to heal. I know I was very frustrated when I didn't see improvements after 4-5 months. I noticed some improvements after 6 months on the diet, but the most improvements were after 1 year on the diet. During that first year, I did have a lot of gluten contaminations and I was eating some dairy, which I am allergic to (but didn't know at the time). I really needed a year to get everything together. Contaminations build up and prevent you from healing. Once I got myself together, I started to feel a lot better. Also, I am just starting to notice major changes in my energy levels after 2 years on the gluten-free diet!

Link to comment
Share on other sites
Judyin Philly Enthusiast

CHELSE

SO SORRY ABOUT YOUR GRANDPA AND YOUR HEALTH.

WE'RE HERE FOR YOU --YOUR NOT WHINNING..JUST LAYING OUT YOUR FEELINGS AND THIS IS A ROUGH TIME.

HUGS

JUDY

Link to comment
Share on other sites
TinkerbellSwt Collaborator

ChelsE

I know I am sounding like everyone else. I have no profound words of wisdom either. I just find comfort in praying. I am so sorry for your grandpa. I will add him and you to my prayers.

As for your not feeling better, I can relate to that too. I am so tired of being tired. The exhaustion is just overwhelming. My depression isnt getting any better either. I am about fed up with it all (not that we can just change our minds about this life change) I want to quit. I am also putting pressure on myself b/c I think I should be feeling much better than I am. My 11 month old I am sure feels the same way. I guess we just have to keep on trudging on and wait like everyone says, it will get better.

Sorry that I just used your thread to complain about my own stuff, just wanted to let you know that you werent alone.

Link to comment
Share on other sites
penguin Community Regular

UPDATE on my grandfather...

my mom corrected me, he's 88 not 87.

Also, she forgot to tell me that he's TALKING. Not much, but talking. I had no idea. A couple weeks ago, some family was there and were leaving. His cousin said, "I'll be back in 2 days" he said, "I'll be here". His son said said, "I'll be back to see you soon" he said, "I'll be here." His daughter-in-law (who's a doom and gloom person he doesn't like) said "I'll be back later dad!" he said, "bye!"

His humor is not lost on me. :)

His wife has been telling him exactly what's going on since the beginning. She told him about the meeting with the doctors and said, "we're going to prove them wrong, aren't we" he said, "yes". He also has decent use of his right hand. He's just not consistent.

The doctors don't think he's cognitively there, though he obviously is. I think they're writing him off because he's old. He's going to stay in the rehab he's in for about another month, and then his wife is taking him home. It's a massive undertaking, but she refuses to send him off to die in a nursing home. She's a good 30 years younger than him and is in it for the long haul. My mom's moving down there and she'll go help his wife out to give her time off.

Thanks for all the prayers and encouragement :)

Link to comment
Share on other sites
Judyin Philly Enthusiast

WHAT WONDERFUL NEWS, CHELSE. :)

IT'S AMAZING WHAT THE 'HUMAN SPIRT' CAN DO.

HAVE A YOUNGER WIFE IS GOING TO BE A BLESSING SO SHE CAN HELP HIM

GLAD OUR PRAYERS HAVE HELPED.

KEEP THE FAITH

JUDY IN PHILLY

Link to comment
Share on other sites
tiredofdoctors Enthusiast

Chelsea -- that is great news. I'm glad he's in rehab. Under Medicare guidelines, in order for a patient to stay in rehab, they must participate two times per day in at least two therapies: Physical, Occupational or Speech. That is a great place for him to be. Tell your grandmother to make sure that they are being compliant in scheduling his therapies. Speech therapists can do wonders with stroke patients -- so can occupational therapists. (Of course, I think that Physical Therapists can do the MOST -- just kidding :P ) Seriously, though -- I would insist on speech therapy -- given that he is beginning to talk, they can really work wonders. They can also get him assistive devices, such as an electronic word board, if he has the type of aphasia (speech disorder) where he knows what he wants to say, but can't get the words out. Don't let them get him a walker -- Medicare will pay for one assistive device. If there is a chance that he will need a wheelchair, make sure that Medicare pays for that. The walker is MUCH cheaper! Also, find out about other things -- elevated toilet seat, etc., that Medicare will pay for. I know that you said that he will be in there for a month, but those weeks go by REALLY fast, and you need to start preparing for him to leave the day he gets in there. I like that he said "bye" to the doom and gloom girl! :lol: That shows that he REALLY knows what's going on -- maybe more than the doctors B) I'm so glad for such good news. He will continue to improve -- the brain just continues to make more and more pathways -- but it has to be challenged in order to do that . . . Hence, the emphasis on the therapies! Though I'm not much of Martha Stewart fan, "this is a good thing" :lol: . . . Love, Lynne

Link to comment
Share on other sites
aikiducky Apprentice

I'm glad you had some good news about your grandpa. I'll keep you and your family in my thoughts.

It seems to me that an awful lot of people have written here about first feeling much better and then having a downswing again after two-three months into the diet. Hopefully you'll swing back up again after a while.

Pauliina

Link to comment
Share on other sites
schuyler Apprentice

Chelsea,

I'm glad that your grandpa's doing better. The human spirit is amazing and miracles do happen.

I'm going to whine along with you about not feeling better. I've been gluten-free since January and I felt great for a few weeks, but now I feel horrible (sometimes worse than before going gluten-free). The exaustion is horrible, I really want that to go away. I'd do anything to feel better. Sometimes I feel so alone because no one in my family understands what I'm going through (I will give them credit for trying). I don't know what I'd do if I hadn't found this site because everyone on here is so helpful, supportive, and they know what I'm going through.

Anyways, you and your family will be in my thoughts and prayers.

-Danielle

Link to comment
Share on other sites
WLJOHNSON Newbie

Dear Chelsea,

I am so inspired by the story of your grandfather! He sounds so spirited and really full of life. I am hoping and praying that his recovery continues, and perhaps you can tell him someday about my grandfather, who had surgery at age 98. He survived and lived to tell about it, so I know that this could happen for your grandpa too!

About still feeling lousy after 3 months. Just stop and think about how long you consumed gluten, and the toll it probably has taken on you. This is the first time I have visited the board since January, but at age 61 I have been dealing with Celiac since age 8. Only in the past 3 years or so have I seen so much improvement, both in myself, and in the awareness of others in our communities. I have found that when I am feeling overly tired, I am usually eating something with hidden dangerous ingredients (dangerous to me, though no one else may have problems with that ingredient).

I remember trying soy cheese and having symptoms, then realizing that the cheese contained casein and whey, which I had to then learn about. I remember that Little Miss Muffet sat on her tuffet, eating her curds and whey, but what I didn't realize was that whey and casein are derived from milk, which I am allergic to. So, in addition to all the grains, I must stay away from any and all dairy products, egg whites and yeast, something which took me a long while to learn, and then only through trial and error.

Eventually you will get down what affects YOUR body in certain ways, and, most likely, you'll start feeling better again. That is the miraculous thing about our wonderful bodies--they will tell us exactly what to do, if we will only listen. So, pay close attention to what you are eating, and read labels endlessly, and be ever diligent and careful to put only allowable foods into your body, and I'm sure that soon you'll be thriving. I wish you and all others who are just joining this path of good health many blessings. Welda Lou

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    2. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling

    3. - trents replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling

    4. - trents replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    5. - Julie Riordan posted a topic in Traveling with Celiac Disease
      2

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,489
    • Most Online (within 30 mins)
      7,748

    Ronnieb8675
    Newest Member
    Ronnieb8675
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
    • trents
      There are supplements available that can help breakdown minor amounts of gluten such as you might experience with cross contamination when dining out and you order gluten free items from a menu. But they will not help when larger amounts of gluten are consumed. One such product that many on this forum attest to as having helped them in this regard is GliadinX. The inventor of GlidinX is one our forum sponsors so you should know that.
    • trents
      There is such a thing, believe it or not, called gluten withdrawal. Gluten has addictive properties similar to opiates. I know it sounds bizarre but research it. Also, are you compensating for the loss of vitamins and minerals you were getting from the FDA mandated fortified wheat flour products you were formerly consuming?
    • Julie Riordan
      Just wondering can anyone help me out.heading on holidays and don’t really know what expect.if I get glutened are there tablets that you can take
×
×
  • Create New...