Nine Months Of Recovery

[AVR1962]

I wanted to be sure of what I have been feeling, waited a week to share......I am no longer dizzy!!!! I have been gluten-free since April, made tons of mistakes with my diet but I did it. I have no doubt that my ataxia was gluten related. The strict diet has paid off!

Nine months ago today I was in ER with my heart racing, palpitations and high blood pressure. At first this was thought to be hyperthyroidism due to my high calcium and kidney stones. 7 months of tests later, after going on a gluten-free free diet in April which lowered my calcium levels, my blood pressure, and stopped all palpitations, I was diagnosed with celiac.

Yesterday I had a follow-up appt with doc who laughingly has named me the Vitamin Queen, all my bloodwork looks good, vit levels just fine and he wants me to continue supplementing the way I have been (he feels L-Glutamine is a waste of money), antibodies are good, red and white cell counts good, my diabetes test came back negative!!!!

Just one more obstacle to hurdle.....growth on my thyroid has not be reduced with meds so they are setting me up fr a biopsy. No matter the outcome, I know things will be okay.

For those who are new and wonder if they are ever going to get better, I hope this posts gives you hope. I as bad and it has taken me alot to get me where I am today. Don't give up, don't lose hope. Every day is a anew day and a another chance to make things better for ourselves.

[Bubba's Mom]

I'm SO happy for you AVR! Soo..nobody can call you a dizzy blond? LOL

Thanks for sharing your story. It gives those of us still on our journey to wellness so much hope. I'll bet the Drs wouldn't have figured all of this out? Most don't seem to think that gluten can give neurological symptoms.

I get those symptoms from soy. It took a while to figure out. I told my Dr and she said "soy can't do that". I'm not listening to her..I'm listening to my body!

[ravenwoodglass]

That's great news. So glad to hear you are feeling better and that it sounds like you found a good doctor.

[IrishHeart]

Good for you!!!! I am so happy for you!!!

It is always encouraging to hear successful healing stories.

My last blood panels were good, too--and I can understand your joy and your triumph! I'm 10 months in and coming back from the dead is like the phoenix rising.

I was just thinking myself, this will be the first happy Thanksgiving/birthday week for me in 4 years. YAAY!!

I am not the sick woman I was for 3 Thanksgivings in a row....with 2009 being the worst. I was so very ill and that's when we wondered if I was dying. I ate stuffing, gravy, pie and lived in the bathroom for a week, nauseous, sweat dripping off me, abdominal cramping so horrible I nearly passed out and hubby literally propping me up on the potty, keeping me cool with a washcloth on the back of my neck......everything from my mouth to you know where BURNING ...the pain was awful...yikes... and I was out of my head with gluten stupor, walking sideways, covered in bruises, hair falling out, unable to articulate or think, my bones, joints, and muscles BURNING so bad, I was crying almost all day long...trips to the ER, lying wide awake, burning all night--trying to get someone to see that what was happening to me was NOT normal!! ...shudder!!AcCCKKk! what an awful memory. That was my life for nearly 4 years.

....BUT this year is very different Not perfect, I am still dealing with some major pain issues, but I am not the walking dead anymore!

Finally, I AM COOKING AGAIN! I had lost that ability (which grieved me so-- as it is one of my passions) and now, I have taken it back. I saved my own life.

Gosh, I did not mean to go and on about ME ---but your enthusiastic post reporting your excellent recovery progress prompted me to do the same!! See what you started?!

Here's to us----healing and getting our lives back!

As for the growth on your thyroid, fingers crossed that it is of no consequence and perhaps it too, will resolve? (There was one on mine that seems to have vanished. It was NOT on the follow up ultrasound. Go figure?!)

I am soooo very delighted for you!!

And yes, yes, yes! Things DO get better---just as the sweet people like Ravenwoodglass told me when I first came on here--and as I try to tell "newbies", too. Everyone, just hang in there. Healing happens. I was in hell, thinking death might be easier, but I would not give up and I have climbed back out. You will, too!

Cheers--and Happy Thanksgiving!

Irish

[AVR1962]

I'm SO happy for you AVR! Soo..nobody can call you a dizzy blond? LOL

Thanks for sharing your story. It gives those of us still on our journey to wellness so much hope. I'll bet the Drs wouldn't have figured all of this out? Most don't seem to think that gluten can give neurological symptoms.

I get those symptoms from soy. It took a while to figure out. I told my Dr and she said "soy can't do that". I'm not listening to her..I'm listening to my body!

Yes, you do have to listen to your body. And no, most of my help did not come from my docs. I received most of my help from the Internet, the group here, and someone I know that has celiac. I think there is alot of medicine that has not yet been written in the books, as we seem to be finding right here on this forum.....thank goodness we live in the computer age!!

[AVR1962]

Good for you!!!! I am so happy for you!!!

It is always encouraging to hear successful healing stories.

My last blood panels were good, too--and I can understand your joy and your triumph! I'm 10 months in and coming back from the dead is like the phoenix rising.

I was just thinking myself, this will be the first happy Thanksgiving/birthday week for me in 4 years. YAAY!!

I am not the sick woman I was for 3 Thanksgivings in a row....with 2009 being the worst. I was so very ill and that's when we wondered if I was dying. I ate stuffing, gravy, pie and lived in the bathroom for a week, nauseous, sweat dripping off me, abdominal cramping so horrible I nearly passed out and hubby literally propping me up on the potty, keeping me cool with a washcloth on the back of my neck......everything from my mouth to you know where BURNING ...the pain was awful...yikes... and I was out of my head with gluten stupor, walking sideways, covered in bruises, hair falling out, unable to articulate or think, my bones, joints, and muscles BURNING so bad, I was crying almost all day long...trips to the ER, lying wide awake, burning all night--trying to get someone to see that what was happening to me was NOT normal!! ...shudder!!AcCCKKk! what an awful memory. That was my life for nearly 4 years.

....BUT this year is very different Not perfect, I am still dealing with some major pain issues, but I am not the walking dead anymore!

Finally, I AM COOKING AGAIN! I had lost that ability (which grieved me so-- as it is one of my passions) and now, I have taken it back. I saved my own life.

Gosh, I did not mean to go and on about ME ---but your enthusiastic post reporting your excellent recovery progress prompted me to do the same!! See what you started?!

Here's to us----healing and getting our lives back!

As for the growth on your thyroid, fingers crossed that it is of no consequence and perhaps it too, will resolve? (There was one on mine that seems to have vanished. It was NOT on the follow up ultrasound. Go figure?!)

I am soooo very delighted for you!!

And yes, yes, yes! Things DO get better---just as the sweet people like Ravenwoodglass told me when I first came on here--and as I try to tell "newbies", too. Everyone, just hang in there. Healing happens. I was in hell, thinking death might be easier, but I would not give up and I have climbed back out. You will, too!

Cheers--and Happy Thanksgiving!

Irish

Wonderful news on your progress as well. I know there was several of us that joined the group right about the same time and it seems we've all progressed, learned and been able to help others. I am glad you will have a special Thanksgiving this year, far from the mishaps from the past. I hear you with the symptoms. My heart aches when I read the post of the newbies. It feels like I have finally made it to the other side, and that is a really wonderful feeling!

[Bubba's Mom]

I'm so happy to hear of your improvement too IrishHeart!

This will be my first Thanksgiving gluten-free. I'm going to make a box of Stovetop for my hubby and son, and the rest of the dinner will be the same as always.

My hubby experimented a couple of weeks ago using crushed gluten-free gingersnaps as crust for pumpkin pie and we liked it better than the old gluten crust way. He says he's going to make it again.

[mushroom]

Yes, you do have to listen to your body. And no, most of my help did not come from my docs. I received most of my help from the Internet, the group here, and someone I know that has celiac. I think there is alot of medicine that has not yet been written in the books, as we seem to be finding right here on this forum.....thank goodness we live in the computer age!!

Well now, isn't that the truth. Without the internet most of us would not know where to turn - even for checking out doctors Yes, that probably explains the 'over-diagnosis' of celiac disease, because no one had ever heard of it before because those in charge of diagnosing it believed it was really rare While you can't believe everything you read on the internet, it certainly can lead you in the right direction, towards the light and health. So glad that your life has improved so much..

[pricklypear1971]

I wanted to be sure of what I have been feeling, waited a week to share......I am no longer dizzy!!!! I have been gluten-free since April, made tons of mistakes with my diet but I did it. I have no doubt that my ataxia was gluten related. The strict diet has paid off!

Nine months ago today I was in ER with my heart racing, palpitations and high blood pressure. At first this was thought to be hyperthyroidism due to my high calcium and kidney stones. 7 months of tests later, after going on a gluten-free free diet in April which lowered my calcium levels, my blood pressure, and stopped all palpitations, I was diagnosed with celiac.

Yesterday I had a follow-up appt with doc who laughingly has named me the Vitamin Queen, all my bloodwork looks good, vit levels just fine and he wants me to continue supplementing the way I have been (he feels L-Glutamine is a waste of money), antibodies are good, red and white cell counts good, my diabetes test came back negative!!!!

Just one more obstacle to hurdle.....growth on my thyroid has not be reduced with meds so they are setting me up fr a biopsy. No matter the outcome, I know things will be okay.

For those who are new and wonder if they are ever going to get better, I hope this posts gives you hope. I as bad and it has taken me alot to get me where I am today. Don't give up, don't lose hope. Every day is a anew day and a another chance to make things better for ourselves.

Great news!

[Judy3]

Hello all,

I thought I'd chime in here. I've been gluten free 1 yr this week and despite a few setbacks over the last year with being 'glutened' by medication and restaurants, I can honestly say I am feeling better than I did when I was a 6 yr old little girl and had a tummy ache every day and diarrhea more that my mother would believe. (She was a nurse and if there was no fever you went to school lol) It took 40+ yrs to figure me out but now I'm on the right road FINALLY! Celiac has been the biggest hurdle I've had to jump but being gluten free isn't that bad. I've learned to cook all over again and my non celiac friends and family still love my cooking and baking like they did before and that was my 'schtick' the cook!!! so I'm happy that I get to retain that title even after a Celiac diagnosis and a gluten free diet. In the beginning I doubted I'd ever get to bake again but you should see their eyes when they eat some of my stuff... :0) My Diabetes went in hiding when I went gluten free and it's still hiding a year later so that's a big plus too. Life is good here in Wisconsin, so I just wanted to say to the new people on this journey, there is light at the end of the tunnel!!

*Judy

[AVR1962]

Good for you Judy! It really is amazing how much our lives change once we go off gluten, how we see our past differently, and how we look at life today. It is like starting all over but we have also been givena new life, a life we haven't been able to live before, one of better health. I too have learned to make some pretty yummy gluten-free dishes and my family cannot tell the difference. Good that you diabetes was able to be controlled by your diet! I have had so many changes to the good by giving up gluten.

[navigator]

That's good news! The last two weeks I'm also feeling better than I can ever remember. It's only with this improvement that I've realised that what I previously called 'good days' were just 'not as bad days'! Here's to life starting at 54

[IrishHeart]

Wonderful news on your progress as well. I know there was several of us that joined the group right about the same time and it seems we've all progressed, learned and been able to help others. I am glad you will have a special Thanksgiving this year, far from the mishaps from the past. I hear you with the symptoms. My heart aches when I read the post of the newbies. It feels like I have finally made it to the other side, and that is a really wonderful feeling!

Thanks, hon! I dream of the day when I am "on the other side" like the ones who have healed. I am almost there! I think I can can see the finish line I am the tortoise....slow and steady. My family calls me this as they know it will take me a while to get out of the physical pain I am in...but I look at it this way, it took me my whole life to get this way, I do not expect it to reverse in a few months. (I am an optimist, but also a realist) My doctor has cautioned me about this and the "seasoned pros" on here, too---so, I do not despair and I do not get discouraged (although I AM frustrated by the pain )

....and I just keep going. One foot in front of the other. It is great that my feet GO where they are supposed to now (that ataxia is a b---h)

I really am happy to hear of your progress as I know you have had quite a run yourself. Take care! Many blessings to you!

IH

[IrishHeart]

I'm so happy to hear of your improvement too IrishHeart!

This will be my first Thanksgiving gluten-free. I'm going to make a box of Stovetop for my hubby and son, and the rest of the dinner will be the same as always.

My hubby experimented a couple of weeks ago using crushed gluten-free gingersnaps as crust for pumpkin pie and we liked it better than the old gluten crust way. He says he's going to make it again.

Thanks, BM!

Um...Why not make gluten-free stuffing for ALL of you? With the seasonings, no one will know the difference! And you won't be CCed!

Great that hubby is working with you to enjoy tasty treats! Mine makes our bread for us. He's a sweetie!

Happy Thanksgiving to you!

[IrishHeart]

Hello all,

I thought I'd chime in here. I've been gluten free 1 yr this week and despite a few setbacks over the last year with being 'glutened' by medication and restaurants, I can honestly say I am feeling better than I did when I was a 6 yr old little girl and had a tummy ache every day and diarrhea more that my mother would believe. (She was a nurse and if there was no fever you went to school lol) It took 40+ yrs to figure me out but now I'm on the right road FINALLY! Celiac has been the biggest hurdle I've had to jump but being gluten free isn't that bad. I've learned to cook all over again and my non celiac friends and family still love my cooking and baking like they did before and that was my 'schtick' the cook!!! so I'm happy that I get to retain that title even after a Celiac diagnosis and a gluten free diet. In the beginning I doubted I'd ever get to bake again but you should see their eyes when they eat some of my stuff... :0) My Diabetes went in hiding when I went gluten free and it's still hiding a year later so that's a big plus too. Life is good here in Wisconsin, so I just wanted to say to the new people on this journey, there is light at the end of the tunnel!!

*Judy

Hi Judy!

I am happy to hear you are doing so well! When we "met", you were a few months ahead of me and had already had positive results!

Your story--like so many others on here-- is inspirational.

Cheers,

IH

[IrishHeart]

That's good news! The last two weeks I'm also feeling better than I can ever remember. It's only with this improvement that I've realised that what I previously called 'good days' were just 'not as bad days'! Here's to life starting at 54

Me, too--54! (until a few weeks from now )

I do not recall the last time I felt well or moved without pain--and each month when I feel slightly better, I rejoice...

Hope your improvement continues and you feel FANTASTIC in time!

Best wishes, IH

[Bubba's Mom]

In just a few weeks (beginning of Dec.) I'll be turning 55..the double nickel as my hubby calls it.

This year has been a b**ch. Along with my spiraling health and celiac DX, I had surgery for skin cancer on my face, and surgery on my hand. Rather than get bummed about what could have been..I'm saying this year was my year to get "tuned up" for my next years! LOL

I'm looking forward to getting to the other side. I really haven't felt good for years. At least I finally got a DX and treatment plan?

My sister has Crohn's that won't go into remission. I asked her to try the gluten-free diet and she says she can't do it. Her birthday is coming up too, at the end of this month. I'm going to make her a gluten-free carrot cake to help her realize she doesn't have to give up all of the foods she loves..she just has to have them made a little differently.

I would love to see her get to a healthy state and I don't think she's going to get there without being gluten-free?

[Judy3]

Hi Judy!

I am happy to hear you are doing so well! When we "met", you were a few months ahead of me and had already had positive results!

Your story--like so many others on here-- is inspirational.

Cheers,

IH

Cheers to you too!! Hope you are doing well...

[AVR1962]

That's good news! The last two weeks I'm also feeling better than I can ever remember. It's only with this improvement that I've realised that what I previously called 'good days' were just 'not as bad days'! Here's to life starting at 54

Navigator, that is great news, I know you have been thru alot. I'll be 49 next month so I hear you about starting over in our "prime," I will call it!!

[AVR1962]

In just a few weeks (beginning of Dec.) I'll be turning 55..the double nickel as my hubby calls it.

This year has been a b**ch. Along with my spiraling health and celiac DX, I had surgery for skin cancer on my face, and surgery on my hand. Rather than get bummed about what could have been..I'm saying this year was my year to get "tuned up" for my next years! LOL

I'm looking forward to getting to the other side. I really haven't felt good for years. At least I finally got a DX and treatment plan?

My sister has Crohn's that won't go into remission. I asked her to try the gluten-free diet and she says she can't do it. Her birthday is coming up too, at the end of this month. I'm going to make her a gluten-free carrot cake to help her realize she doesn't have to give up all of the foods she loves..she just has to have them made a little differently.

I would love to see her get to a healthy state and I don't think she's going to get there without being gluten-free?

So many of us here in the thread are a little bit olderly which leads me to a question I have been pondering for awhile, as I am still asking myself "how is this possible?" at time. I had a liver cleanse that according to the doc revieled my under-lying health issues, okay get that and it makes sense. I do think I ave had this since birth as I can look back to lots of health issues and make a continual connection thru my life. However, I feel this was triggered in my case by YEARS of on-going stress that finally got me. Just wondering if any of you have any thoughts alon this line?

[ravenwoodglass]

However, I feel this was triggered in my case by YEARS of on-going stress that finally got me. Just wondering if any of you have any thoughts alon this line?

It is known that stress can be a trigger or excaberate symptoms. So yes the stress could have triggered the disease and then the cleanse brought you over the edge where the presentation became more obvious.

[IrishHeart]

Oh YES!

STRESS most definitely was the final trigger for me. In February 2008, when I started having BURNING pain, my beloved Dad had just died and the years that led up to that loss were filled with many stressors (physical & emotional)that I handled, but THAT one did me in. I was just pushed over the edge. I went downhill for nearly 3 more years until I figured it out.

I was symptomatic all of my life and had related conditions, but it only makes sense in retrospect when I look at my health history. It's too bad no one put it together: Bone pain as a child, various flus, a strange rash and fever in high school that kept me home for a month. The doctor called it Virus X because he did not know what it was. I was easily fatigued with exercise and easily bruised. I was a dancer, but my legs always hurt. I had B-12 anemia, gall bladder disease, viral pneumonia, multiple miscarriages,and sadly, I never did carry to full term. I suffered various GYN issues: endometriosis, fibroids, cysts, and an early, difficult menopause, hysterectomy at 47; Horrible migraines; shoulder surgeries, a breast cancer scare, fluctuating thyroid and glucose levels, short of breath and erratic heartbeat, "IBS", GERD, "fibromyalgia", Thinning hair, osteoarthritis, glossitis, sacroillitis, crippling joint/bone and muscle pain and neuropathy, ataxia, severe insomnia, drastic weight loss, muscle mass loss, cognitive issues, degenerative disc disease, sciatic pain,and on and on and on...

It wasn't until I started RESEARCHING the symptoms that brought my life to a screaming halt that it ALL made sense. It's sad to realize what could have been, had I known what I was dealing with, but I try to focus on the present and what I can do to have a healthier future.

This is also why I am so rabid about getting the YOUNG people in my family ---and those that come on here looking for answers ---to be tested so they can avoid the same path.

It's no surprise that so many of us are being DXed on our 40s, 50's and 60's and older because NO ONE THOUGHT to look for it as a CAUSE of the symptoms we all suffered for YEARS. If the doctor sees someone is "stressed" and feeling a bit depressed, he/she thinks "uh-oh, psychological issues" , throws some xanax and anti-depressants at the patient and moves on to the next one. Time is money. I gave you 15 minutes and now, get out!

Some doctors think it is still a disease of childhood that can be outgrown.

When my NEW, Celiac-savvy GI looked at my health history and the list of symptoms I gave him (3 pages long), he said with shock "NO ONE THOUGHT THIS DRAMATIC weight loss and ALL these symptoms were RELEVANT???" He was appalled and saddened that I went UNDXed for so long. He said "Good thing you kept pressing for an answer--You saved your own life!" He thinks it is the most under-diagnosed disease in the world.

There needs to be a radical change in the way health professionals look at a patient's symptoms. They need to stop symptom-treating and throwing drugs as everyone; they need to look at someone's whole health history and start connecting the damn dots.

The largest stressor of all for me was NO DOCTOR helped me! I saw dozens-- mainstream and alternative-- and I spent thousands. All along, it was Celiac and the gluten.

Whew--geesh, that was a bit of a rant, sorry!

[AVR1962]

As hard as it is to realize, and for all the good I thought I was doing for everyone else, I ultimately was the one that paid the price as I really do not feel I would be in this boat had I not knocked my head against a brick wall for so many years. However, the past is the past and all I can do now is press forward with a new future for myself.

IrishHeart, I understand perfectly what you are saying about docs, it is so frustrating. Throwing pills at somoene only masks the symptoms many times. I have a terrible time with my sciatic nerve.....as much as I do like my new doc he prescribed me a pain killer rather than an anti-inflammatory, hum? I really don't like to take prescript meds unless needed just because of all the side-effects and damage they can do. However, next appt he's doing a complete back work-up and said they could treat the nerve with steroids.

I'm sorry you had to suffer so long, and I hope it's all forward from here for you.

Annette

[IrishHeart]

As hard as it is to realize, and for all the good I thought I was doing for everyone else, I ultimately was the one that paid the price as I really do not feel I would be in this boat had I not knocked my head against a brick wall for so many years. However, the past is the past and all I can do now is press forward with a new future for myself.

IrishHeart, I understand perfectly what you are saying about docs, it is so frustrating. Throwing pills at somoene only masks the symptoms many times. I have a terrible time with my sciatic nerve.....as much as I do like my new doc he prescribed me a pain killer rather than an anti-inflammatory, hum? I really don't like to take prescript meds unless needed just because of all the side-effects and damage they can do. However, next appt he's doing a complete back work-up and said they could treat the nerve with steroids.

I'm sorry you had to suffer so long, and I hope it's all forward from here for you.

Annette

Thanks, A--and I wish the same for you, hon! Your sig line reads much like my symptoms.

I hear you! I was doing so much to help my MIL, my own parents, friends with needs....and I did it willingly and happily, but eventually, to the detriment of my own health.

This horrid pain all started for me with SCIATIC nerve pain and it traveled into my lumbar spine, hips, legs and pelvic floor. Then, my back and neck, down my arms. I cannot even sit or lie down without discomfort, so I URGE you to get the inflammation down ASAP, and REST it. I had to search for a special PT to help me with the pelvic pain. Another for the neck pain. I do not wish this for you! You know what several doctors told me? Learn to live with it, get a scooter, and take drugs. WTF?? no way! I am in rehab as we speak, gaining ground every day. They tell me it will take another year on top of the year I have spent doing it already. But... I moved some firewood this morning. I have not been able to do that in 3 years!

My best wishes to you. You are doing all you can to get well. You know what I call women like us who have to take charge to regain our health? Warrior Princesses!

[AVR1962]

Thanks, A--and I wish the same for you, hon! Your sig line reads much like my symptoms.

I hear you! I was doing so much to help my MIL, my own parents, friends with needs....and I did it willingly and happily, but eventually, to the detriment of my own health.

This horrid pain all started for me with SCIATIC nerve pain and it traveled into my lumbar spine, hips, legs and pelvic floor. Then, my back and neck, down my arms. I cannot even sit or lie down without discomfort, so I URGE you to get the inflammation down ASAP, and REST it. I had to search for a special PT to help me with the pelvic pain. Another for the neck pain. I do not wish this for you! You know what several doctors told me? Learn to live with it, get a scooter, and take drugs. WTF?? no way! I am in rehab as we speak, gaining ground every day. They tell me it will take another year on top of the year I have spent doing it already. But... I moved some firewood this morning. I have not been able to do that in 3 years!

My best wishes to you. You are doing all you can to get well. You know what I call women like us who have to take charge to regain our health? Warrior Princesses!

Thanks for the reply on the sciatic nerve. Have had back issues for years (hurts no matter what I do) and reoccurring sciatica for the past 2. Luckily it only runs down the back of my left leg but my whole back feels stiff and then my neck gets stiff. I do the stretches and exercises, have an inversion table that I use and have had massages. I sleep with a pillow between my knees. Bought a new bed which did help. When it flaires up it takes a couple months at least before it finally goes away. And I sit in a chair to teach approx 4 hours a day which is a killer on that leg.

I found an herbal anti-inflammatory that I started taking just this week and if that doesn't work I think I will try a chiropractor. Any tips you have learned that work would be helpful!