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Need To Hear A Success Story!


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25 replies to this topic

#1 Nat1

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Posted 06 March 2011 - 09:58 AM

As a new member to the community, for my personal inspiration and I am sure for the insipiration of the other newbies who are struggling with this whole gluten-free thing, I'd love to hear some success stories from the old timers :D

Could you please share your stories of successful healing and how long it took to get to that point?

Thank you!
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#2 mamaw

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Posted 06 March 2011 - 02:29 PM

Hello & Welcome
I'm an old-timer! In a nutshell I had just about every health issue one can think of...I'm allergic to just about everything on this planet. I was dx'd years ago with ALS , I should have been gone a longtime ago with the ALS Dx's! I went gluten-free a few months later & I've been walking & talking ever since. Expected life span with ALS is 3-5 years. I 've been gluten-free for a way longer than that. I did gluten-free without the blessing of a mainstream medical doctor... I have one celiac gene & one gluten sensitive gene. My bloodwork showed celiac but I was gluten-free for over 6 months before I had an endo& there was no way I was going to push my luck with eating gluten for a test... Before being gluten-free I couldn't walk or talk much plus I chocked on foods, very tired & loads of pain.
Being gluten-free is my way of life , I never cheat. There is so much in gluten-free foods now days that one should not have to miss anything.....
It is a new way of life that does take time to learn & explore but it can be done . Now I will state that gluten-free will never exactly taste the same as wheat but when you know you need on this diet or lifestyle as I call it it is a win-win.
Far better than chemo, radiation, expensive drugs that harm our bodies---- I'll take a food change any day!
Welcome to a happy healthy life without wheat! Feel free to ask questions & be patient it will all fall into place.....

blessings

mamaw
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#3 IrishHeart

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Posted 06 March 2011 - 02:41 PM

Hello & Welcome
I'm an old-timer! In a nutshell I had just about every health issue one can think of...I'm allergic to just about everything on this planet. I was dx'd years ago with ALS , I should have been gone a longtime ago with the ALS Dx's! I went gluten-free a few months later & I've been walking & talking ever since. Expected life span with ALS is 3-5 years. I 've been gluten-free for a way longer than that. I did gluten-free without the blessing of a mainstream medical doctor... I have one celiac gene & one gluten sensitive gene. My bloodwork showed celiac but I was gluten-free for over 6 months before I had an endo& there was no way I was going to push my luck with eating gluten for a test... Before being gluten-free I couldn't walk or talk much plus I chocked on foods, very tired & loads of pain.
Being gluten-free is my way of life , I never cheat. There is so much in gluten-free foods now days that one should not have to miss anything.....
It is a new way of life that does take time to learn & explore but it can be done . Now I will state that gluten-free will never exactly taste the same as wheat but when you know you need on this diet or lifestyle as I call it it is a win-win.
Far better than chemo, radiation, expensive drugs that harm our bodies---- I'll take a food change any day!
Welcome to a happy healthy life without wheat! Feel free to ask questions & be patient it will all fall into place.....

blessings

mamaw


MAMAW!
I just filled up with tears at your story! You are an inspiration!! :)

NAT!!
OMG!! I was thinking about asking this very same question today because I admit, I am feeling discouraged. I have been so sick and in such debilitating muscle/joint and neuropathic pain for so long --along with GI symptoms, lost hair, weak and spacey headed, etc. etc. A bunch of allergies and feeling ill every single day. My life has been on hold for years.Even though I never give up, I am waiting for more relief. I cry every day from the pain and then, get over it and stay the course---gluten-free all the way!!(I was told to get a scooter to get around and accept my fate. I will not!)

I will say this...
In just 2 months, I am thinking clearly again and not living in the bathroom. YAAY!! :)

Hearing your words just gave me the added boost I needed. :D Thanks for sharing and thanks for this post!! Many blessings to you!!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 Judy3

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Posted 06 March 2011 - 02:50 PM

I'm not really an old timer on here just 4 months but I have had digestive issues all my life, low blood sugar, diabetes, diagnosed with IBS, Fibromyalgia, you name it and I was on the verge of it. I finally got deathly ill this past summer/fall and my doctors started to think that all these individual diagnosis' were incorrect. So they dug deeper and I was finally diagnosed with Celiac Disease in November 2010. I've been gluten free since that day and ALL of the above issues are going away. Off my Diabetes medications completely, no pain like Fibromyalgia, digestive issues are going away slowly but surely. At 53 years old, I feel better every day than I did at 6 yrs old if that can be believed. I've apparently had this in a mild form all my life and had episodes where it would get worse and then better but I've always had a stomach ache since I was 6. That's when the hypoglycemia started as well and that is back but it's manageable now (as much as that can be). I'm finding that being gluten free is only tough when I'm out in public (restaurant, friends houses, family get togethers) but my friends and family are learning what's ok and what's not and I do bring my own food to most get togethers. Not necessarily my own plate of food but something to share with everyone. I used an old family recipe for chocolate cake and swapped out the flour for gluten free flour and a little xanthan gum and it was so good that my friends asked for the recipe... :) It's a learning process and it's an attitude change but I am a success story in short order. I saw my gastro doctor in Feb and as I was leaving I heard him recording his notes from my visit and he said "excellent success on the Celiac diet, revisit in one year!!"...

So there you have it my story. I'm feeling better than I have in my life... haven't had a stomach ache (nausea) for 4 months and like I said it's the first time since I was 6 years old (I thought everyone felt that way!)

Good luck to you... it's not as hard as it seems at first. :)
  • 3
*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#5 IrishHeart

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Posted 06 March 2011 - 03:59 PM

I'm not really an old timer on here just 4 months but I have had digestive issues all my life, low blood sugar, diabetes, diagnosed with IBS, Fibromyalgia, you name it and I was on the verge of it. I finally got deathly ill this past summer/fall and my doctors started to think that all these individual diagnosis' were incorrect. So they dug deeper and I was finally diagnosed with Celiac Disease in November 2010. I've been gluten free since that day and ALL of the above issues are going away. Off my Diabetes medications completely, no pain like Fibromyalgia, digestive issues are going away slowly but surely. At 53 years old, I feel better every day than I did at 6 yrs old if that can be believed. I've apparently had this in a mild form all my life and had episodes where it would get worse and then better but I've always had a stomach ache since I was 6. That's when the hypoglycemia started as well and that is back but it's manageable now (as much as that can be). I'm finding that being gluten free is only tough when I'm out in public (restaurant, friends houses, family get togethers) but my friends and family are learning what's ok and what's not and I do bring my own food to most get togethers. Not necessarily my own plate of food but something to share with everyone. I used an old family recipe for chocolate cake and swapped out the flour for gluten free flour and a little xanthan gum and it was so good that my friends asked for the recipe... :) It's a learning process and it's an attitude change but I am a success story in short order. I saw my gastro doctor in Feb and as I was leaving I heard him recording his notes from my visit and he said "excellent success on the Celiac diet, revisit in one year!!"...

So there you have it my story. I'm feeling better than I have in my life... haven't had a stomach ache (nausea) for 4 months and like I said it's the first time since I was 6 years old (I thought everyone felt that way!)

Good luck to you... it's not as hard as it seems at first. :)



That's awesome, Judy..THANK YOU!! Even though Nat started this thread, I am feeling so much better :>)
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 Judy3

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Posted 06 March 2011 - 05:05 PM

That's awesome, Judy..THANK YOU!! Even though Nat started this thread, I am feeling so much better :>)



You are so welcome. I'm not an expert on this at all but I feel wonderful and have tons of energy that I never had before.

Good luck to you and Nat as you begin this journey. Any help I can give along the way let me know. You can friend me if you want.

*Judy
  • 1
*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#7 mamaw

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Posted 06 March 2011 - 07:12 PM

Irishheart

Remember we are given adversities to deal with in life that will make us stronger...or beat us down. I'm a fighter & so are you .....I still have moments/days when I don't do well but I push on ... It seems life is just this way anymore...I have at least four autoimmune disorders &they just keep coming but I deal with them as they come..
You too will find a good place in due time.
Have you tried cutting out nightshade veggies to see if that helps your pain? Vit D also helps......
I pray you pain decreases soon...


If I can help please ask....blessings

mamaw
  • 1

#8 Brigit

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Posted 06 March 2011 - 11:39 PM

Sorry that you are feeling overwhelmed!

I have only been gluten free for 2 weeks now. My first three days were horrible, I had incredible pain and have not slept well. We also lead a very busy social life, and I've felt silly having to ask people what they are cooking, so that I can take my own food along if necessary.

But besides all that, I've lost some weight, I feel lighter than I've ever felt, my IBS is almost non-existent and I have more energy on little sleep while being gluten free, than I did with 8 hours sleep and eating gluten. :)

I hope you have people around you to support you and encourage you! That will help a lot. My wonderful husband will often eat the same as me, when I have to pack in my own food to eat at socials and he even threw away all the biscuits and wheat items we had in the house. :) He reminds me often that its a process to get better, but that it's completely worth it!

I hope you start feeling the benefits soon! That you start to enjoy the food you may eat and get excited about eating wonderful veggies, salads, fish and other lovely food.

All the best!
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#9 Monklady123

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Posted 07 March 2011 - 05:27 AM

I'm also not really an old-timer although I've been on the diet long enough to see great things! I'm one of the lucky ones who didn't have to wait years and years, through mis-diagnoses, etc. My acute symptoms came on suddenly (although I subsequently learned that I'd had other symptoms caused by gluten for years), following a bad strep/flu thing. My doctor said that this is the theory behind a lot of auto-immune things, that they're "jump started" by another systemic infection.

Anyway, I went for three or four months with awful cramps, diarrhea, headache, etc. After my blood test (which was "fairly conclusive", whatever the heck that means) my doctor said go on the diet. I did. A week later I was a new person! Completely. omg..

And, then one day after maybe three weeks or so it suddenly occurred to me that my hip pain -- the one that would wake me up at night sometimes -- was gone. Totally gone. The headache that I often woke up with, that I thought was because of wine (although why would one ordinary glass of wine give me a headache?) -- gone. The sort-of blurriness in my eyes, which I thought was me needing a new prescription for my glasses -- gone.

I'm now cramp-free. D-free. Hip pain-free. Eye blurring-free. Headache-free. (except when I've been glutened, of course.)

So that's my story. I have never been tempted to cheat, even when I've got something yummy in front of me. I do miss it, and sometimes think "oh just one bite." But I never do because I remember how awful I felt, and how wonderful I feel now! B)
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#10 lovegrov

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Posted 07 March 2011 - 05:51 AM

More than 9 years on the diet. For years I had mouth sores, terrible gas, some diarrhea, occasional anemia, DH and various other symptoms. Then, during a bout of terrible anemia, I went downhill horribly. Liver functions out of whack, daily fevers up to 105 (that went on for weeks), everything I ate tasted like metal, inability to think or carry on a conversation, alternating chills and hot flashes, eventually unable to walk by myself. All of which led to hospitalization for 11 days and completely missing 10 weeks of work. Doctors were sure I had non-Hodgkins lymphoma. Another thought my liver was failing. It was undiagnosed celiac.

It was months before I was "normal" and back to strength again, but every single one of those problems was solved by going gluten-free.

richard
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#11 IrishHeart

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Posted 07 March 2011 - 08:22 AM

Irishheart

Remember we are given adversities to deal with in life that will make us stronger...or beat us down. I'm a fighter & so are you .....I still have moments/days when I don't do well but I push on ... It seems life is just this way anymore...I have at least four autoimmune disorders &they just keep coming but I deal with them as they come..
You too will find a good place in due time.
Have you tried cutting out nightshade veggies to see if that helps your pain? Vit D also helps......
I pray you pain decreases soon...


If I can help please ask....blessings

mamaw


Thanks, mama!! :) I AM a fighter. I have an unbelievably loving and supportive husband and WE are doing all we can to get me well. I took such a nosedive in a short time and was misdiagnosed repeatedly for 3 years--well, all of my life, actually.

YET I knew in my heart what it was and I have no doubt I will recover. I am THAT positive that I am meant to get better. :)

It's just hard some days.

I do take Vit. D--my levels are good now. I have been pro-active about my health and fighting for answers. I like to hear that others are doing well---it's really encouraging!! thanks!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 IrishHeart

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Posted 07 March 2011 - 08:26 AM

More than 9 years on the diet. For years I had mouth sores, terrible gas, some diarrhea, occasional anemia, DH and various other symptoms. Then, during a bout of terrible anemia, I went downhill horribly. Liver functions out of whack, daily fevers up to 105 (that went on for weeks), everything I ate tasted like metal, inability to think or carry on a conversation, alternating chills and hot flashes, eventually unable to walk by myself. All of which led to hospitalization for 11 days and completely missing 10 weeks of work. Doctors were sure I had non-Hodgkins lymphoma. Another thought my liver was failing. It was undiagnosed celiac.

It was months before I was "normal" and back to strength again, but every single one of those problems was solved by going gluten-free.

richard


Thank you for telling your story, Richard! I am happy to hear you are feeling so well and that all your symptoms resolved. I have so many things "wrong" too...and I see a few resolving and this gives me great hope!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 Tigercat17

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Posted 07 March 2011 - 12:31 PM

Hi Nat!

Like so many of us, I have a lot to be thankful for since the gluten free diet! I'm definitely not an old timer, but what a difference! I've been gluten free for 18 months. It really saved my life! It all started twenty years ago with sinus infections -4 x year, yearly bronchitis, depression, anxiety, insomnia, infertility and many kidney/bladder infections. I was starting to get immune to the antibiotics they were always giving me. I had to start buying the most expensive brands since the cheaper brands didn't work on me anymore. Then about five after that I was diagnosed with hasimoto thyroid disease. I had so many biopsies done on my thyroid since then. Then I was diagnosed with anemia and then vitamin D deficiency so I started taking supplements. About a year later, the doctors found out I had enlarged lymph nodes in my stomach area after I was having night sweats, feeling weak and tried. They really thought I had lymphoma so I had biopsies of the lymph nodes also - that was so painful! :blink: Since the biopsies came back benign, I had to have a CT scans done every 6 months. They wanted to keep an eye on them to see if they showing any changes. Then three years ago I found a lump on my collar bone -had to have it biopsied along with a thyroid nodule and eventually had to have my whole thyroid removed. It was cancer - a rare and an aggressive form of thyroid cancer that is resistant to radiation treatment (Hurth Cell Carcinoma). Lucky me... :huh: I was so scared. My husband was a huge help! After I had the surgery, we did have good news form the pathology report. It was Stage 1 cancer and the surrounding lymph nodes were clean. It was a huge relief! I did have go through radiation treatment afterward. I did really good through it all, but then a year after that I got so sick with bronchitis again & I completely lost my voice for two whole months! I went to eight different doctors & no one could figure out what was wrong with me. I got two different diagnoses - one of them acid reflex and sometime they would just say "we don't know what's wrong with you. " It was crazy! I was given medicine for acid reflex but the medicine didn't help me. I started to get worse -losing weight, but eating all the time, so tried that even taking a shower was the only thing I could do all day. I started not being able to put anything in my stomach. It was the scariest feeling -not being able to eat & feel so hungry at the same time. I was 96 pounds at 5'2 and I really couldn't eat! I finally went to my Oncology doctor. I really thought I had cancer again & the doctors just couldn't find it. I really thought I was dying and I think I would have if my Oncology doctor didn't order the upper endoscopy for me. She really saved my life! I thank her every time I see her! I was finally diagnosed with celiac disease - twenty years after having so many health problems.

Now, today I feel great! It took me so long to get better. When everyone told me I would feel better and a lot of my health problems would go away, I found it really hard to believe. Eighteen months ago, I would wake up every morning feeling the same - weak, sore throat, stomach was always tender, I couldn't sleep, I had so much anxiety and I was still so under weight. I thought I was going crazy sometimes. :blink: I was reacting to everything. I thought I had other food intolerances. I couldn't drink milk, but I was okay with cheeses. I did finally figured out I was still getting a small amount of gluten from a prescription, supposedly "gluten-free" products and vitamins. Gluten is sneaky & cross contamination is something that hard to figure out. Also, learning the gluten free diet is a challenge when you don't feel good. I learned the hard way that just because it says "gluten free" doesn't mean it's really gluten free. It took about eight months for my throat to heal. Finally found out that it is acid reflux. And it does come back if I get a little cross contamination. It's like my own little gluten meter. ha-ha! :D . I think at six months gluten free I was about 80% better and I was able to function pretty well. I really think it took about a good year though to feel 100%.

Today, pretty much all of my health problems went away! I've been cancer free for almost three years. My Oncology doctors aren't following me as closely since the cancer was most likely a result of the celiac disease. I'm longer being followed for lymphoma. I don't have to get abdominal CT scans anymore. The lymph nodes in my stomach area a stable and haven't change, so the doctor told me there's no reason for me to come back! I was sooo happy about that, too! I do stay away from a lot of processed foods even though they claim they are gluten free. It's just not worth it. I'd rather feel good! I realized that I'm really sensitive so it's best for me to stay way from those kinds of products even Glutino products are not something I would eat everyday and they are supposed to be the most trusted. But, I do have so much energy, I sleep like a rock, depression and anxiety are gone. I don't take any medicine except thyroid replacement hormones and vitamins. I've gained weight -I'm now 110 lbs! This is the most I ever weight in my whole life! I've actually had to cut back my eating since I was so used to eating all the time. It was like a habit that I had for the last twenty years. I always exercised & tried to take care of myself, but now it's so much easier. I feel stronger! And I haven't had one sinus infection, bronchitis or kidney infection since I've been gluten free! I hardly ever get sick. I've had one little cold since going gluten free. It lasted for five days! I couldn't believe it! It's like I have a new body...almost! ;) And even my eye prescription has improved! My doctor said it's because my body is absorbing more vitamin A!

I'm only 40 years old, but I feel like I had enough health problems to last me a lifetime. I wish I was diagnosed with this disease years ago. I think it would have saved me from so many heath problems. It's scary to know how little the medical community knows about this disease. I'm not sure if I could of got better if it wasn't for the helpful people on the forum. The people here are more knowledgeable about this disease than any doctor I have meet!


I hope this helps! Happy healing! :)

P.S. Sorry this is so long. I kind of got carried away! :)
  • 3
Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#14 ciavyn

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Posted 07 March 2011 - 12:43 PM

1.5 years gluten free. Took about 6-8 months to really feel "good." Then I wondered what on earth people were talking about when they talked about feeling like crap when they ate wheat. Then I got glutened royally. And I realized just how "good" good felt. Now I can't imagine purposely eating anything with gluten. If I want it that badly, I'll make it myself! But I feel fantastic, my bowels (I have GI symptoms) are happy cohabitators in my body, and we all get along really well. :) Hang in there. I know it's hard. I have several friends trying to transition from either diagnosis or IBS-confusion to see if it will work, and they are really struggling. Look forward folks around you who can encourage you. And don't lose hope. It's worth the wait and inconvenience. I feel fantastic, and I have lots of local restaurants who are willing to meet my needs.
  • 3
Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#15 IrishHeart

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Posted 07 March 2011 - 01:29 PM

Hi Nat!

Like so many of us, I have a lot to be thankful for since the gluten free diet! I'm definitely not an old timer, but what a difference! I've been gluten free for 18 months. It really saved my life! It all started twenty years ago with sinus infections -4 x year, yearly bronchitis, depression, anxiety, insomnia, infertility and many kidney/bladder infections. I was starting to get immune to the antibiotics they were always giving me. I had to start buying the most expensive brands since the cheaper brands didn't work on me anymore. Then about five after that I was diagnosed with hasimoto thyroid disease. I had so many biopsies done on my thyroid since then. Then I was diagnosed with anemia and then vitamin D deficiency so I started taking supplements. About a year later, the doctors found out I had enlarged lymph nodes in my stomach area after I was having night sweats, feeling weak and tried. They really thought I had lymphoma so I had biopsies of the lymph nodes also - that was so painful! :blink: Since the biopsies came back benign, I had to have a CT scans done every 6 months. They wanted to keep an eye on them to see if they showing any changes. Then three years ago I found a lump on my collar bone -had to have it biopsied along with a thyroid nodule and eventually had to have my whole thyroid removed. It was cancer - a rare and an aggressive form of thyroid cancer that is resistant to radiation treatment (Hurth Cell Carcinoma). Lucky me... :huh: I was so scared. My husband was a huge help! After I had the surgery, we did have good news form the pathology report. It was Stage 1 cancer and the surrounding lymph nodes were clean. It was a huge relief! I did have go through radiation treatment afterward. I did really good through it all, but then a year after that I got so sick with bronchitis again & I completely lost my voice for two whole months! I went to eight different doctors & no one could figure out what was wrong with me. I got two different diagnoses - one of them acid reflex and sometime they would just say "we don't know what's wrong with you. " It was crazy! I was given medicine for acid reflex but the medicine didn't help me. I started to get worse -losing weight, but eating all the time, so tried that even taking a shower was the only thing I could do all day. I started not being able to put anything in my stomach. It was the scariest feeling -not being able to eat & feel so hungry at the same time. I was 96 pounds at 5'2 and I really couldn't eat! I finally went to my Oncology doctor. I really thought I had cancer again & the doctors just couldn't find it. I really thought I was dying and I think I would have if my Oncology doctor didn't order the upper endoscopy for me. She really saved my life! I thank her every time I see her! I was finally diagnosed with celiac disease - twenty years after having so many health problems.

Now, today I feel great! It took me so long to get better. When everyone told me I would feel better and a lot of my health problems would go away, I found it really hard to believe. Eighteen months ago, I would wake up every morning feeling the same - weak, sore throat, stomach was always tender, I couldn't sleep, I had so much anxiety and I was still so under weight. I thought I was going crazy sometimes. :blink: I was reacting to everything. I thought I had other food intolerances. I couldn't drink milk, but I was okay with cheeses. I did finally figured out I was still getting a small amount of gluten from a prescription, supposedly "gluten-free" products and vitamins. Gluten is sneaky & cross contamination is something that hard to figure out. Also, learning the gluten free diet is a challenge when you don't feel good. I learned the hard way that just because it says "gluten free" doesn't mean it's really gluten free. It took about eight months for my throat to heal. Finally found out that it is acid reflux. And it does come back if I get a little cross contamination. It's like my own little gluten meter. ha-ha! :D . I think at six months gluten free I was about 80% better and I was able to function pretty well. I really think it took about a good year though to feel 100%.

Today, pretty much all of my health problems went away! I've been cancer free for almost three years. My Oncology doctors aren't following me as closely since the cancer was most likely a result of the celiac disease. I'm longer being followed for lymphoma. I don't have to get abdominal CT scans anymore. The lymph nodes in my stomach area a stable and haven't change, so the doctor told me there's no reason for me to come back! I was sooo happy about that, too! I do stay away from a lot of processed foods even though they claim they are gluten free. It's just not worth it. I'd rather feel good! I realized that I'm really sensitive so it's best for me to stay way from those kinds of products even Glutino products are not something I would eat everyday and they are supposed to be the most trusted. But, I do have so much energy, I sleep like a rock, depression and anxiety are gone. I don't take any medicine except thyroid replacement hormones and vitamins. I've gained weight -I'm now 110 lbs! This is the most I ever weight in my whole life! I've actually had to cut back my eating since I was so used to eating all the time. It was like a habit that I had for the last twenty years. I always exercised & tried to take care of myself, but now it's so much easier. I feel stronger! And I haven't had one sinus infection, bronchitis or kidney infection since I've been gluten free! I hardly ever get sick. I've had one little cold since going gluten free. It lasted for five days! I couldn't believe it! It's like I have a new body...almost! ;) And even my eye prescription has improved! My doctor said it's because my body is absorbing more vitamin A!

I'm only 40 years old, but I feel like I had enough health problems to last me a lifetime. I wish I was diagnosed with this disease years ago. I think it would have saved me from so many heath problems. It's scary to know how little the medical community knows about this disease. I'm not sure if I could of got better if it wasn't for the helpful people on the forum. The people here are more knowledgeable about this disease than any doctor I have meet!


I hope this helps! Happy healing! :)

P.S. Sorry this is so long. I kind of got carried away! :)



It helps a lot!! What an amazing story! So glad you are well and cancer-free!

(I know this is Nat's post, but I'm following it like a hunting dog LOL)

You are so inspiring!! I am weeping with joy at the stories because you all found healing!

Parts of your story are similar to mine-- the sore throat, anxiety, depression, insomnia. I have been dealing with YEARS of ill health and chronic, disabling pain and yet, I feel as if I will be all right in the end. I spent thousands of $$$ on tests, therapies, etc... for 3 years...No help from any doctors, testing, etc...they just shrugged their shoulders at me. said it was "IBS" or "GERD". Now that I know what I am dealing with, I will be okay. (I figured it out myself, researching tirelessly with my foggy brain-- and told my doctor who said OMG! you are right....) :o

The people on here ARE more knowledgeable than any medical professional. I am grateful to you all!
Thank you!!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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