Success Stories?

[OBXMom]

If anyone has had any really good results from their gluten free diet, I would love to hear about them. I am normally a glass half full type, but it is getting tougher to maintain a hopeful state while we continue to try to get my little guy feeling better. Second hand accounts are fine, as are good outcomes for celiacs of any age. Just hoping all the well people haven't moved on to other boards . . .

[celiac-mommy]

If anyone has had any really good results from their gluten free diet, I would love to hear about them. I am normally a glass half full type, but it is getting tougher to maintain a hopeful state while we continue to try to get my little guy feeling better. Second hand accounts are fine, as are good outcomes for celiacs of any age. Just hoping all the well people haven't moved on to other boards . . .

I have 2 celiac children. My dd had stopped growing and had massive abdominal distention, enlarged liver and spleen and horrible stomach cramps. Within a week of going gluten-free, it was as though there was nothing wrong with her. It was amazing. It's been more than 2 years for her now and it's 2nd nature to her, she's growing and healthy and very responsible with her diet (she's 6). My son is 2, he wasn't failure to thrive, but he was consistantly growng at the 10%. Since going totally gluten-free last month he's gained almost 4# (in a month!), he's now potty trained--there's more of a focus there for everything. He's speaking in complete sentances, he's eating almost everything I put in front of him--he only ate breakfast before and practically nothing the rest of the day. He's throwing less tantrums, He really is a different kid. There will occasionally be "accidents" and I used to freak out when it happened, but I realize that sometimes it's out of your control and it doesn't happen to us very often before, but my son is 2, he sneaks food occasionally when no one is looking--at school one day his teacher was setting the table, and when she turned around to do something, he ran over to the table and took a tiny bite of EACH hamburger bun of every plate on 2 tables In our house right now, things are great. My kids are growing, healthy, happy and are completely gluten-free!

[jerseyangel]

Take heart--I have had a "nervous, touchy stomach" and anxiety since childhood. I pretty much learned to live with these things and thought this was just "how I am". I was labeled the sensitive one.

Along about the time I had my children (mid-late 20's), my symptoms became harder to live with. I was dizzy, nauseous and just never felt well most of the time. I sought the help of many doctors--some GP's, specialists--no one seemed to feel my problems were digestive in nature since I didn't have D.

I was treated for allergies, sinus infections and TMJ. Was given numerous rounds of antibiotics and when oral steriods failed to bring relief, injected long lasting steriods. I think by this time, they just didn't know what else to do with me.

As I got older--in the last 10 years, I had an endometrial ablation to lessen monthly blood loss because by that time I was severly anemic. I couldn't tolerate iron suppliments, which is just as well since they wern't much help when I was taking them. After the procedure, I seemed to feel worse instead of better.

After a case of the flu in early 2003, my symptoms went into high gear....I began experiencing tingling and numbness, persistant anemia (couldn't drive anymore by this point, as I was so dizzy), depression, severe anxiety, fatigue, trouble focusing, tooth chipping, bruising all over my forearms, weight loss, nausea, and chronic, urgent D. I quite frankly thought I was dying. I had to quit a job that I loved by this point, which I think added to my ever growing depression.

Fast forward to the next spring when I saw the gastroenterologist who listened to my story, ordered testing and finally diagnosed me. (long story short) This was June 2, 2005--I was 49 years old.

I've been gluten-free since then. It was rough in the beginning because I also have several other food intolerances that showed up after the gluten was removed from my diet. It took months to figure all of that out (with help from a very good allergist).

The good news is that although it took about 2 years to happen, I now feel good most of the time. At this point, approching the 3 year mark--almost all of my symptoms have gone away, and I have mostly good days. I no longer worry about leaving the house for fear of having an accident, and I wake up looking forward to the new day ahead. I even look different than I did 4 years ago--it's truly amazing.

Be grateful that your little one was diagnosed early on. Stay the course, watch out for other intolerances and know that you are on the right track. It's all going to be fine....keep in mind that everyone heals at a different rate and children are generally much quicker to heal that adults.

[Pattymom]

I've been gluten free for over 3 years, I feel great, no more bloating, gas, adn abdominal misery. My dd, 3 1/2 has been off since January for growth issues. She has grown an inch and gained 2 lbs, after not growing or gaining for 6 months (or more). She still is picky sometimes and has tantrums about things, but gluten or not she is 3. She is sleeping better and overall eating more. It is definetely worth it for us, despite the challenges. I am glad I got it early so she doesn't need the struggles and health issues I dealt with for years.

Hang in there,

Patty

[dandelionmom]

My little girl has been gluten-free since July and she's like a new child. In just a couple of weeks of the diet there were no more tantrums, she had normal b.m.s, she was happier than she'd ever been, there was no more "stomach flu," and she was fully potty-trained. Since diagnosis, she's grown 3 clothing sizes and has become the most engaging, easy going child. And she's so HEALTHY!

Everyone told me that after a few months, gluten-free could be almost second nature. I didn't believe them but now I have to say I agree. Sometimes it is hard, sometimes it is frustrating, but it is always so very worth it.

[Adelle]

Ok I don't have any kids yet, but I can tell you my story. When I was 15 I was a competitive swimmer, extremely active and healthy. Then when I was 16 I started feeling weak, dizzy, and just exhausted. No doctors believed me. By the time I was 21 I had seen 12 doctors and had been told by each one I was just "stressed" or depressed, or I must be pmsing. By the time I was 22 I had peripheral neropathy in my legs, symptoms of narcolepsy (I kept passing out all the time, but I couldn't afford another sleep study to prove it), I had gained about 100 lbs (since I was 15), and was only eating about 700 calories/day (and still gaining). Oh, I also shook constantly (like I had palsey or something). But it was still, "all in my head".

Thank you google!! I typed in my symptoms and the first 5 websites that popped up were about Celiac! So I figured I'd give it a shot, within 4 days I could walk (unassisted) across my apartment (not something I was able to do for months). Although the doctor I had said that a gluten-free diet was "too hard to follow and not really neccessary", I'm gluten-free for life!! It's been about a year and 8 months and I'm a new person. Ihave residual affects that will likely be forever (some joint damage/pain, I lost my sense of hunger etc), I feel like I have my LIFE back.

Keep it up, it's worth it!! And it DOES get easier!!

[OBXMom]

I have 2 celiac children. My dd had stopped growing and had massive abdominal distention, enlarged liver and spleen and horrible stomach cramps. Within a week of going gluten-free, it was as though there was nothing wrong with her. It was amazing. It's been more than 2 years for her now and it's 2nd nature to her, she's growing and healthy and very responsible with her diet (she's 6). My son is 2, he wasn't failure to thrive, but he was consistantly growng at the 10%. Since going totally gluten-free last month he's gained almost 4# (in a month!), he's now potty trained--there's more of a focus there for everything. He's speaking in complete sentances, he's eating almost everything I put in front of him--he only ate breakfast before and practically nothing the rest of the day. He's throwing less tantrums, He really is a different kid. There will occasionally be "accidents" and I used to freak out when it happened, but I realize that sometimes it's out of your control and it doesn't happen to us very often before, but my son is 2, he sneaks food occasionally when no one is looking--at school one day his teacher was setting the table, and when she turned around to do something, he ran over to the table and took a tiny bite of EACH hamburger bun of every plate on 2 tables In our house right now, things are great. My kids are growing, healthy, happy and are completely gluten-free!

Rachel, thank you for sharing how well things are going for your children. Too funny that your son took a bite from each hamburger - I guess he figured he'd better make the most of his opportunity. My son at 8 is the most cautious little person in the world, at least foodwise, having learned from experience that food can be painful. A 2 year old is whole different ball game, though - I bet he keeps you busy!

[happygirl]

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link (scroll down and see the huge list of gluten-free bloggers)

Hope that some of this inspires you!

[OBXMom]

Take heart--I have had a "nervous, touchy stomach" and anxiety since childhood. I pretty much learned to live with these things and thought this was just "how I am". I was labeled the sensitive one.

Along about the time I had my children (mid-late 20's), my symptoms became harder to live with. I was dizzy, nauseous and just never felt well most of the time. I sought the help of many doctors--some GP's, specialists--no one seemed to feel my problems were digestive in nature since I didn't have D.

I was treated for allergies, sinus infections and TMJ. Was given numerous rounds of antibiotics and when oral steriods failed to bring relief, injected long lasting steriods. I think by this time, they just didn't know what else to do with me.

As I got older--in the last 10 years, I had an endometrial ablation to lessen monthly blood loss because by that time I was severly anemic. I couldn't tolerate iron suppliments, which is just as well since they wern't much help when I was taking them. After the procedure, I seemed to feel worse instead of better.

After a case of the flu in early 2003, my symptoms went into high gear....I began experiencing tingling and numbness, persistant anemia (couldn't drive anymore by this point, as I was so dizzy), depression, severe anxiety, fatigue, trouble focusing, tooth chipping, bruising all over my forearms, weight loss, nausea, and chronic, urgent D. I quite frankly thought I was dying. I had to quit a job that I loved by this point, which I think added to my ever growing depression.

Fast forward to the next spring when I saw the gastroenterologist who listened to my story, ordered testing and finally diagnosed me. (long story short) This was June 2, 2005--I was 49 years old.

I've been gluten-free since then. It was rough in the beginning because I also have several other food intolerances that showed up after the gluten was removed from my diet. It took months to figure all of that out (with help from a very good allergist).

The good news is that although it took about 2 years to happen, I now feel good most of the time. At this point, approching the 3 year mark--almost all of my symptoms have gone away, and I have mostly good days. I no longer worry about leaving the house for fear of having an accident, and I wake up looking forward to the new day ahead. I even look different than I did 4 years ago--it's truly amazing.

Be grateful that your little one was diagnosed early on. Stay the course, watch out for other intolerances and know that you are on the right track. It's all going to be fine....keep in mind that everyone heals at a different rate and children are generally much quicker to heal that adults.

Jerseyangel, your story is amazing, touching, to hear how the diagnosis gave you your life back. Thank you for also letting me know that it took a while to get it right, because it seems like that is where we are now, trying to figure out the other food intolerances. What foods do you have to avoid?

[OBXMom]

I've been gluten free for over 3 years, I feel great, no more bloating, gas, adn abdominal misery. My dd, 3 1/2 has been off since January for growth issues. She has grown an inch and gained 2 lbs, after not growing or gaining for 6 months (or more). She still is picky sometimes and has tantrums about things, but gluten or not she is 3. She is sleeping better and overall eating more. It is definetely worth it for us, despite the challenges. I am glad I got it early so she doesn't need the struggles and health issues I dealt with for years.

Hang in there,

Patty

Thanks, Patty, we will hang in there. . . It is great that your daughter is sleeping better, it'd be worth it to be gluten free for that reason alone, wouldn't it? For years my son woke up every 2 hours, and it really took its toll. I only found out recently that that was probably a celiac side effect. I hope everything continues to go great for you both.

[OBXMom]

My little girl has been gluten-free since July and she's like a new child. In just a couple of weeks of the diet there were no more tantrums, she had normal b.m.s, she was happier than she'd ever been, there was no more "stomach flu," and she was fully potty-trained. Since diagnosis, she's grown 3 clothing sizes and has become the most engaging, easy going child. And she's so HEALTHY!

Everyone told me that after a few months, gluten-free could be almost second nature. I didn't believe them but now I have to say I agree. Sometimes it is hard, sometimes it is frustrating, but it is always so very worth it.

Thanks for sharing, Dandelionmon, THREE clothing sizes, that is really incredible. I know what you mean about the stomach flu, we used to think my little guy got it all the time, now we know better. You guys are a few months ahead of us - hope we join you in the healthy club soon.

[OBXMom]

Ok I don't have any kids yet, but I can tell you my story. When I was 15 I was a competitive swimmer, extremely active and healthy. Then when I was 16 I started feeling weak, dizzy, and just exhausted. No doctors believed me. By the time I was 21 I had seen 12 doctors and had been told by each one I was just "stressed" or depressed, or I must be pmsing. By the time I was 22 I had peripheral neropathy in my legs, symptoms of narcolepsy (I kept passing out all the time, but I couldn't afford another sleep study to prove it), I had gained about 100 lbs (since I was 15), and was only eating about 700 calories/day (and still gaining). Oh, I also shook constantly (like I had palsey or something). But it was still, "all in my head".

Thank you google!! I typed in my symptoms and the first 5 websites that popped up were about Celiac! So I figured I'd give it a shot, within 4 days I could walk (unassisted) across my apartment (not something I was able to do for months). Although the doctor I had said that a gluten-free diet was "too hard to follow and not really neccessary", I'm gluten-free for life!! It's been about a year and 8 months and I'm a new person. Ihave residual affects that will likely be forever (some joint damage/pain, I lost my sense of hunger etc), I feel like I have my LIFE back.

Keep it up, it's worth it!! And it DOES get easier!!

Wow! I can't believe you self diagnosed and had such a dramatic turnaround. I am so happy for you, and encouraged, too. You know, it is funny, I googled my son's symptoms, too, a number of times, and came up with celiac, but he had had a negative blood test when he was two so I discounted it. Then our GI doctor did another celiac test without telling me (or I would have said don't bother) and we found out. Thanks for sharing Adelle, and you are still so young yourself, I'll be hoping your residual symptoms slowly disappear.

[jerseyangel]

Jerseyangel, your story is amazing, touching, to hear how the diagnosis gave you your life back. Thank you for also letting me know that it took a while to get it right, because it seems like that is where we are now, trying to figure out the other food intolerances. What foods do you have to avoid?

I need to avoid dairy, soy, legumes, citrus, coconut, and tapioca. I was intolerant to corn, but after completely avoiding it for 2 years, I can eat it now

I'm hoping that as more time passes, I'll be able to add in even more but if this is as good as it gets, I'm satisfied.

[OBXMom]

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link (scroll down and see the huge list of gluten-free bloggers)

Hope that some of this inspires you!

Thank you so much, this is great. Now I know what I'll be doing tonight after the kids are in bed, and American Idol is over.

[Cheri A]

It's fun to read everyone's stories!

My daughter has had a long journey to being healthy, going gluten-free in October 2005 was one of the last pieces of her puzzle. I still think there is a bit more going on, but the change is incredible. When I brought Carleigh home from the hospital, I knew that there was something not quite right. Her skin was so rough, not at all a soft baby skin. For the first 9 months, our pediatrician kept telling me that she just had dry skin and suggesting different lotions to try. None of them worked and she was a very fussy, not happy baby ever. We moved and I took her in for what I thought was an ear infection because she kept tugging the ear. The new pediatrician came in, looked at her legs and asked if she had a milk allergy. That began our food allergy journey. She was allergic to everything in my signature except the wheat and rice, seasonal allergies began showing up at around 2 years old as well as asthma. Her eczema continued to get worse and worse, esp. during the spring, summer, and fall. She NEVER slept through the night and would wake up several times/night usually with that bloody, oozing eczema even though she was on antihistimines. By this time she was also complaining about her stomach daily, either having D or constipated, and vomitting nearly every day. In the fall of 2005, we saw the conventional allergist for the last time. I was *begging* her to test for more allergies and telling her that the eczema is just out of control. She didn't want to "put her through anymore" Her "solution" was to put my 6 year old on a month of steriods to see if we could clear it up. I had heard a lot about another office that people had good luck with. Their methods are a combination of conventional meds/practices and sublingual therapy. We had nothing to loose at that point. He tested her again for the big "8" allergens, some seasonal, etc. Everything came out very high, but we gained wheat and rice allergies. They tested her for celiac, but it was inconclusive. I decided to just go gluten-free instead of wheat-free only. The change in her was incredible. Within a week, she was no longer having the gi issues, was sleeping through the night, etc. The eczema is now only bothersome during the spring, summer, and fall. No more bleeding, oozing, swollen stuff. We control it with a 1% hydrocortisone cream and moisturizer. She has not been on steroids at all. We have begun to reintroduce rice and she seems to be doing okay with it now.

[jerseyangel]

Wow Cheri--that's great that Carleigh is tolerating some rice now. That should give her a lot more variety

[OBXMom]

It's fun to read everyone's stories!

My daughter has had a long journey to being healthy, going gluten-free in October 2005 was one of the last pieces of her puzzle. I still think there is a bit more going on, but the change is incredible. When I brought Carleigh home from the hospital, I knew that there was something not quite right. Her skin was so rough, not at all a soft baby skin. For the first 9 months, our pediatrician kept telling me that she just had dry skin and suggesting different lotions to try. None of them worked and she was a very fussy, not happy baby ever. We moved and I took her in for what I thought was an ear infection because she kept tugging the ear. The new pediatrician came in, looked at her legs and asked if she had a milk allergy. That began our food allergy journey. She was allergic to everything in my signature except the wheat and rice, seasonal allergies began showing up at around 2 years old as well as asthma. Her eczema continued to get worse and worse, esp. during the spring, summer, and fall. She NEVER slept through the night and would wake up several times/night usually with that bloody, oozing eczema even though she was on antihistimines. By this time she was also complaining about her stomach daily, either having D or constipated, and vomitting nearly every day. In the fall of 2005, we saw the conventional allergist for the last time. I was *begging* her to test for more allergies and telling her that the eczema is just out of control. She didn't want to "put her through anymore" Her "solution" was to put my 6 year old on a month of steriods to see if we could clear it up. I had heard a lot about another office that people had good luck with. Their methods are a combination of conventional meds/practices and sublingual therapy. We had nothing to loose at that point. He tested her again for the big "8" allergens, some seasonal, etc. Everything came out very high, but we gained wheat and rice allergies. They tested her for celiac, but it was inconclusive. I decided to just go gluten-free instead of wheat-free only. The change in her was incredible. Within a week, she was no longer having the gi issues, was sleeping through the night, etc. The eczema is now only bothersome during the spring, summer, and fall. No more bleeding, oozing, swollen stuff. We control it with a 1% hydrocortisone cream and moisturizer. She has not been on steroids at all. We have begun to reintroduce rice and she seems to be doing okay with it now.

Cheri, what is astonishing is to see how Carleigh had her skin problem from birth, and it still took so long to figure it out. I am so sorry she had such a terrible time. Now that she is so much healthier, is she happier, too? I hope so.

[Cheri A]

Thanks Patty! Yes, it's been nice to get some rice back. She is enjoying the Tinkyada pasta. I am going to pick up some rice flour sometime to try that out occasionally.

OBXMom, yes, she is a very happy, independent, very smart, and getting healthy girl!! We've come a very long way from that fussy, itchy baby we started out with. Unfortunately, I had to keep switching allergists to find one that really works for us. I suspect that her blood sugar and I need to find someone that can help me make sure that I am feeding her enough vitamins and minerals, etc.

I hope that you will continue to follow your instincts and get to that point where your babies are feeling SO much better! This is a wonderful forum. I have learned so much over the last few years, and I'm still learning from the members here. When I found this forum, we had just received the wheat allergy/possible celiac diagnosis. I cried myself to sleep for several weeks while I fretted about feeding her. I make nearly all of her food from scratch now.

[cruelshoes]

I consider myself a success story. Can I chime in?

It started for me in 1987 when I was diagnosed with abdominal cancer at age 16. I had 2 years of chemotherapy and many radiation treatments on my abdominal area. The diarrhea started with the chemo/radiation and never went away. The doctors diagnosed me with radiation enteropathy, or damaged villi due to radiation treatments. I had to do IV feedings daily through a permanent catheter in my chest for 2 years. The diarrhea did subside a bit and I went about my business. But it never went away completely. It was never less than 5 - 10 times a day. I accepted it because I was told that it was the way it would always be with me.

By the time I was 24, it was back full force - 30 times a day. I lost 10 pounds and had to go back on the tube feeding for another year. The GI doctor I went to told me to go on a low-fat diet and patted me on the head and sent me away. I modified my diet and never ate more than 20 grams of fat per day. The low-fat diet helped for a while.

Fast forward to December 2004. By this time I've got a husband, 2 kids and a mortgage, osteoporosis and anemia that won't go away. the big "D" comes back. The worst ever. 30 - 50 times a day. I started going from doctor to doctor trying to get someone to help me. Each one of them scratched their heads and wrote me a new prescription, but nothing helped.

By August of 2005, I was so malnourished I could hardly walk. All my hair was falling out. I started passing out at work and knew that I was going to die. The last time I saw my Primary care DR, I told him that my funeral was planned and he could either admit me to the hospital, or come explain to my family why he let me die. I was in the hospital the same day. The doctor on call told me it was all in my head and put me on Prozac. I spent a week in there, and they tested me for everything under the sun and put me back on the tube feeding. It was only for a month this time.

Finally got hooked up with a GI doctor who does not have his head up his own butt (only everyone elses). He does an endoscopy and announces that I have Celiac disease. I wend gluten free that day and have never looked back.

For the first time in my life, I am truly alive. Pre-celiac disease I always had to drag myself through life. I tried desperately to have the same experiences as everyone else. But I always had to lie down because I was too sick to walk anymore. Or I had to memorize where all the bathrooms in the shopping mall were because I was going to have to go again in 10 minutes. Now my head is clear, I can walk up a flight of stairs (or several) without having to stop in the middle to rest, I have a full head of hair . For me a celiac disease diagnosis was an answer to a prayer. We had both of our kids tested. My son was positive. He now has a chance to be a healthy human being and not go through what I did.

Keep your chin up. It gets better.

[Cheri A]

Wow, Colleen! You have had quite a journey!! I'm so glad that you are feeling well and that your children will not have to go through what you have gone through.

[OBXMom]

I consider myself a success story. Can I chime in?

It started for me in 1987 when I was diagnosed with abdominal cancer at age 16. I had 2 years of chemotherapy and many radiation treatments on my abdominal area. The diarrhea started with the chemo/radiation and never went away. The doctors diagnosed me with radiation enteropathy, or damaged villi due to radiation treatments. I had to do IV feedings daily through a permanent catheter in my chest for 2 years. The diarrhea did subside a bit and I went about my business. But it never went away completely. It was never less than 5 - 10 times a day. I accepted it because I was told that it was the way it would always be with me.

By the time I was 24, it was back full force - 30 times a day. I lost 10 pounds and had to go back on the tube feeding for another year. The GI doctor I went to told me to go on a low-fat diet and patted me on the head and sent me away. I modified my diet and never ate more than 20 grams of fat per day. The low-fat diet helped for a while.

Fast forward to December 2004. By this time I've got a husband, 2 kids and a mortgage, osteoporosis and anemia that won't go away. the big "D" comes back. The worst ever. 30 - 50 times a day. I started going from doctor to doctor trying to get someone to help me. Each one of them scratched their heads and wrote me a new prescription, but nothing helped.

By August of 2005, I was so malnourished I could hardly walk. All my hair was falling out. I started passing out at work and knew that I was going to die. The last time I saw my Primary care DR, I told him that my funeral was planned and he could either admit me to the hospital, or come explain to my family why he let me die. I was in the hospital the same day. The doctor on call told me it was all in my head and put me on Prozac. I spent a week in there, and they tested me for everything under the sun and put me back on the tube feeding. It was only for a month this time.

Finally got hooked up with a GI doctor who does not have his head up his own butt (only everyone elses). He does an endoscopy and announces that I have Celiac disease. I wend gluten free that day and have never looked back.

For the first time in my life, I am truly alive. Pre-celiac disease I always had to drag myself through life. I tried desperately to have the same experiences as everyone else. But I always had to lie down because I was too sick to walk anymore. Or I had to memorize where all the bathrooms in the shopping mall were because I was going to have to go again in 10 minutes. Now my head is clear, I can walk up a flight of stairs (or several) without having to stop in the middle to rest, I have a full head of hair . For me a celiac disease diagnosis was an answer to a prayer. We had both of our kids tested. My son was positive. He now has a chance to be a healthy human being and not go through what I did.

Keep your chin up. It gets better.

Thank you for sharing your incredibly journey - I have been thinking about everything you said but have not had a chance to respond due to PC issues before now. I have thought so many times about your story, and thought, I really wish I was a documentary film maker to tell this and other incredible stories. (And I promise I have never had that wish before.) I also hear you when you say that you are focusing on the good from your and your son's diagnosis, and I plan to do this as well. My son has had 2 good days in a row, and I will count my blessings, and be so happy that he will not need to get to the state you did before diagnosis. Wishing health to you and your family-

Jane