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madameflan

What was your recovery like after newly starting a gluten-free diet?

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Hi all! I'm new to the community, and would love to hear about what I can expect as I enter a new gluten-free life and begin recovery. I understand that everybody's experiences are very different, but I'm interested in hearing a range of experiences.

For those of you that had lived a gluten-filled life until diagnosis, what was your experience when you started a true gluten-free diet for the first time in your life? The bads and the goods?

Thanks for sharing your stories with me! I'm excited to (hopefully) start recovering and enjoy a life of energy and happiness and less pain!

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12 hours ago, madameflan said:

Hi all! I'm new to the community, and would love to hear about what I can expect as I enter a new gluten-free life and begin recovery. I understand that everybody's experiences are very different, but I'm interested in hearing a range of experiences.

For those of you that had lived a gluten-filled life until diagnosis, what was your experience when you started a true gluten-free diet for the first time in your life? The bads and the goods?

Thanks for sharing your stories with me! I'm excited to (hopefully) start recovering and enjoy a life of energy and happiness and less pain!

Welcome to the forum.  I think members might be more willing to share experiences, if you shared your own experiences with your symptoms and your path to a diagnosis.  

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Hi MF.  I found out I had celiac disease just over two years ago and once I went strictly gluten-free I noticed 'things' got better very quickly.  I had been pretty bad before, without even realising it, and had gotten used to going to the loo all the time, being constantly exhausted and fragile-feeling and having a very rumbly tummy after eating.  I only realised this when, three weeks after going gluten-free, I was pretty much back to how I had been before I hit my 40s and my celiac disease symptoms kicked in.  When I do get glutened these days (and it happens quite regularly as I still have to learn things like Pringles crisps are NOT okay and they DO contain gluten), I find that my horrible bodily reactions are much fiercer than they were before I stopped eating gluten.  I usually feel okay again 12 - 48 hours after my gluten mistake, getting better faster the less gluten I've accidentally eaten.  I find I am better off avoiding oats and quinoa but think I am okay with beer, although I still avoid drinking more than a half pint every now and then.   I find the condition much easier to manage than I thought I would and don't miss wheat-laden breads.  It's just a shame they haven't invented a gluten-free pasta that holds it's shape and isn't considerably pricier than the durum wheat variety, but I live in hope.

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I was diagnosed 1 1/2 years ago. I had some restless leg symptoms and fast heart rates all related to anemia. The anemia is what prompted the evaluation. Within 2 weeks of being gluten free, the fast heart rate and leg symptoms went away. By 4 months, I was no longer anemic.  In retrospect, there were other symptoms - worse migraines, anxiety, PMS that I didn't relate to celiac because it was totally not on my radar! (I had no GI symptoms). Those have gotten a bit better over the last year. But I added some unusual muscle aches. I have had some unusual arthritis for the last couple of years. I thought it might be related to celiac but it hasn't been getting better despite a gluten free diet, so I guess we'll see. Hope you feel better soon!

 

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I am one of the 'long term late diagnosed' cases...   At the worse point of it all I went from being a 6'1" 245ish man to a 137 pound 6' man, I was wasted away to pretty much nothing....  Virtually every aspect of my physical existence was deteriorating...  Long story short, one thing led to another and I was qualified for a temporary insurance which allowed for testing to discover what was going on and the genetic testing was done which revealed that I was wheat allergic and celiac.   It has been 'bout a year and a half post diagnosis.  I am back up to 'bout 195 pounds, my mental faculties are back as well as the weight!   I was suffering from the lose of bone density, my teeth were rotting and at one point I was told that the dentist would have to pull all of my teeth, after eating in accordance to the diagnosis, my teeth are actually healing and my bone density is returning...  My ataxia is practically none existent, and my muscle tone is returning as well, although kind of slow.  My skin rashes and break down have healed and my over all health is increasing...  On the functional end of it all, I am able to much more in the world now than I use to be able to to, I can stand and wash dishes at the sink and mow the lawn!   LOL  And believe me, to be able to do those little things in a big deal after you've been bed ridden for a period of time!   I still have a ways to go before all the healing is in effect I think, but these are just a few of the effects my post diagnosis....  (there were many more issues and changes, but did not want to write a novel on here  LOL)

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Welcome to you both :) 

I found recovery after doing the gluten challenge wasn't as dramatic as my first initial reaction to going gluten free. My stomach became very loud and gurgling and was unsettled for some time. Some things went quite quickly, brain fog for instance, other neuro things took longer. Some of them I didn't even notice as I wasn't aware at that point they were even symptoms. I was still reading things on here a year later and discovering that something I'd lived withfor 20 years was caused by gluten and had gone...

I think my experience is at the curve is generally upward, but there are pauses, plateaus and occasional dips in those first 6 months in particular. 

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On 8/9/2017 at 11:51 AM, FiveSecondWarning said:

Hi MF.  I found out I had celiac disease just over two years ago and once I went strictly gluten-free I noticed 'things' got better very quickly.  I had been pretty bad before, without even realising it, and had gotten used to going to the loo all the time, being constantly exhausted and fragile-feeling and having a very rumbly tummy after eating.  I only realised this when, three weeks after going gluten-free, I was pretty much back to how I had been before I hit my 40s and my celiac disease symptoms kicked in.  When I do get glutened these days (and it happens quite regularly as I still have to learn things like Pringles crisps are NOT okay and they DO contain gluten), I find that my horrible bodily reactions are much fiercer than they were before I stopped eating gluten.  I usually feel okay again 12 - 48 hours after my gluten mistake, getting better faster the less gluten I've accidentally eaten.  I find I am better off avoiding oats and quinoa but think I am okay with beer, although I still avoid drinking more than a half pint every now and then.   I find the condition much easier to manage than I thought I would and don't miss wheat-laden breads.  It's just a shame they haven't invented a gluten-free pasta that holds it's shape and isn't considerably pricier than the durum wheat variety, but I live in hope.

Hi FSW! Thank you so much for your response! Funnily, I also find that I have a very difficult time with quinoa, despite the fact that it's gluten-free. Primarily, it makes my stomach hurt, and (not to be gross) it seems that my body basically doesn't digest any of it at all. I wonder why that is!!  I wish you the best in your recovery!!

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On 8/9/2017 at 8:21 PM, TexasJen said:

I was diagnosed 1 1/2 years ago. I had some restless leg symptoms and fast heart rates all related to anemia. The anemia is what prompted the evaluation. Within 2 weeks of being gluten free, the fast heart rate and leg symptoms went away. By 4 months, I was no longer anemic.  In retrospect, there were other symptoms - worse migraines, anxiety, PMS that I didn't relate to celiac because it was totally not on my radar! (I had no GI symptoms). Those have gotten a bit better over the last year. But I added some unusual muscle aches. I have had some unusual arthritis for the last couple of years. I thought it might be related to celiac but it hasn't been getting better despite a gluten free diet, so I guess we'll see. Hope you feel better soon!

 

Hi TexasJen! Thank you for sharing your experience! I've been having a similar experience, actually, in noticing problems that I didn't even realize I had (that is until I cut out gluten). The migraines are terrible, and I never noticed that I scratch like all the time! No rash, but constant itching, all day every day, especially on my face and arms. I hope you can find the source of your arthritis!! Best of luck!!

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On 8/9/2017 at 9:05 PM, Fredo said:

I am one of the 'long term late diagnosed' cases...   At the worse point of it all I went from being a 6'1" 245ish man to a 137 pound 6' man, I was wasted away to pretty much nothing....  Virtually every aspect of my physical existence was deteriorating...  Long story short, one thing led to another and I was qualified for a temporary insurance which allowed for testing to discover what was going on and the genetic testing was done which revealed that I was wheat allergic and celiac.   It has been 'bout a year and a half post diagnosis.  I am back up to 'bout 195 pounds, my mental faculties are back as well as the weight!   I was suffering from the lose of bone density, my teeth were rotting and at one point I was told that the dentist would have to pull all of my teeth, after eating in accordance to the diagnosis, my teeth are actually healing and my bone density is returning...  My ataxia is practically none existent, and my muscle tone is returning as well, although kind of slow.  My skin rashes and break down have healed and my over all health is increasing...  On the functional end of it all, I am able to much more in the world now than I use to be able to to, I can stand and wash dishes at the sink and mow the lawn!   LOL  And believe me, to be able to do those little things in a big deal after you've been bed ridden for a period of time!   I still have a ways to go before all the healing is in effect I think, but these are just a few of the effects my post diagnosis....  (there were many more issues and changes, but did not want to write a novel on here  LOL)

Hi Fredo! Wow, what a journey!! I am so glad to hear that you've made such a substantial recovery! My symptoms and issues have been nowhere near as debilitating as your experience, but I can understand the frustration of watching yourself fall apart, knowing that you aren't performing at your best, but not knowing where or why or how any of this could be coming from. Thank goodness for the competent physicians/people in your life who were able to find the source of your illness before it was too late!!! I wish you the best in your recovery!!!

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On 8/10/2017 at 3:20 AM, Jmg said:

Welcome to you both :) 

I found recovery after doing the gluten challenge wasn't as dramatic as my first initial reaction to going gluten free. My stomach became very loud and gurgling and was unsettled for some time. Some things went quite quickly, brain fog for instance, other neuro things took longer. Some of them I didn't even notice as I wasn't aware at that point they were even symptoms. I was still reading things on here a year later and discovering that something I'd lived withfor 20 years was caused by gluten and had gone...

I think my experience is at the curve is generally upward, but there are pauses, plateaus and occasional dips in those first 6 months in particular. 

Hi Jmg! Thank you for your response! After being gluten-free for a couple of months now, I find that I am experiencing similar plateaus. Although in my case, I'm not sure how much of that has to do with mistakes on my part (better about sneaky gluten, not super great yet with CC and my sensitivity to it). I wish you the best in your recovery, and I hope that everything clears up and resolves itself soon!

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