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How Long Till %100


Gfresh404

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Gfresh404 Enthusiast

I apologize in advance because I know this has been asked a bunch of times. I'm also aware that everyone is different and there are many factors that one cannot even account for when trying to figure out how long it will take to fully recover.

So if you wouldn't mind, just list:

Age diagnosed

Period of time gluten-free

Estimated % of Full Recovery

For me it's:

18

2 Years 10 Months

%60


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ravenwoodglass Mentor

Age diagnosed- 46

Symptoms for 40 years prediagnosis

Gluten free almost 9 yrs

About 90% recovered some nerve damage still evident and likely permanent

Roda Rising Star

I apologize in advance because I know this has been asked a bunch of times. I'm also aware that everyone is different and there are many factors that one cannot even account for when trying to figure out how long it will take to fully recover.

So if you wouldn't mind, just list:

Age diagnosed

Period of time gluten-free

Estimated % of Full Recovery

For me it's:

18

2 Years 10 Months

%60

Age diagnosed: 36

Period of time gluten-free: 3 years

90% after 1 year

I had a set back at about 1 1/2 years after I went gluten free for about 8 months. I discovered that I was reacting to gluten free oat contaminated gluten free products. Within three months I was back to normal. Having a minor bump in the road now but think I got it under control now to.

CourtneyLee Contributor

Age diagnosed - Almost 17.

Period of time gluten-free - 10 months

Estimated % of Full Recovery - 20%

Hahaha. my symptoms keep coming and going :(

AVR1962 Collaborator

Age diagnosed- 48

Gluten free- 6 months

Estimated % of full recovery- 60%

Still dealing with balance and vertigo.

Reba32 Rookie

Age diagnosed - 42

Period of time gluten-free - almost 2 years

Estimated % of Full Recovery - 50% maybe. I know I will never be 100%. I don't think I've ever been 100% in my entire life!

Skylark Collaborator

Age figured it out (not diagnosed): 37

Full recovery at 1.5 years.

BUT my Hashimoto's is bad now so I've slid. :(


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irish daveyboy Community Regular

Age at diagnosis 57 yrs

I gave up smoking 1 yr prior to diagnosis and believe that was my trigger.

Open Original Shared Link

Gluten free for 6 yrs

Recovered 100% according to retests.

In adults (depending on damage to villi) it can take up to 2 yrs for recovery.

I gave up drinking 3 yrs ago and was diagnosed as type 2 diabetic. :o

I'm afraid to give up anything else LOL. :D

GlutenDude Newbie

This is a great idea for a post.

Age diagnosed- 41

Gluten free- 5 years

Recovery after two years: 50%

Recovery after five years: 80%

Does anybody ever feel perfect??

cahill Collaborator

Diagnosed at age 54

Undiagnosed for 40+ years,, I have had issues as long as I can remember.I believe my "trigger" was a 2 year course of antibiotics for bells palsy ( and its complications )at the age of 6 .At 17 I had my first major outbreak of what I now know was DH

I have been gluten free for 2 years and soy free for almost a year.

Digestive recovery about 80%

My GI, Neurologist and Endocrinologist feel the ataxia,liver and kidney damage I have is from being undiagnosed for so long.

The ataxia has greatly improved although there is some(probably)permanent damage. We are still watching the renal function and liver issues. My thyroid is all but destroyed by my Hashimotos.

On the up side ,I am aware of my health issues and can better deal with them . I feel better,healthier and stronger (mental and physically ) then I ever remember feeling. :)

Gfresh404 Enthusiast

This is a great idea for a post.

Age diagnosed- 41

Gluten free- 5 years

Recovery after two years: 50%

Recovery after five years: 80%

Does anybody ever feel perfect??

My guess would be yes. But it's probably quite rare and I'm sure it depends on a lot of factors. I think being diagnosed at a younger age is obviously a big deal - along with the level of damage that has been done.

Greenling Newbie

This is an interesting thread, so thanks for posting it. My info:

Age diagnosed- 41

Gluten free- 6 months (yea!)

Recovery so far: 60-70%

I cannot believe how much better I feel. :)

eatmeat4good Enthusiast

Self-Diagnosed with Celiac/DH through Celiac.com-

Age 47

Gluten Free- 1 Yr.

80 to 90% better

GuyC Newbie

Age diagnosed: 45

Period of time gluten-free: 1 year next week

Estimated % of Full Recovery: 70% - my issues were/are almost 100% nerve related. I've seen a lot of progress and am grateful for it. I hoping some of the nerve damage is not permanent.

Austin Guy Contributor

Self diagnosed May 8, 2011

MUCH, much better physically, emotionally and mentally, but I really don't know what 100% is.

Bubba's Mom Enthusiast

Diagnosed at age 54, but had various symptoms most of my life..

gluten-free 3.5 months

So far..maybe 5% better? I have a LONG way to go! :o

domesticactivist Collaborator

For my son:

Age diagnosed: 10

Time Gluten-Free: 11 months

Time on GAPS: 8 months

Percent recovered: 100%

viviendoparajesus Apprentice

In my opinion no need to apologize, I have been wanting to ask something like this. I think you asked it in a different and great way. Thanks for asking.

Undiagnosed for long time so had lot of symptoms including some digestive/GI ones

26 - Diagnosed via lab testing

gluten-free - 1 year 4 months

currently 50% some symptoms have lessened but other symptoms have appeared

strange thing for some reasons at about 7 months gluten-free i felt better than now so maybe 75% recovered wish i knew why my progress went backwards.

anyone have any theories? it is not cheating, CC, and does not seem to be an issue with another food (nightshades, soy, dairy, corn, processed foods, artificial colors/flavors, etc) :huh:

Gfresh404 : i think you should heal faster than many of us since we tend to have been diagnosed so late after there was so much damage including some irreversible harm. have you explored other food intolerances and allergies. gluten and casein (milk protein) intolerances often go together. many people recommend avoiding nightshades, soy, etc. best wishes! thanks for asking the question and putting it so well.

Bunches0729 Newbie

Age Diagnosed: 27

Gluten Free: 2 Days

Recovery: Just Began

After over a month of going through various tests/procedures, I was diagnosed two days ago. I have always had a lot of problems with my digestive system, but they have gotten progressively worse in the past few years. Since crohn's, colitis and gastric ulcers run in my family, I decided to go through with a lot of screenings to determine what was going on with me (my whole life). Right away my doctor told me I had damage to my esophagus and stomach tissue along with ulcers in my stomach (I am on medication for this now). The blood results and biopsies came back both positive for Celiac. Since I am so new, I am trying to get as much information as I can to begin changing my diet and lifestyle so I can try and recover at least a little bit (even just to feel better day to day).

SakuraKisetsu Newbie

Age diagnosed: 20

Gluten free: 8 months

Recovery: 80%

Spent most of my childhood with headaches, horrible allergies and asthma, stomach pains, and feeling sick so often that my parents thought I was a hypocondriac. I realized when I was a teenager that I might be allergic to wheat because my stomach would puff up and hurt so bad the next day, but when I mentioned it to my doctors they thought it was a mild food allergy and I didn't need to worry since I'd 'grow' out of it. So like an idiot I ate more wheat thinking I could build up an immunity to it.

Finally I started to get horrible indigestion and stomach pains, needed to have peptobismuth no further than a foot away during school, and was sick every week almost with a cold, flu, throat infection, or sinus infection, so I knew something was wrong. Finally the doctor diagnosed me after a blood test and endoscopy, but not four months later even worse symptoms came back.

Turns out that having undiagnosed celiacs can lead to gallstones even in someone who is only 20, below average weight, and who ate minimal transfats growing up. Got the gallbladder out on my 21st birthday and am feeling better, but still definitely have ups and downs.

Lori2 Contributor

Diagnosed by Enterolab testing. No self-respecting physician would diagnose an 80 year old with gluten problems.

Gluten free for 10 months.

Symptoms all cleared except neuropathy and vitiligo

Gfresh404 Enthusiast

In my opinion no need to apologize, I have been wanting to ask something like this. I think you asked it in a different and great way. Thanks for asking.

Undiagnosed for long time so had lot of symptoms including some digestive/GI ones

26 - Diagnosed via lab testing

gluten-free - 1 year 4 months

currently 50% some symptoms have lessened but other symptoms have appeared

strange thing for some reasons at about 7 months gluten-free i felt better than now so maybe 75% recovered wish i knew why my progress went backwards.

anyone have any theories? it is not cheating, CC, and does not seem to be an issue with another food (nightshades, soy, dairy, corn, processed foods, artificial colors/flavors, etc) :huh:

Gfresh404 : i think you should heal faster than many of us since we tend to have been diagnosed so late after there was so much damage including some irreversible harm. have you explored other food intolerances and allergies. gluten and casein (milk protein) intolerances often go together. many people recommend avoiding nightshades, soy, etc. best wishes! thanks for asking the question and putting it so well.

No other foods really seem to bother me. Dairy is still a little tough on my GI tract but I doubt the occasional piece of cheese is affecting me.

I think my main issue is actually more mental than anything else - and that in turn is affecting my physical life, ie. depression making me more tired. I actually just started seeing a counselor because I am truly starting to think that I have a whole other monster to deal with. And the fact that celiac and gluten are so closely linked (I mean what isn't these days?) just made me think that when I healed physically, I would heal mentally as well - doesn't seem to be the case however. Maybe I have just avoided it because for some reason I have always sort of seen depression as a character flaw, even though I know that's not true, it's taking a while to get used to. I think one is just in turn making the other one worse and my thoughts can spiral out of control rather quickly.

Gfresh404 Enthusiast

Age Diagnosed: 27

Gluten Free: 2 Days

Recovery: Just Began

After over a month of going through various tests/procedures, I was diagnosed two days ago. I have always had a lot of problems with my digestive system, but they have gotten progressively worse in the past few years. Since crohn's, colitis and gastric ulcers run in my family, I decided to go through with a lot of screenings to determine what was going on with me (my whole life). Right away my doctor told me I had damage to my esophagus and stomach tissue along with ulcers in my stomach (I am on medication for this now). The blood results and biopsies came back both positive for Celiac. Since I am so new, I am trying to get as much information as I can to begin changing my diet and lifestyle so I can try and recover at least a little bit (even just to feel better day to day).

This is a great attitude to have. If I may just offer some advice, there is quite a bit of information out there, so absorb as much information as you can, but don't necessarily swallow anything whole. Celiac and gluten sensitivity are such new disorders (in terms of awareness) that very little is actually known about them.

And just remember to go easy on yourself, you're going to make mistakes here and there, I know myself and almost every other member on this forum have. There can be quite a steep and unforgiving learning curve, but you'll eventually get it.

  • 2 weeks later...
granolagal Apprentice

I apologize in advance because I know this has been asked a bunch of times. I'm also aware that everyone is different and there are many factors that one cannot even account for when trying to figure out how long it will take to fully recover.

So if you wouldn't mind, just list:

Age diagnosed

Period of time gluten-free

Estimated % of Full Recovery

For me it's:

18

2 Years 10 Months

%60

Thanks for posting Gfresh. I'm a "newbie" so it's interesting to see how different people's recovery times are. Helps manage my expectations I guess. :P

Age diagnosed: 30

gluten-free: 3 weeks

% recovered: 0

Michelle1234 Contributor

Diagnosed at 39.

Gluten Free for 5 years.

About 6 mths or so for the initial chest pains to go away (that was my only initial symptom).

Within the 6 mths developed diarrhea as my gluten symptom. It appears 20 min. after ingesting any. I have good luck combating it with Gluten Ease and Digest Gold. However since I never purposely digest gluten I only get glutened after cross contamination.

Over the past 5 years have had good periods where I think everything is fine so 100%. However this past summer I started reacting to peanut butter and eggs (maybe at 75%). I thought I was getting cc but just recently had a full skin blow up with little pustules over my entire body (0% - way worse than initial symptoms). Turns out I am now allergic to a ton of things including diary, peanuts and eggs. I get a tight chest, have trouble breathing, my stomach hurts, my stomach is bloated and sometimes the itchy pustules come back. So right now 0%. Something is coming down hard on my immune system so I'm trying to figure out what it is. My first step beyond eliminating the newly allergic things is going to be to remove a metal bridge in my mouth just in case I'm getting reactions to the metal in it.

In summary after 5 years eating gluten free 0%! How depressing is that??? I'm also really tired all the time. Although eating gluten free got rid of my chest pain and staying away from it avoids diarrhea I don't think it ever really made me feel good like some people report because I still had alot of fatigue.

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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