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In what ways did you feel better after going gluten-free?

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Newly diagnosed celiac :)

I was diagnosed this month at 29. The diagnosis was quite a surprise since I was always told celiacs were scrawny and short and had constant diarrhoea (and indeed the only three celiacs I have met are quite underweight). I am very tall and a bit overweight (and have pretty much always been) and have had some GI issues but more often constipation and indigestion, which I always thought was "normal". I also tended to eat more gluten when I was eating more sweets so I blamed feeling unwell on the high fat/high sugar foods. In January I went to see my doctor because I had lost my period for about a year (I thought it was stress for the first few months since I am finishing my PhD and there's a pandemic), it turned out I had hypothyroidism and several deficiencies (iron, calcium, vit D and B12, folate). Since I insisted I had no symptoms, he said it was a long shot but worth testing for. Now that I've looked into it more I realise I actually have a lot of symptoms, like joint pain, problems with balance, and fatigue, but I always just thought that was me. My mother also recently told me (after I told her my dr thought I had celiac's) that as a toddler I did in fact have constant diarrhoea, was underweight and had a huge bloated belly. Doctors suspected celiac's but were unable to confirm it back then (apparently I had a biopsy but it was inconclusive? I don't remember any of this). I am not sure at what point in my childhood I started eating gluten again, but I can't help but wonder how it has affected me to have been eating gluten for as long as I can remember if I already had celiac's as a baby...

I am not feeling too bummed about the diagnosis because I am hopeful that a lot of things will get better after I've been gluten free for a while, e.g. my family have always said I am lazy but I always just felt very tired, and |I have ADHD which now I wonder if it might be brain fog (maybe? 🤞). I was wondering what kind of changes people saw when they went gluten free? How long did it take you to feel better? Is there anything I can do to speed up recovery?

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11 hours ago, acurry said:

Newly diagnosed celiac :)

I was diagnosed this month at 29. The diagnosis was quite a surprise since I was always told celiacs were scrawny and short and had constant diarrhoea (and indeed the only three celiacs I have met are quite underweight). I am very tall and a bit overweight (and have pretty much always been) and have had some GI issues but more often constipation and indigestion, which I always thought was "normal". I also tended to eat more gluten when I was eating more sweets so I blamed feeling unwell on the high fat/high sugar foods. In January I went to see my doctor because I had lost my period for about a year (I thought it was stress for the first few months since I am finishing my PhD and there's a pandemic), it turned out I had hypothyroidism and several deficiencies (iron, calcium, vit D and B12, folate). Since I insisted I had no symptoms, he said it was a long shot but worth testing for. Now that I've looked into it more I realise I actually have a lot of symptoms, like joint pain, problems with balance, and fatigue, but I always just thought that was me. My mother also recently told me (after I told her my dr thought I had celiac's) that as a toddler I did in fact have constant diarrhoea, was underweight and had a huge bloated belly. Doctors suspected celiac's but were unable to confirm it back then (apparently I had a biopsy but it was inconclusive? I don't remember any of this). I am not sure at what point in my childhood I started eating gluten again, but I can't help but wonder how it has affected me to have been eating gluten for as long as I can remember if I already had celiac's as a baby...

I am not feeling too bummed about the diagnosis because I am hopeful that a lot of things will get better after I've been gluten free for a while, e.g. my family have always said I am lazy but I always just felt very tired, and |I have ADHD which now I wonder if it might be brain fog (maybe? 🤞). I was wondering what kind of changes people saw when they went gluten free? How long did it take you to feel better? Is there anything I can do to speed up recovery?

i was diagnoses this year, but was gluten-free for a few years before in order to try and heal myself even without a doctor suspecting celiac. I was always told i had IBS. I am normal weight to 20 extra pounds- not obese, not skinny. I take zero meds for anything, so it seemed like i wss also ‘just tired’, but i never felt right.

I quit gluten to try and stop my daily diarrhea. It did stop, within a few days. It was like a miracle!! I thought that was the extent of my gluten healing, but then other things started improving. They thought i had the beginning of rheumatoid arthritis, and i could barely use my hands and feet every morning. After a few weeks, much to my surprise, that began to improve, and eventually completely disappeared. (I actually FORGOT that i had that terrible problem until my gluten challenge, when it came right back!) My joint pain and popping, which i thought was middle age, improved and went away. My skin improved. An acne like rash, which the dermatologist had failed to recognize as Dermatitis Herpetiformis completely went away (also returned during challenge). Any anxiety or depression, which had long alternated in me, disappeared. My need for naps and general ‘“lazy” feeling (i’m not lazy at all, but sometimes felt like being lazy) went away. Brain fog, which i also did not attribute to gluten cleared up. All these symptoms were present for many, many years, all completely gone for two years while i was gluten-free, all came back during my 5 week challenge. I am now a week into trying to heal again, and my fingers really hurt trying to type this... 
I find it interesting that you’ve missed your period for a year at 29.  I didn’t put the clues together and go gluten free until about age 45. I was fully finished with menopause by that time. I got pregnant/ delivered my third son when i was 35/36, and it was like my body decided it was DONE after that. VERY early, complete menopause in early forties for someone who had always been super fertile was very strange! All of my friends of a same age still have periods. Mine has been gone for years. Now think celiac had something to do with it.  Honestly, for me, it was a blessing. I got to have my three sons, then my husband and i never had to worry about family planning or a cycle again, but if you want children, stay off the gluten and pray your cycle straightens itself out as you heal. 

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3 hours ago, JenniK said:

i was diagnoses this year, but was gluten-free for a few years before in order to try and heal myself even without a doctor suspecting celiac. I was always told i had IBS. I am normal weight to 20 extra pounds- not obese, not skinny. I take zero meds for anything, so it seemed like i wss also ‘just tired’, but i never felt right.

I quit gluten to try and stop my daily diarrhea. It did stop, within a few days. It was like a miracle!! I thought that was the extent of my gluten healing, but then other things started improving. They thought i had the beginning of rheumatoid arthritis, and i could barely use my hands and feet every morning. After a few weeks, much to my surprise, that began to improve, and eventually completely disappeared. (I actually FORGOT that i had that terrible problem until my gluten challenge, when it came right back!) My joint pain and popping, which i thought was middle age, improved and went away. My skin improved. An acne like rash, which the dermatologist had failed to recognize as Dermatitis Herpetiformis completely went away (also returned during challenge). Any anxiety or depression, which had long alternated in me, disappeared. My need for naps and general ‘“lazy” feeling (i’m not lazy at all, but sometimes felt like being lazy) went away. Brain fog, which i also did not attribute to gluten cleared up. All these symptoms were present for many, many years, all completely gone for two years while i was gluten-free, all came back during my 5 week challenge. I am now a week into trying to heal again, and my fingers really hurt trying to type this... 
I find it interesting that you’ve missed your period for a year at 29.  I didn’t put the clues together and go gluten free until about age 45. I was fully finished with menopause by that time. I got pregnant/ delivered my third son when i was 35/36, and it was like my body decided it was DONE after that. VERY early, complete menopause in early forties for someone who had always been super fertile was very strange! All of my friends of a same age still have periods. Mine has been gone for years. Now think celiac had something to do with it.  Honestly, for me, it was a blessing. I got to have my three sons, then my husband and i never had to worry about family planning or a cycle again, but if you want children, stay off the gluten and pray your cycle straightens itself out as you heal. 

Thanks for your reply! I'm happy to hear so many issues cleared up. It's funny how many things we attribute to something else... I stopped eating gluten after my first blood test since my doctor said it could be months before I got a biopsy (I'm in the UK) and that given my deficiencies he felt it would be irresponsible to tell me to keep eating gluten even though it was the official guidance. I was off-gluten for 2-3 weeks and then I had to start it again ahead of my second blood test... oof!! I suddenly felt like I had the flu (minus the fever). I couldn't believe I'd been dealing with that my entire life and not realised... 

I do hope going off gluten can help me heal and I won't have fertility problems... 🤞 My mother also had her menopause pretty early after having three children (though she refuses to get tested on the basis that she doesn't each much bread anyway 🙄).

 

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I had most of the classic symptoms, including chronic diarrhea, and being in my 20's this was the worst thing I could imagine. I worked in downtown San Francisco and had to take a Muni street car to work, which became an underground subway once it hit downtown. I always dreaded the ride, and knew the location of every bathroom around every stop on the way. Once it went underground there was no getting off, and every once in a while a street car would break down in the tunnel and cause a random half hour to one hour delay. This was the worst, and in my case I also had symptoms of vertigo and panic attacks. Luckily I managed to avoid any incidents, but there was a lot of serious mental stress associated with what should have been very simple thing--taking public transportation.

Having the chronic diarrhea disappear within weeks of going gluten-free was like a miracle. Most of my other issues also went away shortly afterwards as well, and at the time it seemed like I had become a new person. I would say that the mental issues took longer to deal with, but after a few years those also subsided.

BTW, to this day I have a mental map of where you can find bathrooms all over San Francisco! It has come in handy from time to time whenever I visit the city, but I doubt those without celiac disease ever have to develop such a strange "skill set." 😉

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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On 4/8/2021 at 8:44 PM, acurry said:

Newly diagnosed celiac :)

I was diagnosed this month at 29. The diagnosis was quite a surprise since I was always told celiacs were scrawny and short and had constant diarrhoea (and indeed the only three celiacs I have met are quite underweight). I am very tall and a bit overweight (and have pretty much always been) and have had some GI issues but more often constipation and indigestion, which I always thought was "normal". I also tended to eat more gluten when I was eating more sweets so I blamed feeling unwell on the high fat/high sugar foods. In January I went to see my doctor because I had lost my period for about a year (I thought it was stress for the first few months since I am finishing my PhD and there's a pandemic), it turned out I had hypothyroidism and several deficiencies (iron, calcium, vit D and B12, folate). Since I insisted I had no symptoms, he said it was a long shot but worth testing for. Now that I've looked into it more I realise I actually have a lot of symptoms, like joint pain, problems with balance, and fatigue, but I always just thought that was me. My mother also recently told me (after I told her my dr thought I had celiac's) that as a toddler I did in fact have constant diarrhoea, was underweight and had a huge bloated belly. Doctors suspected celiac's but were unable to confirm it back then (apparently I had a biopsy but it was inconclusive? I don't remember any of this). I am not sure at what point in my childhood I started eating gluten again, but I can't help but wonder how it has affected me to have been eating gluten for as long as I can remember if I already had celiac's as a baby...

I am not feeling too bummed about the diagnosis because I am hopeful that a lot of things will get better after I've been gluten free for a while, e.g. my family have always said I am lazy but I always just felt very tired, and |I have ADHD which now I wonder if it might be brain fog (maybe? 🤞). I was wondering what kind of changes people saw when they went gluten free? How long did it take you to feel better? Is there anything I can do to speed up recovery?

Hi! I also don't fit the typical body type for celiac disease. I was always at 100% on the growth charts. I got diagnosed at 36. Looking back, I suspect that I had traces of it in childhood. But, there's no way for me to really know.

I developed a dairy intolerance about 14 yrs ago. Then about 2 yrs ago I developed upper right quadrant abdominal pain that we could not figure out.

My doctor refered me to a GI specialist group. While I was there, I just mentioned my dairy intolerance and the fact that there are several raw vegetables I can't eat without souring my stomach. That's when she mentioned testing for celiac.

I think that I was headed toward a health crisis, but celiac was discovered before I totally got to that point.

So, for me the thing has been figuring out what symptoms have disappeared. Bloating, very foul smells in the bathroom, stomach pain, the rash on my hands etc.

My symptoms started to improve right away within the first couple of months. But it definitely takes time! I think that currently the only way to speed up the recovery process is to avoid eating gluten. Also, make sure that your toothpaste, soaps, and cosmetics are gluten free.

I hope this helps!

 

 

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Lived a stressful life for many years. Mostly my own fault. I believe my celiac was triggered by chronic stress.

Began with neuropathy: Tingling, zip zaps all over my body, even in my eyeballs. Severe burning pain in my feet. Sometimes so severe I couldn't stand up. My sensory nerves got so hypersensitive I could feel every seam in my clothes burning on my skin. First blood test. Severe vitamin D deficiency. All other tests were normal. D-vitamin supplements didn't help with the neuropathy.  
Then constipation, acid reflux and chronic burping started. 
After a few months, the constipation turned into diarrhea. Not like a stomach bug diarrhea. More like greyish, foul smelling porridge, 3-4 times a day in huge amounts. I could empty my bowels in 2 seconds. 
Tiredness, bloated everyday. Sometimes the bloating was so severe I couldn't button up my jacket. I looked 8 months pregnant. Gas, of course, from both ends.
Headaches, muscle aches and vertigo came later. The vertigo occurred when I moved my head. The room didn't spinn around, but I lost my balance like a drunk person. 

I was very ill and it took several years before the doctors found out I had Celiac disease. By this point I had been to more than 6 doctors with a total of more than 15 appointments. Was tested for MS, GERD, parasites, Crohn's, stomach ulcer, bowel cancer, heliobacter pylori, did a spine X-ray + various other things. Not a single doctor thought about Celiac disease. I had to find it out myself by taking a self-test kit. Got my proper diagnosis 2 years ago and I suspect I was ill 5-6 years prior to this. Partial to subtotal villous atrophy. 

Because I was so ill, it took many months before most symptoms had subsided. 

If the doctor mention IBS, run. 

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