The more I read about Celiac the more I think I am/have it. When I had my colonoscopy they tested, it came back neg. My thyroid DR has always had a inkling I was.
I started menopause early,have serious brain fog that has been getting worse which is very frustrating ( thought it was due to being 45),I have hypothyroid diagnosed 2yrs ago ( gained alot of weight and was freezing all the time),have restless legs,bruise easily (that has always concerned me). Mentally I am up and down, I am hoping eating gluten free alot of these issues will clear up.
The more I read about Celiac
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MissLilly,
I wonder whether several of us here (myself included) might not be on the "undiagnosed Celiac" team... I sure know that brain fog, and it's amazing. (It comes back when I get accidentally glutened - recently I didn't even have a big digestive upset, but I was so spaced out, I could hardly finish a conversation.)
As I'm sure you know, it's greatly under-diagnosed. I do hope you'll have improvement in other symptoms - many of us have, not only for big issues like thyroid, but for lots of little nagging complaints that most docs blame on "being 45" (I myself thought it was because I was 55... it's amazing what we can resign ourselves to...)
In some ways, I think it doesn't matter whether we're "truly" celiac, or "as sick from gluten as any celiac" - in the big picture. It is not a meaningless distinction - in either case I believe you're on the right track, and hope you continue seeing benefits,
Sara
I wonder whether several of us here (myself included) might not be on the "undiagnosed Celiac" team... I sure know that brain fog, and it's amazing. (It comes back when I get accidentally glutened - recently I didn't even have a big digestive upset, but I was so spaced out, I could hardly finish a conversation.)
As I'm sure you know, it's greatly under-diagnosed. I do hope you'll have improvement in other symptoms - many of us have, not only for big issues like thyroid, but for lots of little nagging complaints that most docs blame on "being 45" (I myself thought it was because I was 55... it's amazing what we can resign ourselves to...)
In some ways, I think it doesn't matter whether we're "truly" celiac, or "as sick from gluten as any celiac" - in the big picture. It is not a meaningless distinction - in either case I believe you're on the right track, and hope you continue seeing benefits,
Sara
before I was diagnosed with MC, but already was ill, after internet research I was convinced I had celiac, especially after when I discovered that the D disappeared immediately after eating glutenfree (really this is no joke it was gone and as soon as I started eating gluten again it returned). Now I know with MC this seems to work for more people, only problem is after a while the D returns (other food intolerances have taken over).
But like you say, so many things I had struggled with for years, I could linked them to Celiac or better said gluten. The brushes, brain fog (especially the brain fog), strange things going on in my bowel, there were many more things I don't exactly remember.
So when I got my diagnosis, CC, I was shocked. How on earth could I be so wrong with my gluten. I was so convinced about it. Well later on, as soon as I found this forum, it turned out I was right about the gluten. MC and gluten are also very close related.
Personally I am convinced that celiac is just one of the diseases caused by gluten, only the medical world does not have discovered this yet, even worse is still very sceptical about it. And if they come up with a theory is quit often BS.
I was tested for celiac, blood test and biopsy, both were negative. Although I have never asked what the exact results of the biopsy of the small intestine was. GI only told, nothing specific came out. Maybe next time I will ask about it.
But for me the best proof for my gluten intolerance are after almost two years diet: the bloating is gone (I always had a belly of 5 months pregnant in the evening), the mist in my head has cleared up and lately my discover that I am getting less tired. Some of us have quicker results, but I seem to be one, where it all takes longer
But like you say, so many things I had struggled with for years, I could linked them to Celiac or better said gluten. The brushes, brain fog (especially the brain fog), strange things going on in my bowel, there were many more things I don't exactly remember.
So when I got my diagnosis, CC, I was shocked. How on earth could I be so wrong with my gluten. I was so convinced about it. Well later on, as soon as I found this forum, it turned out I was right about the gluten. MC and gluten are also very close related.
Personally I am convinced that celiac is just one of the diseases caused by gluten, only the medical world does not have discovered this yet, even worse is still very sceptical about it. And if they come up with a theory is quit often BS.
I was tested for celiac, blood test and biopsy, both were negative. Although I have never asked what the exact results of the biopsy of the small intestine was. GI only told, nothing specific came out. Maybe next time I will ask about it.
But for me the best proof for my gluten intolerance are after almost two years diet: the bloating is gone (I always had a belly of 5 months pregnant in the evening), the mist in my head has cleared up and lately my discover that I am getting less tired. Some of us have quicker results, but I seem to be one, where it all takes longer
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Hi MissLilly
I can't offer any better advice than you have already recieved. Going GF helped me with brain fog more than I anticipated it would. But it did take several weeks to notice the improvement. So hang in there.
I'm wondering if you have found the "Women to Women" website. They have lots of good articles about menopause, hormonal, and adrenal and thyroid health. Unfortunately the articles always end with "buy our stuff", but I think there is a lot of good information there.
Here is a link
http://www.womentowomen.com/menopause/e ... pause.aspx
Hope you feel better soon,
Gabby
I can't offer any better advice than you have already recieved. Going GF helped me with brain fog more than I anticipated it would. But it did take several weeks to notice the improvement. So hang in there.
I'm wondering if you have found the "Women to Women" website. They have lots of good articles about menopause, hormonal, and adrenal and thyroid health. Unfortunately the articles always end with "buy our stuff", but I think there is a lot of good information there.
Here is a link
http://www.womentowomen.com/menopause/e ... pause.aspx
Hope you feel better soon,
Gabby
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MBombardier
- Rockhopper Penguin
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- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
I'm pretty sure I am an undiagnosed celiac, too. During my colonoscopy, the doctor told me (yes, I was awake--wasn't supposed to be) that my colon was unusually twisted, which he said was a marker for colitis. I don't think it would have gotten that way if I had not had issues for a lot longer than I thought.
I have the main celiac gene, and another gluten-intolerance gene, so I got a gene from each parent. And both my mother and father had/have non-Hodgkins lymphoma, which can be a consequence of untreated celiac disease. My father, who is still alive, has classic symptoms of celiac disease, but pooh-poohs any gluten sensitivity because (you guessed it) he thinks he is asymptomatic, as I was until last year.
My father also likely has autoimmune thyroiditis, like me. I found out when I visited him in July that he was diagnosed many years ago with hypothyroidism due to a small goiter.
I have the main celiac gene, and another gluten-intolerance gene, so I got a gene from each parent. And both my mother and father had/have non-Hodgkins lymphoma, which can be a consequence of untreated celiac disease. My father, who is still alive, has classic symptoms of celiac disease, but pooh-poohs any gluten sensitivity because (you guessed it) he thinks he is asymptomatic, as I was until last year.
My father also likely has autoimmune thyroiditis, like me. I found out when I visited him in July that he was diagnosed many years ago with hypothyroidism due to a small goiter.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Gabby, I like the womentowomen site, too. I know they're trying to run a business - but they share freely a lot of great info. I am expecting my doctor to be whipped up about my bone density test, and have printed out a list from their site of the tests I would like to be run, for a better understanding of my real risk.
Misslilly - you will get your life back. I was told that when I first joined, and it's a good message to continue passing on.
Misslilly - you will get your life back. I was told that when I first joined, and it's a good message to continue passing on.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Poo poo! Hahahaha!That's interesting. I hadn't heard that before - that a tortuous colon, (which is the way my GI doc described mine), was an indicator of colitis. Thanks for the info. Gee, if only my doc had known that - I might have gotten a diagnosis, instead of the opinion that there was nothing wrong with me.Marliss wrote:the doctor told me (yes, I was awake--wasn't supposed to be) that my colon was unusually twisted, which he said was a marker for colitis. I don't think it would have gotten that way if I had not had issues for a lot longer than I thought.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
misslilly wrote:Great stories,thank you. I just want my life back,I am tired of having issues.
that is once we are diagnosed with MC what we all want, our life back. The good news is, espcecially for the MC part, this is very well possible. This group has been of such great help for me, learning about the diet, entorolab testing and many other advices very so inspiring to me. Important is to know that diet, with or without medication, is not the quick fix. In my case it took about 9 months, before I noticed my bloating was over. And now after almost two years of diet, I experience a huge improvement in my fatigue.
I know in your case it's a bit more complicated, because you have also other issues like your thyroid, but than still, with playing in active role in it yourself, it's amazing what results can be achieved.
And don't let people believe you "it is the age". Of course we all do get older and as we get older we change. But a lot of those stuff are we led believe by media. Best example I find is that over 40 "it is difficult to loose weight", well I am 43 and have, I think about I was 15/16 years old, my lowest weight ever.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
You guys are so informative and open...Thank you. I have to say giving up dairy 3yrs ago alot of my bloat left. I am excited that some of my brain fog will leave.
Why is it so many people who have a biopsy come out negative? The symptoms for Gluten intolerance ( I could have written them)
Sara I did stop the probiotic ( which was lactose not dairy free). My stomach feels great along with being GF for 4 days now. I found a dairy,soy free from Solmar that I will start in a few days when it arrives.
Gabby thank you for the website..I will check it out:)
Why is it so many people who have a biopsy come out negative? The symptoms for Gluten intolerance ( I could have written them)
Sara I did stop the probiotic ( which was lactose not dairy free). My stomach feels great along with being GF for 4 days now. I found a dairy,soy free from Solmar that I will start in a few days when it arrives.
Gabby thank you for the website..I will check it out:)
Misslilly,
I'm really glad cutting out the probiotic has helped. Sometimes we try and try things, and aren't sure what's working (or if anything will work!), so it's really gratifying when we know we're on the right track.
The traditional celiac tests are endoscopy, which "counts" only very specific types of damage in specific areas (let's just say... they aren't rummaging around in the brains, or they'd definitely find the fog!) - and also blood test for antibodies... but those antibodies only show up in the blood when we've been sick for so long, there's terrible damage (which, finally, they can see on endoscopy). That means it's perfectly possible to be sick for years and get told "not celiac!" - followed by the "breadstick that breaks the camel's back" and suddenly, YES, that damage is there, and those antibodies are detectable... So after a decade of suffering (give or take), and perhaps acquiring additional autoimmune disorders, the person who was told 'not celiac' all that time suddenly gets told - hey, look, celiac disease! Celiac was considered to be rare, and to show up in childhood, but they now know that people can be diagnosed with celiac well into quite old age, and benefit from GF diet. At this point, they know they're terrible at diagnosing celiac, but not pulling up their socks and getting better at it... IMHO.
Also in my opinion, it's a lucky thing not to have that kind of damage on biopsy ('cuz then we'd be even sicker). In a crazy way, that makes MC a 'lucky' diagnosis, because then you can Google it and find your way here ;) I'd much rather have MC than "unexplained, but don't call it celiac!"
The Enterolab tests can detect those same antibodies in stool, a very long time before the cascade of negative effects results in their presence in the blood, and before the villi in the small intestine are so terribly damaged that endoscopy will result in a celiac diagnosis. That is one reason why they are so highly regarded, by those of us on this list and also by people with celiac - and quite a few other frustrating conditions that may have gluten as one of the smoking-gun triggers.
This is kind of a shortcut explanation, but I bet you get the picture. Hope this helps,
Sara
I'm really glad cutting out the probiotic has helped. Sometimes we try and try things, and aren't sure what's working (or if anything will work!), so it's really gratifying when we know we're on the right track.
The traditional celiac tests are endoscopy, which "counts" only very specific types of damage in specific areas (let's just say... they aren't rummaging around in the brains, or they'd definitely find the fog!) - and also blood test for antibodies... but those antibodies only show up in the blood when we've been sick for so long, there's terrible damage (which, finally, they can see on endoscopy). That means it's perfectly possible to be sick for years and get told "not celiac!" - followed by the "breadstick that breaks the camel's back" and suddenly, YES, that damage is there, and those antibodies are detectable... So after a decade of suffering (give or take), and perhaps acquiring additional autoimmune disorders, the person who was told 'not celiac' all that time suddenly gets told - hey, look, celiac disease! Celiac was considered to be rare, and to show up in childhood, but they now know that people can be diagnosed with celiac well into quite old age, and benefit from GF diet. At this point, they know they're terrible at diagnosing celiac, but not pulling up their socks and getting better at it... IMHO.
Also in my opinion, it's a lucky thing not to have that kind of damage on biopsy ('cuz then we'd be even sicker). In a crazy way, that makes MC a 'lucky' diagnosis, because then you can Google it and find your way here ;) I'd much rather have MC than "unexplained, but don't call it celiac!"
The Enterolab tests can detect those same antibodies in stool, a very long time before the cascade of negative effects results in their presence in the blood, and before the villi in the small intestine are so terribly damaged that endoscopy will result in a celiac diagnosis. That is one reason why they are so highly regarded, by those of us on this list and also by people with celiac - and quite a few other frustrating conditions that may have gluten as one of the smoking-gun triggers.
This is kind of a shortcut explanation, but I bet you get the picture. Hope this helps,
Sara