Well...this is discouraging

[mewnicorns]

I just read that only 8% of celiacs recover normal intestinal function after 16 months, and only 2/3 after 5 YEARS (despite reportedly feeling better relatively quickly). That leaves 1/3 of celiacs who never fully recover. This includes those who are maintaining a strict gluten-free diet. Those who do not fully recover are more likely to be those who were diagnosed as adults (me), and who had serious damage (also probably me, but I'll find out for sure tomorrow).

Those who do not recover are at a much higher risk for going on to develop serious and even fatal illnesses.

So we go through this onerous process of hypervigilence around food...only to be partially healed and possibly die of lymphoma or get hit with another debilitating AI disease? 

Tell me things aren't as bleak as they seem.

Edit: Forgot to mention...even the ones who never recover have no clue. They typically feel fine and their blood tests come back normal.

[cyclinglady]

12 hours ago, mewnicorns said:

I just read that only 8% of celiacs recover normal intestinal function after 16 months, and only 2/3 after 5 YEARS (despite reportedly feeling better relatively quickly). That leaves 1/3 of celiacs who never fully recover. This includes those who are maintaining a strict gluten-free diet. Those who do not fully recover are more likely to be those who were diagnosed as adults (me), and who had serious damage (also probably me, but I'll find out for sure tomorrow).

Those who do not recover are at a much higher risk for going on to develop serious and even fatal illnesses.

So we go through this onerous process of hypervigilence around food...only to be partially healed and possibly die of lymphoma or get hit with another debilitating AI disease? 

Tell me things aren't as bleak as they seem.

Edit: Forgot to mention...even the ones who never recover have no clue. They typically feel fine and their blood tests come back normal.

The reality is there is not much research done on celiac disease especially on patients  after their diagnosis.  Be careful reading studies that are clinical in nature or very small.  

I can not tell you how many times people who have been diagnosed with non-responsive celiac disease have made a minor mistake in their diets.  The problem is unless researchers lock up celiacs for months, they really do not know what they are ingesting.  My own PCP  has two other celiac patients.  They simply refuse to adhere to the gluten-free diet.  Shocking but true.  Others celiacs, like my friend’s sister, were told that they would outgrow their gluten intolerance.  But we all know now that that can never happen, but it did in the 1960s.  Has anyone researched these people or me?  No.  There is not enough funding.  

Sixty Minutes (CBS News) recently featured a story on COPD (formerly called emphysema).  It is in the top 3 (if I recall, of killers), yet they are 155 on the list for health research  funding.  (I guess we do not sympathize with former smokers or miners).  Celiac disease is not glamorous.  So, research funding is low.  I expect it will increase eventually because we know that less than 20% of celiac are diagnosed.  Plus, since we know celiac disease is genetic researchers hope that by studying it, they may get a handle on other autoimmune disorders.  

(Okay, I made this edit after a morning cup of coffee and I had better stop!  ?)

I can tell you that my thyroid nodules are gone and my thyroid is no longer enlarged since I have gone gluten free.  It is not all doom and gloom.  Most members heal and go on with their lives.  They have no time for this forum and they have lives to live.  

So there is not enough funding or research being done on celiac disease aftercare, but then do we really need it?  Avoiding gluten is the cure.  Aren’t we lucky?  I wish I could say the same to my little niece who has Crohn’s.  ?

 

[Jmg]

5 hours ago, mewnicorns said:

Tell me things aren't as bleak as they seem.

Regardless of what you've read, things definitely aren't as bleak as they seem. As per your previous thread, you're currently in the shock period and as the process goes on it will get, and look, a lot better. At the moment, at least if you're anything like I was,  you could find out that celiac patients qualify for a million dollar beach house in Costa Rica and you'll just start worrying about hurricane season and the cost of fitting a new roof

Having said that, where did you read these stats? They don't accord with the research I've seen. On a general point, be careful where your web searches take you. This community is notable for having a core of members who adhere to peer reviewed hard science. There are a LOT of sites out there which are twisting and distorting the picture, typically in order to sell their book/supplement etc.  These and similar conditions are scary when you're just learning about them and some folks out there exploit that fear and uncertainty. Try to keep to the reputable university sites or pubmed for your info wherever possible!

But even if they're accurate, it's as much how you look at them. Name another serious medical condition where TWO THIRDS of patients experience FULL RECOVERY after just 5 years of making a simple change to their diet?

 

 

 

[mewnicorns]

7 hours ago, Jmg said:

Regardless of what you've read, things definitely aren't as bleak as they seem. As per your previous thread, you're currently in the shock period and as the process goes on it will get, and look, a lot better. At the moment, at least if you're anything like I was,  you could find out that celiac patients qualify for a million dollar beach house in Costa Rica and you'll just start worrying about hurricane season and the cost of fitting a new roof

Having said that, where did you read these stats? They don't accord with the research I've seen. On a general point, be careful where your web searches take you. This community is notable for having a core of members who adhere to peer reviewed hard science. There are a LOT of sites out there which are twisting and distorting the picture, typically in order to sell their book/supplement etc.  These and similar conditions are scary when you're just learning about them and some folks out there exploit that fear and uncertainty. Try to keep to the reputable university sites or pubmed for your info wherever possible!

But even if they're accurate, it's as much how you look at them. Name another serious medical condition where TWO THIRDS of patients experience FULL RECOVERY after just 5 years of making a simple change to their diet?

 

 

 

You are so right. I suffer from a lot of anxiety and tend to always jump to the worst case scenario, especially when it comes to matters of health. Good thing I have a therapy appointment this Friday cuz I need it. I am trying to remind myself that 2/3 is still a majority, and it's good that complete healing is even possible because it isn't in a lot of other AI diseases.

It's hard for me to find the trail of links I followed since I'm on a different computer now. I think I started with an NPR article about people who get diagnosed when they're older. I was reading it because I wasn't sure if I have had these disease my whole life or if something triggered it. In that article, there was a sentence that started like "Karen, whose father died of complications from celiac disease..." and I was like WHAT? He DIED of complications from celiac? WTF does that mean? How old was he? Is this normal?! Then went down a rabbit hole and ended up on the Schar website and VeryWell.com. At that point I decided I just needed to step away from the laptop because I was searching for encouraging, consoling information and finding the exact opposite. It was scaring me so much I had to take an Ativan, which I haven't done in years :\

[mewnicorns]

10 hours ago, cyclinglady said:

The reality is there is not much research done on celiac disease especially on patients  after their diagnosis.  Be careful reading studies that are clinical in nature or very small.  

I can not tell you how many times people who have been diagnosed with non-responsive celiac disease have made a minor mistake in their diets.  The problem is unless researchers lock up celiacs for months, they really do not know what they are ingesting.  My own PCP  has two other celiac patients.  They simply refuse to adhere to the gluten-free diet.  Shocking but true.  Others celiacs, like my friend’s sister, were told that they would outgrow their gluten intolerance.  But we all know now that that can never happen, but it did in the 1960s.  Has anyone researched these people or me?  No.  There is not enough funding.  

Sixty Minutes (CBS News) recently featured a story on COPD (formerly called emphysema).  It is in the top 3 (if I recall, of killers), yet they are 155 on the list for health research  funding.  (I guess we do not sympathize with former smokers or miners).  Celiac disease is not glamorous.  So, research funding is low.  I expect it will increase eventually because we know that less than 20% of celiac are diagnosed.  Plus, since we know celiac disease is genetic researchers hope that by studying it, they may get a handle on other autoimmune disorders.  

(Okay, I made this edit after a morning cup of coffee and I had better stop!  ?)

I can tell you that my thyroid nodules are gone and my thyroid is no longer enlarged since I have gone gluten free.  It is not all doom and gloom.  Most members heal and go on with their lives.  They have no time for this forum and they have lives to live.  

So there is not enough funding or research being done on celiac disease aftercare, but then do we really need it?  Avoiding gluten is the cure.  Aren’t we lucky?  I wish I could say the same to my little niece who has Crohn’s.  ?

 

Oh poor thing  I'm sorry to hear that. 

Yes, I know I could definitely have it much worse. I know people who have multiple food allergies and diseases and are practically housebound because they can't eat any food they don't make themselves. I've known people on immunosuppressants that have horrible side effects and make them sick all the time, or who have degenerative diseases. I'm really being overly dramatic. I know logically this is probably not as bad as it feels right now, but I have suffered from severe anxiety in the past and even though I had it under control, this diagnosis seems to have re-triggered it.

I certainly hope we see an increase in funding and research. To even have something like a Lactaid for celiacs would be huge. Not necessarily even something that would allow us to eat normally, but something that would at least raise our tolerance so we didn't have to worry about CC. Thats the part that, IMO, makes the diet so tedious and results in so many people failing despite their efforts. Even the U of Chicago website says failure is inevitable. You WILL be glutened. To me this is not acceptable. The GFD is not an acceptable solution in and of itself. It's merely a start.