Glutened, does it get better once healed

[healthysquirrel]

Hello everyone! I hope you are all feeling well.

I have been on a gluten-free diet for about 6 weeks or more. I have complete villous atrophy and lesions in my stomach and small intestine. When my intestines are better, will being glutened be less of a pain in the ass?  Seriously, will the reaction be as bad in a year or so, or does it remain as dramatic?

thanks!

[venusandsam]

Hey Good morning,

I am very new this forum! Your post struck me hard. Although I don't have an answer for you, but I certainly would like to know myself. My symptoms throw me into anaphylactic asthma attacks and I feel so weak for days after. My body just feels horrible. Thank you for a great post!

[Ennis-TX]

The disease is a chameleon and different for everyone...but fact is for most the reactions are MUCH worse if you get glutened after going gluten free. It goes along the lines your immune system was worn out and always fighting like a rag tag army beat and broken, and you were so used to most the pain you found it normal. After going gluten free the army that is your immune system is stronger and ready to fight full strength and your been feeling better. So when it hits your immune system will hit harder and you will feel it more.
I found after 5+ years my symptoms have changed dramatically. I no longer get the doubling over pain and cramps, but get full blown ataxia, sometimes vomiting, and days later brain fog, suicidal thoughts, numbness, and diarrhea for around 6 weeks.
I used to get pain so bad I could not leave the fetal position, extreme projectile vomiting, ataxia, numbness, fog, extreme irritability and violent anger. and constipation that lasted up and over a week.

[cyclinglady]

1 hour ago, venusandsam said:

Hey Good morning,

I am very new this forum! Your post struck me hard. Although I don't have an answer for you, but I certainly would like to know myself. My symptoms throw me into anaphylactic asthma attacks and I feel so weak for days after. My body just feels horrible. Thank you for a great post!

Celiac disease and other autoimmune disorders fall under the umbrella of Hypersensitivity. There are four/five types.  I have found that if one of my hypersensitivity issues (say a gluten exposure that triggers a celiac response/flare up) worsens  my other types of hypersensitivity like IgE allergies or my Hashimoto’s thyroiditis.  

Although this is Wikipedia, it is the easiest to understand:

https://en.m.wikipedia.org/wiki/Hypersensitivity

[cyclinglady]

3 hours ago, healthysquirrel said:

Hello everyone! I hope you are all feeling well.

I have been on a gluten-free diet for about 6 weeks or more. I have complete villous atrophy and lesions in my stomach and small intestine. When my intestines are better, will being glutened be less of a pain in the ass?  Seriously, will the reaction be as bad in a year or so, or does it remain as dramatic?

thanks!

Like Ennis shared, a gluten exposure hits me much harder.  I only had anemia when I was diagnosed.  My glutenings can last for months (e.g. hives for months or hurting to digest anything for weeks).  Each glutening has developed a new set of issues for me.  But that is just me.  Every celiac is different in terms of presentation and experiences.

i can tell you that six weeks in is nothing in terms of healing.  It can take a year or longer to heal based on personal experience and what members have shared.  Just learn the gluten-free diet, do not eat out until you are well, identify other possible food intolerances, and avoid processed foods (even gluten-free) as much as possible to help expedite healing.  (No one has every studied it, but members think that approach is helpful).  

You can heal.  It just takes time!  Welcome to the forum.  

[healthysquirrel]

I was just wondering if once i have the villi back, maybe the digestive symptoms would not be as bad because the small intestine will be less permeable.

Thanks so much for your responses and welcome to the forum venusandsam I am quite new here as well

[cyclinglady]

Again, every celiac is different.  My recent endoscopy (five years after my diagnosis) revealed healed villi.  I do not think it took me five years to heal, but my few glutenings I experienced in those five years were significantly more severe compared to when I was diagnosed where I only presented with anemia.

Researchers think Zonulin might be the source of a leaky gut.  Celiacs seem to have too much Zonulin, so I am not sure that even healed villi would impact how Zonulin works for someone who has celiac disease.  

https://www.npr.org/sections/thesalt/2015/12/09/459061317/a-protein-in-the-gut-may-explain-why-some-cant-stomach-gluten

[healthysquirrel]

1 hour ago, cyclinglady said:

Again, every celiac is different.  My recent endoscopy (five years after my diagnosis) revealed healed villi.  I do not think it took me five years to heal, but my few glutenings I experienced in those five years were significantly more severe compared to when I was diagnosed where I only presented with anemia.

Researchers think Zonulin might be the source of a leaky gut.  Celiacs seem to have too much Zonulin, so I am not sure that even healed villi would impact how Zonulin works for someone who has celiac disease.  

https://www.npr.org/sections/thesalt/2015/12/09/459061317/a-protein-in-the-gut-may-explain-why-some-cant-stomach-gluten

Glad your villi are up and running cyclinglady! I think i was just thinking the future would be better, trying to find a silver lining. Interesting about Zonulin! thanks!

[healthysquirrel]

1 hour ago, cyclinglady said:

Like Ennis shared, a gluten exposure hits me much harder.  I only had anemia when I was diagnosed.  My glutenings can last for months (e.g. hives for months or hurting to digest anything for weeks).  Each glutening has developed a new set of issues for me.  But that is just me.  Every celiac is different in terms of presentation and experiences.

i can tell you that six weeks in is nothing in terms of healing.  It can take a year or longer to heal based on personal experience and what members have shared.  Just learn the gluten-free diet, do not eat out until you are well, identify other possible food intolerances, and avoid processed foods (even gluten-free) as much as possible to help expedite healing.  (No one has every studied it, but members think that approach is helpful).  

You can heal.  It just takes time!  Welcome to the forum.  

You are so right about the processed food, first off most of it is crap and secondly, I get too impatient reading tiny print anyway. It was so liberating to stop even trying and just buy fresh produce. I will buy a magnifying glass at some point.

I do understand that 6 weeks is nothing. I was asking about the future. 

I thought it would get easier physically and I am now finding out that it is not the case. In my mind healing means getting better, but then we get glutened and for some of us, it is way worse than before in terms of not being able to do anything but crawl in to a hole and wait. It is difficult to explain that to myself, let alone others. Looking forward to healing internally whatever the case! thanks

 

[healthysquirrel]

6 hours ago, Ennis_TX said:

The disease is a chameleon and different for everyone...but fact is for most the reactions are MUCH worse if you get glutened after going gluten free. It goes along the lines your immune system was worn out and always fighting like a rag tag army beat and broken, and you were so used to most the pain you found it normal. After going gluten free the army that is your immune system is stronger and ready to fight full strength and your been feeling better. So when it hits your immune system will hit harder and you will feel it more.
I found after 5+ years my symptoms have changed dramatically. I no longer get the doubling over pain and cramps, but get full blown ataxia, sometimes vomiting, and days later brain fog, suicidal thoughts, numbness, and diarrhea for around 6 weeks.
I used to get pain so bad I could not leave the fetal position, extreme projectile vomiting, ataxia, numbness, fog, extreme irritability and violent anger. and constipation that lasted up and over a week.

Hi Ennis, thanks for your explanation. I'm really sorry to read about your symptoms though! That must be really difficult. 

I was very surprised both times I was glutened since the diet.
The first time it lasted a week, my doctor said it was a bug and had nothing to do with celiac disease, so I believed her, then I clearly got xcontaminated the second time and was violently ill for another two days in terms of digestion. I have had huge issues with plantar fasciitis and the backs of my knees are killing me. Walking is not easy, but I thankfully have a bike. 

I WISH celiac was not known only known for the "gluten free diet" and that people knew more about it. I am tired of reassuring loved ones that I am ok, educating and convincing skeptics. I am usually really positive, but I am feeling quite defensive lately. (at least I am able to admit it )

Have a nice evening Ennis.

[Rhotitar]

Def gets worse it can also change even later. My co-worker who also has celiac since childhood yet she only started getting Dermatitis herpetiformis like 6 years ago. 

[GFinDC]

IMHO the reactions may be less severe after a minor glutening once we are healed and or immune systems have settled down.  How long that takes to happen is an unknown factor though.  A year or two may do it though.

[CharlesBronson]

On 8/26/2018 at 12:09 PM, healthysquirrel said:

You are so right about the processed food, first off most of it is crap and secondly, I get too impatient reading tiny print anyway. It was so liberating to stop even trying and just buy fresh produce. I will buy a magnifying glass at some point.

I do understand that 6 weeks is nothing. I was asking about the future. 

I thought it would get easier physically and I am now finding out that it is not the case. In my mind healing means getting better, but then we get glutened and for some of us, it is way worse than before in terms of not being able to do anything but crawl in to a hole and wait. It is difficult to explain that to myself, let alone others. Looking forward to healing internally whatever the case! thanks

 

So sorry to hear that being glutened is much worse than before diagnosis of celiac. It's the same for me as well. 

I'm currently in day 4 of a "glutening" and I am shocked how much worse it is compared to a month ago. My symptoms are mostly neurological and to say that I've been in a panic attack for days is no joke, along with cold, jittery nerves, nausea, pain and exhaustion to the point where I'm sleeping 15 hours a day. 

I always got the pain, nausea and exhaustion, but the panic and anxiety is new and it's HORRID. I'll take the pain any day.

I'm early into healing my celiac (3 month) but the severity of being glutened has me worried about the future like working and having a full life. I hope it's just because I'm still healing and I'm so sensitive at the moment that it's so bad. 

Like you I had full villi atrophy and my small intestine was in rough shape. 

Hope you're feeling better soon.