First time getting glutened - 2 months post diagnosis

[mcceliac1]

Hi! So I was diagnosed back in May with celiac disease, and went 100% gluten free almost exactly 8 weeks ago. I’ve been strict about using all my own supplies in my shared non-gluten-free kitchen, my own food, and I eat out very rarely. I’ve, for the most part, finally noticed an improvement in general celiac symptoms a few weeks ago!

Until last week. Tuesday of last week I got sharp shooting pain cramps along with back pain, which has persisted until today (Sunday). I actually went to the ER on Wednesday, suspecting it could be something more severe. I was sent home, and told it was just my celiac. 

A few questions here, since this is my first time “getting glutened”. How much longer until I feel better? I keep thinking the pain goes away, until it sneaks up on me again. It’s been 5 days, I’m more than ready for it to end. 

What foods do you eat when you’ve been glutened? What other tricks/treatments do you use? I’m going to go crazy soon, as this pain is much worse than anything I experienced before diagnosis, and doesn’t seem to be improving. Any advice would be greatly appreciated. 

[cyclinglady]

  On 7/22/2018 at 8:40 PM, mcceliac1 said:

Hi! So I was diagnosed back in May with celiac disease, and went 100% gluten free almost exactly 8 weeks ago. I’ve been strict about using all my own supplies in my shared non-gluten-free kitchen, my own food, and I eat out very rarely. I’ve, for the most part, finally noticed an improvement in general celiac symptoms a few weeks ago!

Until last week. Tuesday of last week I got sharp shooting pain cramps along with back pain, which has persisted until today (Sunday). I actually went to the ER on Wednesday, suspecting it could be something more severe. I was sent home, and told it was just my celiac. 

A few questions here, since this is my first time “getting glutened”. How much longer until I feel better? I keep thinking the pain goes away, until it sneaks up on me again. It’s been 5 days, I’m more than ready for it to end. 

What foods do you eat when you’ve been glutened? What other tricks/treatments do you use? I’m going to go crazy soon, as this pain is much worse than anything I experienced before diagnosis, and doesn’t seem to be improving. Any advice would be greatly appreciated. 

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I am sorry that you are ill.  It does sound like you had a gluten exposure.  ?

Celiac disease is like a chameleon.  Symptoms wax and wane.  They are always changing.  Some celiacs do not have any symptoms.   Celiac disease is not like an allergy which can be swift in developing symptoms.  It is an autoimmune response that happens to be triggered by gluten (unlike other AI issues like lupus or RA where the trigger is unknown).   The antibodies can take a long time to ramp up and diminish.  Some celiacs suffer for a few days and others a few months.  Everyone is different.  Your antibodies could have been heading down and now are ramping up.  

What to do?  Everyone has different coping methods.  I prefer a making a big pot of stew full of mushy meat and veggies.  I eat it for every meal because it hurts to digest even safe gluten-free foods.  Remember, the gut is being damaged.  Within a week or so I can feel a bit better, but it takes months for me to get dairy back.  I might also have developed some new intolerances or issues like hives.  

Give it time.  Do not eat out until you are well.  Eating out is like playing Russian Roulette unless you are at a 100% Dedicated gluten-free restaurant.

After my last glutening, I waited a year to eat out and even then it was a dedicated gluten-free restaurant.  Yes, you read that right!  But a year later, a repeat endoscopy showed healed villi.  That was worth avoiding restaurants! 

I take more risks now, but I am healed.  Give yourself time to heal.  Hang in there!  It will get better.  

[mcceliac1]

  On 7/22/2018 at 10:27 PM, cyclinglady said:

I am sorry that you are ill.  It does sound like you had a gluten exposure.  ?

Celiac disease is like a chameleon.  Symptoms wax and wane.  They are always changing.  Some celiacs do not have any symptoms.   Celiac disease is not like an allergy which can be swift in developing symptoms.  It is an autoimmune response that happens to be triggered by gluten (unlike other AI issues like lupus or RA where the trigger is unknown).   The antibodies can take a long time to ramp up and diminish.  Some celiacs suffer for a few days and others a few months.  Everyone is different.  Your antibodies could have been heading down and now are ramping up.  

What to do?  Everyone has different coping methods.  I prefer a making a big pot of stew full of mushy meat and veggies.  I eat it for every meal because it hurts to digest even safe gluten-free foods.  Remember, the gut is being damaged.  Within a week or so I can feel a bit better, but it takes months for me to get dairy back.  I might also have developed some new intolerances or issues like hives.  

Give it time.  Do not eat out until you are well.  Eating out is like playing Russian Roulette unless you are at a 100% Dedicated gluten-free restaurant.

After my last glutening, I waited a year to eat out and even then it was a dedicated gluten-free restaurant.  Yes, you read that right!  But a year later, a repeat endoscopy showed healed villi.  That was worth avoiding restaurants! 

I take more risks now, but I am healed.  Give yourself time to heal.  Hang in there!  It will get better.  

Expand Quote  

Thank you!! That helps give me some peace of mind, at least. It’s now been one week since I first got sick, and while I’m still not 100%, I’m soooo much better. There have been a few moments in the past few weeks where I briefly considered slacking (eating a piece of cut fruit out of a bowl I knew gluten-spoons had touched...) but never did, and this week was a good wake up call to how strict I need to be. So on the bright side, I realized that!