2 month recovery after eating gluten

[Alicia1975]

Hello.  I am feeling overwhelmed so I am reaching out

I have an 11 year daughter that was diagnosed with Celiac Disease 6 years ago and has recently eaten 2 gluten pancakes at a camp.  Sadly, once again, the recovery rate is so slow.  She ate the gluten 8 weeks ago and her symptoms are getting worse as they have done in the past.  After eating gluten she has a steady decline in health for about 3 months, with symptoms gradually getting worse.  Stomach discomfort worsens but more debilitating is the lethargy, dizziness, hot flushes.  The head symptoms start off hitting her at night and then between the 2-3 month mark they are with her most of the day.  It is really hard to watch and I feel helpless.  does anyone else have a reaction like this from gluten.  Thank you in advance

[cyclinglady]

Sadly, yes!  My symptoms ramp up slowly.  They are at their worse, it seems a few weeks after the gluten exposure and last for another month or two.  Overall, it can last three to six months for me!  Ugh!  

I try to eat easy-to-digest foods because eating anything causes abdominal pain.  I also become lactose intolerant and that takes months to resolve.  I miss my cheese!  My last glutening caused daily hives that lasted for six months and for the first time, I developed acid reflux!   Fatigue, depression and anxiety usually ramps up too.  Of course, I usually go in to visit my GI or allergist when symptoms are overwhelming and my antibodies (thyroid and celiac) are off the charts.  

This disease can very perplexing!  Symptoms can wax and wane.  Each of us are so unique!  

My heart goes out to you.  My 16 year old has tested negative so far, but I feel awful when she is sick and hurting and I know you feel the same.  

Because other autoimmune disorders can overlap, consider having her checked, because not everything is celiac-related.  It is one reason why I end up going to my doctor after a suspected glutening and confirming if my antibodies are elevated.  That and the fat that my symptoms are inconsistent.   Then I just wait it out and good health returns knowing that everything else is in order.  

  I hope your daughter feels better soon!  

[Alicia1975]

 I am really sorry you struggle with this too.  It is really rough.  I thought it quite unusual the fact that her symptoms are worse weeks down the track.  Thank you so much for taking the time to share some of your story with me.  I cant tell you how helpful it is to hear that someone else has a similar experience as my daughter.   This disease is perplexing indeed.  My other daughter with Celiac Disease has very mild reactions after eating gluten.