2 month recovery after eating gluten

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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 :)

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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!  

Edited by cyclinglady
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 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. 

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    • Thank you! Indeed it does help. I read something yesterday also about carrots being a grand idea for recovery, I suppose this goes together. I get a lot of sunlight and I eat plenty of eggs, so that should be good for vitamin D until I can find a decent supplement or some of this cod liver oil. I'll up the carrot intake I suppose too. Right now though honestly, I am taking B12, drinking coconut water, and eating yogurt exclusively. Before that I was mostly eating bland things like rice and eggs, but that got me constipated, so definitely nevermind that for awhile... fixed it as soon as I quit and went for softer foods and a near liquid diet. I'm realizing now from a few screwups and recoveries, this being the worst so far... that what the OP said is very true. Not only that, it may be refreshing to realize that the whole "darkest hour is before the dawn" thing seems to be true of this recovery. I keep getting worse and worse and worse and then I'll have a few hours of amazing respite. So I feel like it happens in cycles and maybe the last purge of gluten is when your body is really freaking out. Let's just get through this already!
    • I am so glad you appealed! Persistence pays off! Yay you!
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