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Month-Long Reaction?
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8 posts in this topic

Good morning,

I'm often on this site as a guest, but rarely post (I can't remember if I've every actualy posted...). Anyway, I've really appreciated all of the information that I've obtained here. Thank you to everyone who contributes!

Here's my question... I'm 29 years old and was diagnosed with Celiac disease 2 years ago after a lifetime of one auto-immune disorder after another. Since going gluten free, I've had several accidental gluten exposures due to cross-contamination. I've learned over time what I need to be more careful about and am pretty good about it now. However, I was "glutened" at restaurant about a month ago and am *still* experiencing symptoms (sharp stomach pains, swollen/painful joints - including in my chest [my least favorite], brain fog is slowly getting better, etc.). Is this normal??? I feel like my reactions get longer and more severe the longer I'm away from gluten. I'm wondering if this is normal or if I should be trying to find another source of exposure/other way to solve my problems.

Thank you so much for your help!

Jennifer

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I'm not sure if this is "normal" but it is what happens to me. My reactions last 6 weeks or longer until I start to be a functioning human again. That is the simple wait until the pain is bearable and the fog is lifted enough to be able to think my way out of my sheets in the morning. I get a boatload of other symptoms, the stomach pain, GI, lack of energy, some I am sure I'm not thinking of right now, but most of those resolve in closer to a month or less. It is only the fog and all over pain that remain longer. Of course, it can't hurt to take a second look at everything around just to make sure you aren't getting hit by anything around you.

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Hi Jennifer,

My reactions are very similar to Adalaide's. They last at least 4 weeks, usually 6, which is why I am so super careful. I don't eat out at all. I wish I could, sometimes, but I don't even like going into restaurants anymore. Makes me nervous. And it's definitely gotten worse over time - I've been gluten free for 5 years, and the reactions were not this bad in the beginning.

Can't hurt to re-check all your stuff to rule out continued exposure, but I just wanted to chime in and say that reactions can absolutely last that long. Hope you feel better soon!

-- Christina

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Thank you both! It's good to know I'm not the only one! My husband gets worried (and I have my moments as well) when the chest pain hangs around for a long time. Eating out is so nerve-wracking these days!!!

Thank you again!

- Jennifer

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I have had reactions that last that long too, but that doesn't mean that it isn't something else, or even something in your diet currently. It wouldn't hurt to look over your diet carefully and eliminate anything new for now. You could add those things back again when you are better. It also wouldn't hurt to pay your doctor a visit. I would hope that you would at least be noticing some improvement without further gluten ingestion. I hope that you feel better soon.

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I've had reactions last a long time. I took a vitamin with gluten in it for a month. Had no idea there was gluten in it until I went to throw the bottle away. The ingredients had changed. So now I make sure it says gluten free. It's been a month since I was glutened and the symptoms are just now diminishing. It seems like the longer you stay away from it the longer it stays in your system or the worse your reaction is.

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I can't think of anything new that's been added to my diet and I honestly hate going to the doctor... I hate "hunting" for new problems. I'm hoping symptoms diminish soon! Thanks for all the help!

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I honestly hate going to the doctor...

I know what you mean. I hope that you notice an improvement soon so it won't be necessary.

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    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
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