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Gluten Free 2 Years Still Having Issues


Jen G

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Jen G Newbie

I was diagnosed 2 years ago this July and after looking back on everything I probably had symptoms for at least 5 years before I was diagnosed. I have been on a strict gluten-free diet with no cross contamination. I don't go to restaurants and I prepare my own food at home. I am very careful about checking lables on everything right down to hand lotion. 2 years ago I had almost every symptom on the list except for seizures or thyroid problems. Since I've been on a gluten-free diet my symptoms seemed to have gotten better, everything seemed to have healed so I don't have digestive issues anymore and I've been fairly healthy. But over the last few weeks it seems that some symptoms have returned. I am very tired all the time again. My muscles are cramping, twitching and aching. My blood pressure has gone up again. My skin hurts. I am bloated and retaining water. And my hair is falling out and very dry/brittle no matter what I do to it. I do take extra vitamins (Multi, B Complex and D), but I just had bloodwork done yesterday to test levels. Is it possible that even after 2 years I could have issues again or still with absorption? If not what are other possible issues? Has anyone else gone through this? Thank you in advance for your help.


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kareng Grand Master

Possible it has nothing to do with Celiac?  Check your thyroid? 

dilettantesteph Collaborator

Definitely have a work up to see if it is unrelated.  If celiac, did you make any changes to your diet recently?  You say you prepare your food at home.  It is produce and unprocessed meats?  If eating products, could processing have changed in any of them to add cc chances?  Do you eat gluten-free grains?  There have been studies showing that they can have cc issues.  You can try eliminating suspect items one at a time to see if anything helps.  Some of us get sensitive to lower levels of cc as time goes on.   I hope that you feel better soon.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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