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Hi, so I'm new here and looking for some help. For quite some time my digestion has been problematic, frequent bloating, gas and going to the toilet often. I have been to the doctors but have got no where and they offered very few explanations. I decided to try and cut out certain foods starting with lactose but that didn't work. I tried cutting out gluten (no diagnosis of celiac, but no tests either, also no history in my family), and for four weeks my digestion has improved loads, other than occasional bloating. I thought I'd finally cracked it and assumed I was gluten intolerant. However, the last few days my symptoms seemed to have returned albeit not as bad as before. Is this normal when first going gluten free or is it that gluten may have not have been the problem after all? Thanks. 

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Hi sbuck,

It's not unusual for a celiac to have bad digestion for quite a while after going gluten-free.  It's sometimes described here as being on a roller coaster of symptoms.  With symptoms getting better and then getting worse and so on.

Going gluten-free without testing isn't a great idea though.  To get the celiac testing you need to be eating at least some gluten daily for 12 weeks for the blood antibodies tests and 2 to 4 weeks for the endoscopy tests.  Going back on gluten for testing is called a gluten challenge, and is often very unpleasant.

It is very easy to make mistakes and get glutened at the beginning of the gluten-free diet.  Mistakes can include using the same peanut butter that a gluten eater uses, or sharing mayo, a toaster etc.  Even kissing a gluten eater can cause problems if they haven't brushed their teeth first

To be gluten-free means eating no wheat, rye or barley.  Some people also have trouble with oats and dairy at first.

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Welcome as gluten-free in DC says we often have issues. I had 13 additional food intolerances after my diagnosis. My immune system was quite dysfunctional after my gluten challenge, and almost every organ was inflammed and not functioning properly.

I got some foods back over time with healing. I now personally avoid gluten, corn, milk, and oats.  During my gluten challenge I joined the forum here and learned how to live the celiac lifestyle properly. Our whole home went gluten-free , which my body very much needed.

So this forum helped me become aware of the fine details I initially did not know when I first went gluten-free. I did not have the right the information to do it correctly.

I don't eat out, I live in a gluten-free home, and I learned in the last few months of my new job the communial lunchroom despite my best practices was not safe enough for me . Our workplace has 3 lunch shifts and most coworkers don't understand how complex gluten cc can be. I stored my lunch isolated from others and had a placemat, but my Dr said nope lunchroom is not safe for you to avoid cc. 

Most general Celiac sites do not give you the fine details the community here does to stay safe and avoid pitfalls. 

Welcome and good luck on your journey to determine your gluten status. 



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