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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New To This! Post-Gluten Recovery Time And Fatigue
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12 posts in this topic

Hey! So I'm kind of new to this, but have been lurking for a while, and have a couple of questions...

 

For the past couple of years I'd been having issues with bloating and D (sorry), tiredness, anxiety and brain-fog, all of which got increasingly bad during last spring (to the point where I was feeling sick when eating, feeling shaky, uncoordinated and, a lot of the time, almost 'drunk' with brain-fog and lightheadedness).
I went gluten-free about 2 months ago after lots of internet-browsing, and so far the bloating/D have disappeared, the anxiety and brain-fog have decreased, and I feel better within myself than I have for years!

 

However, I'm still feeling very tired, and 'weird'. Yesterday and the day before, eg, I had just enough energy to slump around the house all day! Today I had a bit more energy (enough to go for a short cycle) but I'm still feeling quite light-headed, and it's still nowhere near the level of energy I should have. The whole summer has pretty much been a bit like this - I'm due to go back to uni in a couple of weeks, and am feeling a bit apprehensive about having enough energy to cope.

 

I'm aware I've eaten gluten at least once (max. two times) since going gluten-free, which was definitely a bit of set-back. I haven't been diagnosed (and am really unwilling to go back to gluten for 6 weeks to take the test), so it's difficult to talk about with the doctor. I'm also a little worried because I have a friend who was recently diagnosed with Chronic Fatigue, and it's slightly disconcerting how similar my symptoms are to her's before she got really sick!

So, I guess what I'm asking is;

 

- Which symptoms did you find cleared up quickly, and which stuck around for a while?

 

- How long did it take you to feel any difference from going gluten-free, and how long did it take you to feel completely better?

 

- Is there any difference (in your experience/opinion) between Coeliac and Gluten Intolerance, in relation to the above two questions?

 

- Any other tips/info/inside knowledge for a gluten-free newbie?

 

Thanks guys! This forum's pretty much been my only source of real info so far, so I'm already pretty grateful.

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are you getting cross contaminated somewhere?

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Idk, it's always possible, I guess. My parents both eat gluten. But I've tried to eliminate it all - I can't think what it'd be...

Edited by eeka
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Idk, it's always possible, I guess. My parents both eat gluten. But I've tried to eliminate it all - I can't think what it'd be...

Sounds like you live with gluten eaters. You have your own Pb, jelly, butter tub, mayo, etc that no one is allowed to double dip their gluten knife in? You use a separate toaster, if you use a toaster? A gluten-free only colander for rinsing fruits, veggies, beans, gluten-free pasta?

You might want to get your thyroid tested? Maybe see if you are anemic? Low B12? Low Vitamin D? Those are all things you could have tested, even off of gluten.

Edited to add the link to The Newbie thread

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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I've been avoiding the toaster and trying to use non-contaminated butter/gluten-free chopping board, but didn't think about the colander! Blood-tests were done at the start of the summer and all fine, though I've just started taking multivits, probiotics and omega 3 (today), so hopefully that'll help a bit. Thanks kareng :)

I was just wondering, is it normal for people to take several months to recover (inc. a glutening or two)?

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I've been avoiding the toaster and trying to use non-contaminated butter/gluten-free chopping board, but didn't think about the colander! Blood-tests were done at the start of the summer and all fine, though I've just started taking multivits, probiotics and omega 3 (today), so hopefully that'll help a bit. Thanks kareng :)

I was just wondering, is it normal for people to take several months to recover (inc. a glutening or two)?

It's normal for it to take a year or two, even without any accidental gluten. Even if your gut is healed, it can take a long time to get things back in balance and running smoothly. And you will need to figure out if your new diet gives you enough fiber, or too much fiber, too much fat, etc. all things that have to get balanced out.

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Man, ok. Thanks, I guess! Time to do some patient figuring-out...

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Might want to think about giving up dairy, at first alot of people can't do dairy, I know I can't been dairy free for 4 months now.  I drink Silk Almond Milk and use it in all my baking as well.  

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Your friend with "chronic fatigue" just might have celiac too. If you're really good friends, maybe you can ask her to try a gluten-free diet for a few weeks and see if she notices any improvement.

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No dairy, got it. Am feeling a fair bit better today, so hopefully that's a good sign!
@bartfull, yeah, that had crossed my mind. She does seem to be improving in the way that people with actual chronic fatigue are predicted to, though, so I'm wary of mentioning it to her (and potentially disrupting her recovery, or invalidating her).

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You might want to get your thyroid tested? Maybe see if you are anemic? Low B12? Low Vitamin D? Those are all things you could have tested, even off of gluten.

i agree with karen on this - there are a number of other things that you should be tested for to rule out any other potential cause, just to be safe.  if it's your thyroid, for example, you would do well on a gluten-free diet but there are supplements you doctor can add as well.  i got tested for 8 million things (all neg, but no worry from doubt that it *could* be something else) and i didn't go back on gluten ever again.  but i was sure i didn't have something else that would mimic symptoms and be potentially dangerous if it was left untreated.  nope.  just dumb gluten......;)

 

good luck!

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Aye, I may do that if it doesn't clear up. As I said, I did get a pretty full blood-test done at the beginning of the summer (vitamins, thyroid, blood sugar - the Dr referred to it as a 'full MOT') and I'm fairly sure everything came back fine. I'll defs double-check though, to see exactly what they did and didn't test for. I've also just started taking a multivitamin, so if it's any sort of deficiency it should clear up pretty soon.

Thanks, notme!

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