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Any Advise For A Newbie?

Kirstie

By Kirstie
in Coping with Celiac Disease

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Kirstie Apprentice
Kirstie
Posted

I went gluten free on my own initiative after seeing about 6 doctors with symptoms I didn't understand. I was accused of having an eating disorder because I am underweight, my symptoms were blamed on the contraceptive pill I was taking to manage my extremely agonising period pains (pains so bad I often fainted). Other doctors casually blamed it on periods and "girl problems" and one said I was depressed, I believe she thought I was imagining my symptoms. The last two have said IBS.

So I discovered this board, realised there may be just ONE reason behind my long list of seeming unrelated symptoms (from constant nausea and bloating, to constipation to shortness of breath to mouth ulcers) and went gluten free, after 2 weeks I felt human again, and all of my symptoms either vanished or improved!

I've seen two doctors since and both have said IBS and reluctantly agreed to have me tested for coeliac. I began eating gluten again last Wednesday and spent the night vomiting, slept all day Thursday wandering around like a zombie, Friday was full of nausea and terrible bloating. Saturday I came out in a rash and developed two mouth ulcers. After eating gluten for TWO DAYS.

So I've decided to forget about doctors, live a happy gluten free life because it makes me feel human!

Does anyone have any insane doctor stories or advise on foods to eat, things to avoid and medicines, vitamins or anything else to take to feel better as I begin this new (and hopefully permanent) gluten free chapter?

Thanks

K x

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squirmingitch Veteran
squirmingitch
Posted

How many people here have been down the same road as you have? Too many to count! Good for you; you figured out the problem & you are going gluten-free. Welcome to the board Kirstie!

I'm have dinner cooking right now but will be back later with some info. In the meantime I'm sure others will be on to help you out.

And we have tons & tons of insane Dr. stories. We even have a thread called, "Stupid stuff doctors say" --- it's really, really a long thread.

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squirmingitch Veteran
squirmingitch
Posted

Back again Kristie. Okay, here is a must have link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Be sure to read the entire thread & follow the links that are included & get your printer warmed up.

And here is Stupid Stuff doctors say:

https://www.celiac.com/forums/topic/89599-we-need-to-start-a-thread-on-stupid-stuff-doctors-say/

And ask any questions at any time. Everyone is so willing to help. And it's okay to vent here too --- we've all been there. Now, i will warn you that many go through gluten withdrawal --- some don't.

The best thing you can do is just start reading threads on here & you will learn soooo much.

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    • Sarah Grace
      Sarah Grace

      By Sarah Grace · Posted

      Many thanks to everyone for the advice received and especially to Knitty Kitty.  I have ordered a one month supply of Benfotiamine and very much look forward to trying it.  The expression "I felt like I was dying" really resonates with me.  I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post. Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present! I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂
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      Sarah Grace

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      OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.
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