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Member Since 20 Aug 2012
Offline Last Active Aug 23 2014 11:35 AM

Posts I've Made

In Topic: Hurry Up September 4Th

23 August 2014 - 11:40 AM

Yes, your symptoms give you every reason to consider celiac or even NCGS. And forget what others say, IMO gluten related disorders are the most misunderstood of all health issues and YES IT IS THAT BAD, for some it is way worse. Don't fear a diagnosis, it's good to have answers and even better to have an issue that doesn't require meds or treatments - it's something you control by the food you eat - overwhelming as it might seem at first, if it makes you feel better, it is worth the effort!

In Topic: One Week gluten-free, Feeling Worse - Tell Me It Gets Better

11 December 2013 - 06:54 PM

Wow, gluten and dairy together - you are a brave one! Ledge talk down time. It sounds to me like you are experiencing something that not everyone goes thru but plenty do - it's called gluten withdrawal. Google it (you may also find it under wheat withdrawal). Wheat/gluten can act like an opiate and when you eliminate it, some people go thru a rough time - basically your body is in a crisis mode and needs to re-regulate itself. My husband experienced it with serious brain fog and joint pain, everyone is different. IF that is what is happening to you, the good news is....it should end very soon! Some good probiotics would help and a bland diet for now. Get past this rough patch and things will improve quickly!! I'm no expert, just living the life. If it doesn't pass soon, call your doctor.

In Topic: 18 Month Old Failure To Thrive

08 December 2013 - 09:58 PM

Testing is not perfect, particularly with a young child. While a medical diagnosis is preferred, if your baby is obviously healthier on a gluten free diet.. make her gluten free (dairy and gluten problems often go hand in hand), it's only food. I suggest keeping a journal and note her reaction to foods, stool appearance & weight gain... I more than suspect you will see it! Then in a year, review her progress and your notes with your doctor and or peds gastroenterologist. Get her healthy momma, your instincts are right on & then discuss if it's worth getting an official medical diagnosis with the professionals. It isn't going to hurt her to live without gluten and dairy if you make sure she is getting nutrients from good sources, it sounds like it is going to help her!

In Topic: Like So Many Others...

05 December 2013 - 04:11 PM

Well done being your own advocate, it sounds like you found your answer (or at least part of it). You are not alone in your frustration with the medical community (I suggest you check out gluten dude's blog online for others doctor horror stories - so that you know you are not facing this frustration alone).

The good news is, gluten free is working! Given you've gone the medical route thoroughly - I'd suggest you keep doing what you are doing, while researching and interviewing new doctors - there are a few online referral sites for doctors kwoledgeable about celiac and gluten sensitivity (for example Dr Tom O'Bryan has a referral network of docs that go thru his training). I wouldn't obsess about a formal diagnosis and focus on doing gluten free right & finding good sources of information & guidance.

Tons of great advocates who understand your issues and frustration are on Facebook & twitter - and may be a help!
Good Luck!
Ps- my weight issues were similar, I barely ate but was gaining & gaining - it wasn't fat, it was "bloat" - lots of it - lost it all gluten free (even dropped a shoe size, apparently my feet had been swelling rather than growing over the years)

In Topic: Newly Diagnosed And My Head's Spinning!

02 December 2013 - 03:55 PM

Hey, this is a good thing! Yes, it is a hassle (especially at first when you are learning) but once you start feeling well again, it will all be worth it! There is a ton of great info on this site & on Facebook & twitter - those of us living the life tend to know better than our doctors!
I would suggest new posts & pans (particularly the porous ones like cookie sheets), ceramic places are probably of - plastic are not -but if you are sharing a kitchen with gluten eaters, having your own HANDS OFF plates & utensils might help. I read recently about a girl getting glutened from her retainer, I'd check with your doctor/dentist on that one. Kiss your daughter - just not on the lips! And ease of dairy, it helps!!

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