Gluten Free Diet...

[akavella]

how many of you have gone gluten free? has that helped your symptoms of POTS at all? where you diagnosed with celiac disease, or was it a personal choice to go gluten free? i am debating on trying it, i have nothing to loose, except for some unwanted gi problems.

[Sarah4444]

I have been avoiding gluten since last fall, and it does seem to help me, particularly with brain fog and GI symptoms. I had antibody tests done and they were within the reference range, but I was already avoiding gluten by the time the bloodwork was done.

[RockiesGirl]

Hi there;

I had my blood tested at an allergist clinic. I am allergic to wheat. Hence, no wheat...but you can't imagine how many products have wheat in them. It has only been 4 weeks since its ellimination so I'm not quite sure if it is helping yet.

[Sallysblooms]

I am not allergic to it, but I have read so much about how it can be bad for the nervous system if you are just sensitive so I stopped in August. I take lots of good supplements at the same time, hard to say how much it has helped but I DO know that is the month I started to improve.

[issie]

I'm not celiac - according to the test. But, I am glutten sensitive. I have been off of wheat for a few months now and it is helping my neuropathy. It has also helped me to not have so many hot flashes - from orthostatic dysfunction. I definitly feel that being off of it has made a difference. I will continue to do my best to stay off. It's not easy.

[kayjay]

I have been completely g free since last September. It takes a long time ( for me anyway) but I am much better. If I ingest gluten now get really sick the next day. I am convinced that I never had "IBS" .. I think my problems have always been due to Gluten. Additionally, My hair and nails are now growing better. I was not absorbing all of the nutrition my body needed. In my opinion, it is worth a try but you have to go "whole hog" I was on and off gluten last summer, but really committing to it made the difference and the results take time. I vote to "go for it" no food is worth being sick!

[Ashelton80]

I have been gluten free since November 2010. It has ABSOLUTELY been crucial in my gaining function back. I tested negative for celiac, but just had a feeling it was negatively effecting my health. I agree with the poster above to go for it and give it a really really good try. Sometimes it can be difficult, but in my opinion POTS is much more difficult. I also think that if I hadn't of removed gluten 3 months before starting Dr. Levine's protocol I would have failed miserably instead of having the incredible success I am having with it right now!! Good luck

[sandymbme]

I was diagnosed with Celiac disease in February. I have noticed a dramatic improvement in my GI symptoms, but as other posters have said, you really have to commit. I can still have bad GI days due just to my POTS. But I can definitely tell if I accidentally ingest gluten, the response is pretty quick (within a few hours) and it's brutal! The one thing I would caution you about, you really should not commence a gluten free diet without seeing a doctor to be evaluated for Celiac disease. If you quit gluten before testing, it throws off the results, potentially leading to a false negative. If you are Celiac negative, you can certainly be gluten intolerant, and change your diet accordingly to see if it helps. Just be care to make sure you are getting a balance diet, and including plenty of gluten-free grains. (rice, corn, quinoa, etc.)

Sandy

[sandymbme]

Oops, hit "post" twice! Brain fog, anyone? lol

Sandy

[Steph]

Just last monday I visited a naturopath and got tested for celiac disease. (confirmed) I spend tues-sat eating as much of my opened/perishible gluteny stuff as possible, then I threw the rest out and took the unopened non-perishables to the food bank drop off at my grocery store. My mum drove in from out of town and helped me out with that and buying gluten-free food items from various places around town.

So I've only been gluten-free for a few days now, but I'm really hoping that it will help with my symptoms. It could even be the cause of my dysautonomia, I guess, since mine's idiopathic.

The naturopath said I have to be 100% gluten free for three months to clear it out and see if it's what's causing all my problems (as opposed to just my relatively minor digestive issues), so no cheating for me.

But GF flour is soooooo expensive! And there's gluten in just about everything easy-to-make, like canned soups or porridge, and in half the ingredients I regularly cook with, like soy sauce! (I got wheat-free tamari, but it's $7 for a tiny little bottle.) And so many things that don't even have gluten normally get contaminated with it in processing.

*sigh* Well, I'm sure I'll get used to it soon enough, and it'll all be worthwhile if it helps. I'd certainly rather eat differently for the rest of my life than take a bunch of meds and still feel crappy.

[cmruls]

There's no gluten in fruits, vegetables or meats/fish/chicken. It takes some change but is doable.

[Steph]

Yeah, I think the biggest problem once I've gotten used to cooking differently will be when I visit family. My grandma is far too old to be expected to learn to cook differently, but she's one of those grandmas who ply you with food (really really GOOD food!) and refuses to take no for an answer. The big family dinners like easter, thanksgiving, xmas, eg, are huge affairs where everyone brings a dish or two, and it's considered very rude if you don't at least take a small bit of everything. You can usually get away with not having your one most hated item, but that's about it. And then there's the problem of cross-contamination, with people using the same tongs to grab buns and meat slices and veggies.

But for my everyday home life, I've already found a few new things that work well. My rice cooker will make rice porridge, which is actually easier than oatmeal or cream of wheat, since I just set it and let it run. It tastes very different, but is very good with dried cranberries cooked in and a bit of brown sugar mixed in to the bowl. I have salted rice crackers that are VERY nummy. And just yesterday I made up a fresh batch of stew using my GF flour. Making stew always wipes me out and leaves me useless the day after, but I make a lot of it and freeze it in baggies.

I even found a way to have Kraft Dinner! I use brown rice noodles and Cracker Barrel Grated Cheese (right next to those green containers of Kraft Parmesan Cheese)

[Ashelton80]

Some of my favorite gf sites

glutenfreegoddess.blogspot.com

elanaspantry.com or maybe blogspot too cant remember

thespunkycoconut.com

everydaypaleo.com

Get some good cookbooks too, it helps a ton to have resources when switching over!!