Gluten Free For Dysautonomia

[Hoshistorm]

Hello. I just saw my doctor today, and she told me it would really help if I went Gluten Free. Does anybody else have that recommendation. Also, anyone know of some good Gluten Free recipes? I would really appreciate it. Thank you!

[misstraci]

Hi Hoshistorm,

I've heard really good results from those who do go gluten free. I myself have attempted the GF diet on several occasions and each time I failed to stick with it. I get feeling so terribly that I just don't care anymore and eat whatever, I know that is not a good way to look at it. But, I'm not sure the reason for others going gluten free whether they have an intolerance, celiac, etc or if it is for their dysautonomia. Try it!!! and let us know how it goes. Here are som links to gluten free recipes I don't know of any good specific ones offhand but all these blogs/websites I've gotten recipes from.

http://glutenfreegoddess.blogspot.com/

http://glutenfreegirl.com/

http://www.elanaspantry.com/

http://glutenfreemommy.com/

http://allrecipes.com/recipes/healthy-recipes/special-diets/gluten-free/

http://www.food.com/recipes/gluten-free

[Hoshistorm]

Thank you very much Misstraci! I really appreciate it!

[lfreem02]

My neurologist’s wife went through something that sounds like dysautonomia, and he did a lot of research to determine how he could help her. They did determine that she has an issue with not tolerating gluten well, so she omitted it out of her diet. It ended up helping a lot with reversing her neuropathy. I went on a gluten free diet a few months ago. I have had improvement with my neuropathy, but I can’t say for sure that it was due to the change. I did splurge on vacation a couple of weeks ago and ate some food with gluten, and some of my symptoms linked to my neuropathy have returned. I don’t know if they are linked, or if I just over did it. One of the good things is that a lot of the prepackaged Thai foods are gluten free and have a lot of sodium. So, it is a good option for something quick and easy, or if you need the extra sodium.

[misstraci]

You're welcome!

[NMPotsie]

I tried it for about 2 weeks. Didn't help my symptoms at all. Anytime I eat a lot of carbs I am more symptomatic, but gluten doesn't seem to make a difference for me.

[Hoshistorm]

I am sorry to hear that NMPotsie. I hope you find something that works for you! Thank you for posting.

[Dizzysillyak]

It took me a whole year to start walking normally so you may want to give this some time. I saw earlier

improvements but this was my biggest. : )

I'd switch to a paleo / wahls or more wholesome diet with nutrients as soon as you're up to it.

Getting tested for nutritional deficiencies might help too.

Tc .. D

[peregrine]

I tried GF for a week and felt worse; I ate a lot of gluten the day after (intentional) and felt better. Who knows? The one thing to watch out for with Thai, Japanese, Chinese, etc food - which often look GF - is that soy sauce traditionally has wheat in it, and many of these can incorporate soy sauce as an ingredient. Gluten free soy sauce does exist, but you have to hunt to find it, and most restaurants just use the standard (wheaty) stuff.

[Libby]

I remember reading that there's a withdrawl period of sorts when you go off gluten. One woman said that her son literally was licking the kitchen table after the family ate because he was so desperate for it. But once you get over that (a few weeks, I believe), then it supposedly really helps.

I've been toying with the idea b/c of both POTS and my Hashimoto's - the thyroid hormones have a similar structure to gluten, so eliminating it may stop my immune system from going ape **** on my thyroid. But the idea of giving up bread just makes me so, so sad.

[peregrine]

Libby - is that withdrawal physical or also/instead psychological? I didn't have any serious craving for gluten while on my trial (someone put fresh baked cookies in front of me and I briefly went "if only" and then stopped caring a second later), but if it's a physical issue, I could see the problem. The weeklong trial was suggested by a nutritionist I saw in the past.

[Libby]

I'm pretty sure it's physical. I think I bookmarked the info, I'll see if I can dig it up.

[Kellysavedbygrace]

Instead of going gluten free I have returned to milling my own wheat - homemade bread, pancakes, waffles and all organic, low carb eating (including juicing.). I thinkit has helped a lot.

I buy wheat berries. (any whole food store or online).

I mill them in my Vita-mix. (a whole food blender -expensive but well worth it)

Either use flour immediately or store in fridge for up to a week.

You can find lots online about this. But here's a quick summary to the theory behind why:

- in the late 19th century & before all wheat was "milled"/ ground

- people would have to use it immediately bc the cracking of the bran/germ would release an slight oil that would make it easily spoil

- wheat is made of 3 parts (the germ, the bran and the white sugary inside- of course the nutrition is in the germ and bran)

- to make it shelf stable, in the early 20th century they began separating the white part from the oily germ and bran- that is what we know as "flour"

- shortly after this was done many people developed "Beri Beri" - a nervous system disorder (lack of Thiamine in diet)

- as a result, food manufacturers started "enriching the white flour with vitamins including Thiamine.

Some people have true gluten allergies- so in that case please disregard. If it is not a true IGE allergy, you may want to try a diet of freshly milled wheat.

[Libby]

Dangerous Grains

Looks like I read it in a book. There doesn't seem to be much formal study on gluten withdrawal - which kind of baffles me b/c just doing a simple google search on gets thousands of hits w/ people sharing their experiences. But this book claims that up to 70% of celiac patients who remove gluten from their diets will have symptoms of withdrawal due to the opiate-like characteristics of gluten proteins.

[kayjay]

I found Gluten Free for Dummies to be a helpful book.

Gluten free has completely resolved my IBS issues. I also can't tolerate fresh dairy (ok with aged cheese though).

My 13 year old is also gluten free. At first I found it overwhelming and difficult. I am so happy to be gluten free and it gets easier all of the time.

[Dizzysillyak]

I'm back. I forgot to say to do a search on gluten on this site. We have a lot of great info here. Also

"theglutenfile" is a great reference for articles on gluten damage.

One doesn't need to be allergic to gluten to have a problem with it. That goes for other foods too. I don't

have any markers for dairy but my shiners more than speak for my reaction. Tc .. D

[Hoshistorm]

Thank you all for your posts. They are really helpful!

I live in a house with 7 other roommates, and we share cooking duties. So, at the moment it is a little hard to be totally gluten free. However, I am taking steps towards becoming gluten free. I wish all of you luck who are in the process, and I thank all of the ones who have done it for your encouragement.

I hope you all have a wonderful weekend!

[yogini]

Did you test positive for celiac or did the doc just make this as a suggestion? I dont have celiac but went lactose and gluten free for a month once. I felt better - had more energy, but could not keep up. You can experience withdrawal or a few weeks, so it's hard to tell whether going gluten free helps unless you really stck with it.

[Hoshistorm]

My doctor just suggested it. I do not have Celiac's disease. I have not been doing too well on it since Friday. I am just going to have to buck up and stick to it. I am just going to have to keep envisioning myself feeling better. LOL Thanks for the tip.

[Guest Alex]

Tried a GF diet for a while but saw no changes, so I'm back to eating "normally". I've seen no relationship whatsoever between my symptoms and what I eat or how much I eat.