Removing Gluten From Your Diet

[misstraci]

If you have removed gluten from your diet, did it help you feel better and if so, how long before you saw any improvements?

[Ashelton80]

I see results in less than 2 weeks. Usually once the withdrawal type symptoms disappear I can tell a huge difference right away. I am starting to think that gluten intolerance is just a sign of a much deeper issue. More than likely leaky gut. Normally it's not just gluten that's an issue. Dairy, corn, etc. become apparent once you're out of the gluten fog.

[Alice]

I started the Paleo diet, non gluten, non diary, non a lot of things And it made me feel great!!

No sugar also works for me. I still eat a lot of fruit and veggies but those are 'good sugars'.

Gluten blows and diary give diarrhea and sugar raises my BP and HR.

So I eat a lot of fruit/veggies/nuts/meat/eggs and trust me, you can make a lot of snacks with those ingredients

[Katybug]

Unfortunately I'm on month 3 and no improvement in my symptoms except for one particular type of pain in my stomach but I'm going to keep going for a while since some folks don't see improvement for a while.

[spinner]

I sorta did it while i was on atkins and lost weight. For some people its definitely essential--you can be tested for it--- for others the grains and bread just maybe makes them gain some weight.

FOr everyone else avoiding processed foods and sugars is seriously smart. MSG and aspartame are basically the same kind of trouble

for others.

[khaarina]

I tried a gluten free diet for a month and had no change in symptoms while on it or when I went back to regular food.

[westernmass]

I have a list of known food intolerances, including gluten. I feel better within a week when I am strict on this diet, and my complexion is so much better! However it is a tough diet to follow and I keep repeating this basic pattern: two weeks on, on week off, three weeks on two weeks off, and so on... Especially this time of year I keep falling off the diet. Am currently getting back on it, so I find this post motivational to stick with it!

Fwiw- I have tested negative for celiacs.

[peregrine]

Just one week of gluten free here - no big improvements or changes other than having less appetite. I've heard from folks here that I might need to try longer - the nutritionist I saw at the rheumatologist (who specializes in joint-centered nutrition) said one week was enough, but I occasionally ponder longer.

[misstraci]

Thank you everyone for doing the poll and for your responses. I guess it's working for some and then not so well for others. I've also been tested for celiac and it was negative however an ALCAT food test I had said I had moderate gluten sensitivity and then had a doctor tell me that the ALCAT test was not good or valid, so, I don't know. I tried a few times to go gluten free, I never lasted more than a week and never felt better but I hear so much positive things about it that I want to give it another try and maybe this time will be the lucky charm!!!

Good luck to others who are going to try and congrats to those who feel better... you are strong/sticking with it, I find it difficult, I guess I'm a southern girl and i love my biscuits and sweets and treats and I know they can be made with alternate flours, etc but I'm kinda stubborn and set in my ways although if i could potentially feel better from it, i guess its worth it!

[jkoconne]

I've been gluten free for 5 years now! It took about 5months so see a difference but i was also cheating here and there during the first few months. Being off gluten has made things sooo much better!

Gi symptoms are my biggest issue with pots and let me tell you if I eat wheat I know within minutes!

I get terrible brain fog, neasua no meds control, muscle aches ect. It starts with the the brain fog where i have a hard time processing what people are saying to me and how to respond followed by blurry vision. When this starts Im symptomatic for at least 3 days..its the real pits!

For new gf members my advice is stay with it! try a lot of different brands of food. It took me a few years to find all the good ones...and trust me I eat really tasty stuff. My paretns and Bf eat it when im around and they sometimes cant tell the difference. And no, they arent just being nice. They tell me when it doesnt taste good haha

Feel free to message me if you need help finding good brands

[FarmerAmy]

I am on a Candida diet right now (no gluten, no grains, no dairy, no sugar, no processed foods, no yeast, no starch, etc). I make sure to eat a huge salad with lots of leafy greens (kale, spinach, arugula, etc) every day. I don't feel an improvement in my POTS symptoms, but I do feel like it has improved my digestion and overall health.

My husband and I own an organic vegetable farm, so I am really into food! I've spent a lot of time learning about food issues over the years. What I have learned is that our Western diet is full of junk and poison and it is making many of us sick. Here are some of my favorite resources for anybody who is interested:

In Defense of Food by Michael Pollan

Food Rules by Michael Pollan (super short book - only took me 1 hour to read)

Dr Terry Wahls - her TedX video on YouTube is great; so is her book Minding My Mitochondria

I am also interested in reading Wheat Belly, but haven't yet. Wheat has been bred so much that the wheat plant today is very different from the wheat plant of 100 years ago. The idea is that this new wheat is much less digestible and that is why we have such an increase in gluten intolerance.

I am really passionate about food issues. If you look around, so many more people have food allergies or food-related illnesses than they did 50 or 100 years ago. Our diet and food system is killing us!

[kayjay]

I have been gluten free for about 3 years. I will never go back to eating it, however it took me a long time to notice an improvement. I want to say that after a year I really noticed a big change. Off of gluten I have no IBS at this point.

About two months ago I was accidentally given gluten in a restaurant. I don't get sick right way but when I do eat gluten I am sick for about 3 or 4 days.

I still have POTS but almost never have any GI problems or migraines.

Hope this helps. It is a hard diet to stick to until you are sure that it helps. Now it is a piece of cake (G free of course).

[YolaInBlue]

I had GI issues and horrible dizziness after meals with onset of my dysautonomia. I know, I have blood pooling in my stomach. I was already off diary except yogurt and kefir made from goat's milk, and some cheese from time to time. I've been using almond milk for about 3 years. I went gluten free, refined sugar free, added probiotics and vegetarian digestive enzymes. I crave sweets so I had a teaspoon of manuka honey a day to stop my cravings. My GI issues resolved within 6 weeks. I'm still gluten free. I have hard time with sweets, though. I eat small meals every 2-3 hours. Occasionally I have minor stomach pain, usually when I cheat on my diet. Going gluten free was a great decision for me.

[Alan-pots-IST]

Stop eating gluten!!! it realy did help me its not eazy but you have to do it.

[kitt]

Great topic.

Am convinced going gluten free would help a lot of people with neurologic issues as well those with suppressed immune systems.

I've been 100% sugar free for seven years, and eat a really 'clean' diet. Organic, and no processed foods etc...

Want to go gluten free, but am not 'ready' to do it right. No cheating etc... My diet's so limited right now, and sometimes the only thing I want to eat is pasta.

There's a gluten free vegan restaurant we love, and when we eat there I always feel like my body is saying 'thank you' all day long.

[Dizzysillyak]

I've been gf for 7 years now and will never go back to eating it. I felt less shakey by the end of the first day, my narcolepsy was gone in 7 - 10 days and I started walking normally (ataxia) after 1 year. I read that it takes a year to get over gluten ataxia.

I've actually been paleo for 4 years since I appear to have trouble with other grains too. I'm currently experimenting with grains and legumes again. I don't feel as bad right away when I eat these now but I'm not sure why. Or if these are causing problems later in the day. It feels like a blood glucose problem.

theglutenfile has some great info on this ... tc ... d

[misstraci]

Thank you all for the additional information, personal experiences, etc. I love to hear good news like what you all have seen. I'm' going to try GF one more time and hopefully stick with it this time. You've given me more reason and desire to try harder because good things will become of it (hopefully)

[Psalm 23]

I decided to go gluten free about a month ago and am feeling much better for it. At this point the improvements realized are GI but it's only been a short time so there is always the potential for other symptom improvement. I initially wasn't very enthusiastic about eliminating gluten as I have already had to embrace a very restricted diet for better symptom control but it's all about pursuing whatever might be helpful so in this instance it's worth the food sacrifices for me.

My husband and I regularly dine at a local vegan restaurant as well. I wish it was entirely gluten free but they do at least offer some gluten free entries.

A few weeks back I discovered a couple of different rice pastas that were quite delicious. Let the culinary adventure begin.

Janet

[Carrie]

I was tested for a bunch of food allergies and sensitivities and everything came back negative. An integrative doctor suggested I remove gluten and dairy anyway. I tried it for over 6 months and actually felt worse, with less energy, probably due to not getting enough carbohydrates. Now I'm back to eating bread and milk again, and feel better (at least back to baseline).

Some people may have bad reactions to these foods, and maybe these foods make some people's symptoms worse, but I think everyone's case is unique and some people might have dysautonomia due to a different nervous system problem that isn't directly related to food.

[pink1975]

I was diagnosed with Celiac two years before I finally got my POTS diagnosis. Going gluten free helped the GI issues, but not the POTS.

[Psalm 23]

Carrie I totally agree with you in regards to a persons dysautonomia resulting from any number of causes and certainly not always dietary but unless a person tries something different how will they know whether or not they are missing out on something potentially helpful. For myself I really don't expect to realize improvements beyond GI but I will take any improvements I can get as long as I am not doing myself any harm in the process. If in the end I find any positive effects are outweighed by any negative effects I can always resort back to my previous diet. In your case, you know through your own personal experience that a gluten free diet does not benefit you in any way and is only harmful in terms of not meeting your dietary needs and making you feel worse. In my opinion, except in the case of those who do have very specific dietary restrictions, it's all about trial and error when it comes to diet.

Janet

[Psalm 23]

I just realized that I had failed to mention that my pots was not secondary to food allergies so the potential for some kind of symptom relief while on a gluten free diet does exists even for those of us without actual food allergies.

[Carrie]

You're right, Janet. I think I've just gotten so discouraged from trying probably hundreds of things, none of which worked, that I get a little wary and am less willing to have hope that something simple will offer a cure.

[MightyMouse]

Please note, that while I DID remove gluten from my diet, it's after I was tested for Celiac and told by my GI doctor that I needed to be gluten free from then on... You can try it and see if it helps you, but if it doesn't it's so restrictive for those who don't live close to specialized grocers or big cities where restaurant options are easily found that I wouldn't suggest it to the average person with autonomic problems as a life choice

[BadBadBear]

I have been gluten free for a few years now. There are plenty of other good carbs - fruits, dairy (fresh goat milk for me), quinoa, rice, yams... I do happen to live where it's hard to get GF foods, but we have found places that accomodate me. When we go out, its sushi, steak and greens, etc. It's not as impossibly difficult as it seems at first glance. As with anything, making up your mind to actually do it is the hardest part.

I am not completely gluten intolerant, but I noticed improvements in my GI tract and skin improvements. My energy is not as wildly up and crashing down, even though I was a careful gluten eater before (meaning I ate complex carbs and not junky foods). I doubt I'll ever go back to eating gluten, I feel that much better off of it.