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Anyone Tried To Do A Gluten-free Diet?


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As I'm on a frustration roll this week (goodness)...I'm grasping for straws to get better. Since I seem to be so sensitve to things and have allergies, I'm wondering about going gluten-free a month.

I love pasta, bread, cakes, etc but I need to lose weight anyway. Sigh. So it's a good time to try this at least to see if there's some improvement.

Has anyone tried this? Any good results? Even on the FAQ it says Celiac/Gluten could play into POTS flare-ups so I may give it a go in September. It'll be like early Lent if I don't starve.

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You're a brave, brave woman. I would fight for my carbs...grr. A friend of mine is gluten-free, and she thinks it helps with her POTS. Let us know how it goes!

Best of luck,


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I recently went gluten and dairy free for stomach issues. I have found now if I do it gluten my dys symptoms are worse. And let me tell you that I was carb queen! Never ever thought I could do it and in fact I'm not just gluten free but all grain free. So no rice, millet, quinoa etc. So gluten free options at the store are not options for me.

At first I was terrified about what I was going to eat but its easy now. And I have not lost weight, which for me is a good thing. I eat a ton of nuts and have upped my fat intake to make me feel full. My husband did the diet with me though and he lost weight.

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I tried this for three months for another reason and it did not help me.

There are PUHLENTY of carbs eating gluten free, trust me..if you eat the GF breads, baked goods, still plenty fattening so it's no weight loss diet.

Gotta watch everything..but the GF breads also bothered my hypoglycemia so I had to pay more attention...eat with proteins/some fats..just like I do gluten based breads. Some of the breads are denser and more carbs per slice than other breads..

GF breads are expensive and it's worth going to a GF forum to find the best brands of things to try.

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Thank you everyone! I do want to try this. I should lower carbs anyway so will have to limit gluten-free breads.

Can't eat nuts, so will figure out proteins. I think it's interesting some people are helped/others aren't in my searches. I guess it's the whole POTS and it's underlying issues are so diverse.

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My son tried a gluten free diet for 8 months. He stuck to it religiously. At first he thought it might be clearing his brain fog a bit, but then he went back to his status quo. It really did nothing for him. At least now we know. At the moment, he's trying to keep his gluten consumption low, but does have a small amount when the urge strikes - a slice of pizza or a burger roll now and then.

I'm not trying to discourage you - by all means, give it a try. Gluten isn't really healthy for anyone. I NEVER thought Dan could give up gluten, but there are so many substitutes out there. You just have to try lots of brands to find the ones you like. I'd be happy to share info on what he likes. And be prepared to spend a lot more for your groceries.


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I gave up gluten, diary, soy, corn and chemicals 4 years ago and gave up 98% of grains about 2 years ago and high oxalate foods last year. And I still have OI (Orthostatic intolerance) and PEM (post exertional malaise) but I've improved quite a bit from where I started in 1990. It's obvious now that giving up gluten alone wouldn't have done that much for me ... those GF grains / goodies aren't any better for us than gluten filled garbage food is. ;) These kinds of foods cause spikes in blood glucose levels ...

Have you read about leaky gut ? Functional / integrative doctors say that this is the reason for most chronic illnesses.

Evidently this idea is catching on because my GI just told me last month that 90% of our immune systems are in our digestive tracts. And he recommends probiotics now ... it's nice to see traditional doctors accepting these ideas.

A few months ago, I started being able to digest most, if not all, supplements without feeling sick so my GP thinks I should be over this fairly quickly now ... I'm taking about 30 different supplements, including EFA's, the Sinatra Protocal, B vitamins, aminos and minerals, so we'll see ... basically most of this is the equivalent of a multi + , but I never found one I could digest so I had to try each nutrient separately.

BTW. if you're having trouble sleeping, a combo of 3 mg melatonin, 3 - 400 mg theanine and 100 mg 5 HTP has fixed that for me ... I'm sleeping like a log ...

go slow if you decide to try this though ...

Also, Dr. Hadjivassilou tells his patients with gluten ataxia that it will take them a year to get those gluten antibodies out of their bodies. That's how long it tooke me ... You have to be careful because most of those "GF" foods really have minute amounts of gluten in them .. so you aren't going to heal if you're getting gluten still ...

good luck ... Marcia

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Gluten isn't really healthy for anyone.

Actually gluten is a high protien, low fat staple for many vegans. It is added to most fake veggie meats and it isn't a problem unless you have gluten issues. Even when my own iGg (iGe? ...) blood tests came back positive for WHEAT, (in that my body was making antibodies agaist wheat in my diet) it didn't show up for gluten alone. I do better with one of my own homemade (and amazing ;-) gluten based setein roasts than I do with take out pizza.

For me, it seems my body is prone to autoimmune reactions to anything I eat on a "regular" basis. So I do well on a "rotation diet" ... where I split up food groups and eat them each once in four days. So for instance if I am eating dairy on Monday ... I might have yogurt in the morning, a cheese omlet at lunch and a cheeseburger for dinner ... but then I wouldn't have any cheese products (or eggs or whatever was in my veggie burger) until Friday.

Rotation diets are particularly good if you have already been on an elimation diet and have foregone dairy, wheat, eggs, citrus, rice ... or whatever you suspect your own triggers are. One way to take a stab at it is to make a list of EVERYTHING you have eaten in the past week. Sadly for most of us ... our ingredient list isn't that long. You then eliminate those foods (or at least the ones with several tally marks indicating multiple appearances on your kitchen table) and plan a healthy balanced diet without them. I worked with my Doctor and a special nutritionist when I did this for the first time myself. It may be you are eating lentils or lamb, turnips or sardines ... but they will be "new foods" for your body to play with.

After 9 months, I was able to put most of the culprit foods back into my rotation ... one at a time. I do pretty well on most anything now --- in moderation. And always maintaining a sugar minimal diet.

The last 'diet' modification I made was a sweeping one last year by way of hidden MSG foods -- check out http://msgmyth.com ... she has lots of free info on what that's about. And I do believe its another thing that can help ... some of the people ... some of the time.

Good luck finding what helps you ... in this moment.


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I got thrown into all of this natural stuff in 2005, so I'm still trying to learn how this all works ... I don't react to dairy unless I've eaten it 3 days in a row. And then I only get raccoon eyes which I'm willing to live with so that I can have dairy. ;) My labs were normal for this so I don't show antibodies ... But, my doc, upon seeing my raccoon eyes, told me that I can't eat dairy EVER ... she said that my body is telling me that it can't handle it so I shouldn't be putting it into my body at all.

I've heard others who said that rotating foods that they were sensitivce too worked for them, so I thought it was ok too. What my doctor said makes sense though ... that if our bodies are telling us not to eat something, even if it takes 3 days for us to get a reaction, then we shouldn't be eating it ...

I'm asking because I've had high esonophils consistently for a few years now, and I'm not sure how's the best way to address all these allergies ... unless it's through healing our guts .. I already am less reactive to mold or perfumes than I used to be.

BTW. I've learned to live without these foods and am happy with my diet now ... I'd rather feel good that eat foods I'm sensitive to.

Oh ... I forgot to add that from what I've read our bodies weren't designed to digest wheat, soy, corn or dairy so these aren't good for us. And anyone with a chronic illness should eliminate these ... the Paleo diet info explains this better than I can ...

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I was put on an elimination diet that eliminated gluten, dairy, nightshades, certain other vegetables, certain nuts, many fruits, and all animal protein but free-range chicken and wild game by a neurologist. Everything I ate had to be organic as well. I also gave up caffeine and already did not drink alcohol. I was supposed to maintain my former calorie intake. Prior to being put on the diet I was already eating fairly cleanly (wild game and chicken only, lots of vegetables and fruits, only the occasional processed sugar, some processed flour, not alot of preservatives, and my vice was drinking about three or four cans of coke a week). The doctor had warned me that it might be hard to go off of the sugar and the caffeine, but that should rectify itself within a week or two. I was on the diet for three months and had no improvement in my symptoms. It was actually a very bad experience for me. Despite eating a very balanced mix of protein and carbs and getting lots of fruits and veggies and fats from nuts and olive oil on the diet as well as maintaining the number of calories I was taking in and actually decreasing the amount of activity I was doing I lost 14 pounds in two weeks. I lost many more in the next few months, even when I was eating twice as many calories as I was before going on the diet. I had zero energy and always felt as though I was going to faint. I was not hungry and had to force myself to eat and yet seemed to not be getting anything out of the food. All of this rectified when I went back to eating gluten and my fairly healthy but not restrictive diet.

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only helped my guts...and some of my pain, but definitely did not do much overall for my POTS. I continue to stay on my g/f diet because my stomach feels much better when I stick to it--with cheating, i get bloated, and my guts don't work right--either I am running to the bathroom, or i don't go at all.


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Wow, I'm really surprised to find all the special diets you have all tried! I guess if we find something that helps us improve a little, it is better than the opposite.

I do get sensitive to various things (had a huge rash to Cashews, but no Cashew allergy on the skin test). I eat a heck of a lot o dairy. Way too much milk, I'm sure, but I don't have any side effects that I can tell. It wouldn't hurt to cut back on that, too, though.

I do feel bloated/tired after a lot of carbs and it sends my POTS raging once in a while. It may just be the blood rush/glucose drop but if it's making me feel bad just as well cut them from my diet.

Now I'm balancing what to do. I cook dinner when I'm not working or working less than my spouse who is no good in the kitchen. He likes his pasta and bread, so will have to figure this out!

Is rice safe to eat? I like my rice/chicken/broccoli once a week. ;)

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I haven't tried gluten-free. I feel like I've tried everything- else- free and find it harder and harder to enjoy food because I can't eat what I love.

I have to avoid a lot of foods because of "allergies"; foods that give me nasal or stomach upset.

Then, there's the dairy, fruit, alcohol, and cereal avoidance; foods that make me urinate too often and give me pain. (Caffeine doesn't feel like it has the same effect as these foods and I can actually have a little more as long as I am off these foods)

There's also the GI frequency elimination diet I am on now too: peas, beans, and large quantities of vegetables in any one day. If I do any of these, I have abnormal pain and frequency.

A long time ago, I cut out caffeine and alcohol when I worried they would have an effect on whatever bizarre unknown condition I had. I gradually added them back in; one glass of alcohol could help but I couldn't have more than a glass of something a week or it felt bad. Caffeine was sort of neutral and might increase my pulse a little. Alcohol is now out again because of the urinary problem.

I minimized sugars accidentally when I ate with a diabetic friend every day: I felt terrible with that.

I know I don't enjoy eating a lot of bread and pasta but can't get myself to try to gluten-free diet until I know I have a bad reaction to it. I'm pretty sure I have not eaten gluten for a few days and have never noticed feeling better for it (with dairy elimination, it was a whole different story after three days).

I was starting to think that alfalfa sprouts were where I would end up. I think these are the dietary staples of people with "orthorexia" who eliminate almost every food for perceived health benefits. I was really happy to find out that people with Lupus or a predisposition to Lupus shouldn't eat them.


Finding this out gave me renewed hope that I wasn't deliberately ignoring the one amazing superfood I had to structure my life around. (I also deduced that nobody with orthorexia has Lupus -- or maybe 10% do acquire it and then, with nothing they can eat, they develop anorexia nervosa?? ;) ).

Maybe I just need to eliminate foods here and there, maybe one day my system will settle down, and maybe, I can reintroduce a few things I have not tried in some time ... :P Maybe one day, I can have fried onion rings ... Hope springs eternal.

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I've learned all of this the hard way ... ;) In 2005 my whole digestive tract was hurting from top to bottom. I either had diahrea or constipation, GERD, gas, reflux, gastroparesis, diverticuli, hemeroids or something wrong all the time ... then in June 05, I dropped 10 lbs in one month due to constant runs. I was down to 106 - 108 by then and I'm normally 120. Imodium wasn't working ...

My GP told me to eliminate wheat, dairy, corn, soy, chemicals and anything I knew of that hurt my digestive tract. In September 05, I was reading on the web and learned about how gluten can affect our bodies. BINGO ... that was me ... a mess ... :P

From there, I went on the Paleo diet to fix my blood glucose problems (chronic hypoglycemia) and while on it, I ate too many high oxalate foods and got kidney stones. FYI .. This is what a lot of people with leaky gut struggle with only I didn't realize it until afterwards.

You all may want to look at the oxalates in your diet for urinary symptoms. Too many oxalates can lead to kidney stones and vulvodynia. I'm guessing that most of my UTIs over the years were actually small kidney stones based on my symptoms because I've noticed that if I eat too many oxalates, my UTI symptoms re-appear as does my vulvodynia. (Um, I didn't realize and neither did my GYN that my vaginal pain was vulvodynia until the low oxalate diet eliminated the pain. DUH !!! It had been chalked up to menopause. )

Also though, I'm learning that probiotics help here too. FEM dophilus by Jarrow appears to be helping with some female symptoms and I've only been on it a month. I've been using probiotics since 2005 but this one is working differently ... anyone with kidney stones is low on a good bacteria called o.forminges so my assumption was that vulvodynia could benefit from a probiotic too ... so far so good ...

What a trip, eh ?

BTW .... on the orthorexia ... I can't believe the psych community came up with a name for healthy eaters. :o:lol::lol: The pics I've seen of those who have this appear to be people who were prone to anorexia to begin with. I'm a very healthy looking 54 year old woman at 5'5" and 120 lbs ... I love to eat. I just refuse to sacrifice my health for foods that make me sick ...

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it looks like this has mostly been covered, but my two cents....

I do eat gluten-free and it does make my POTS symptoms better - but I suspect this is only because I have a known gluten intolerance. It's kind of like with my thyroid disease - if I'm not taking the right meds for my hypothyroidism, then my POTS symptoms also get worse --- but if I didn't have hypothyroidism, taking thyroid hormones wouldn't help my POTS symptoms (obviously). If I'm eating gluten, POTS gets worse (probably because the GI issues lead to dehydration).

I suppose it can't hurt to try a GF diet and see how you do, but I'd recommend getting tested for celiac disease/gluten intolerance before you start. That way, if you do in fact feel better, you won't have to go back to eating gluten to get a proper diagnosis. But I suspect a GF diet would have limited positive effect if you don't happen to have a co-morbid gluten allergy of some kind.

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