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» LymeNet Flash » Questions and Discussion » Medical Questions » trying to go gluten free, did it help you?

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Author Topic: trying to go gluten free, did it help you?
gigimac
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My llmd keeps insisting I go gluten free. She says it seems to help those with lyme. I do not have celiac disease and I have tried going gluten free before and now trying again, it is hard!!!

Did this actually help anyone who didn't have celiac disease?

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sixgoofykids
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Yes. I still eat 95% grain free (I don't eat any grains on a regular basis). Once in a while, now that I'm well, but never when I was sick, I will have grain when I go out. Like yesterday there was a local Greek Fest and I had gyros.

But when I was sick, I was 100% gluten free.

--------------------
sixgoofykids.blogspot.com

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erist210
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Grain free diets seem to help a lot of people with a lot of things. Try it for a month, if it doesn't seem to be helping add back in grains and see if it makes it worse.

Grains, soy and dairy all affect me once I remove them from my diet and try to add them back in.

If you are just doing gluten free, it is mainstream enough now that you can get gluten free whatever (pizza, bread, burritos, etc) and not miss out on your favorite things too much!

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Lymetoo
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YES!! I believe gluten is the reason many patients do not recover from Lyme. I really do.

go to www.celiac.com for help

PS .. Gluten, dairy and SUGAR!!!

If you get yeast and don't treat it, how will you know when you are over the Lyme??

--------------------
--Lymetutu--
Opinions, not medical advice!

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gigimac
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Wow, grain free. That sounds really difficult. I am struggling to be gluten free right now. I don't really care for milk at all but I do like yogurt and I guess that counts as dairy too.

What do you guys eat? meat and veggies?

I had a sip of coke yesterday for the first time in sooo long and am really regretting it today. I have felt really bad. Not sure it's from the coke but makes me wonder.

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Jessiep
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I have given up all sugar and wheat but not all grains. I still eat oatmeal, quinoa and rice. I'm going to give up dairy too I think (except for the little bit of milk in my coffee every morning!) don't know if this diet is helping. But figure I it can't hurt. I also lost 7 lbs without trying over a month. That has been nice.
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Jellybelly
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I has helped my husband
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SEREN J WEED
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Gluten free for almost a year except on my birthday in August.

Absolutely no health benefit at all except I lost my stomach and 25 lbs. I do eat oats,corn and rice.

Even though I didn't get any relief I would still
do the gluten free...can't hurt and might help!

Also I eat no processed food so I'm sure to avoid
any hidden gluten...wheat, rye, barley.

--------------------
SEREN WEED

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Lymetoo
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quote:
Originally posted by gigimac:
Wow, grain free. That sounds really difficult. I am struggling to be gluten free right now. I don't really care for milk at all but I do like yogurt and I guess that counts as dairy too.

What do you guys eat? meat and veggies?

I had a sip of coke yesterday for the first time in sooo long and am really regretting it today. I have felt really bad. Not sure it's from the coke but makes me wonder.

-
It's not that hard. The hardest is eating out or eating at a friend's house.

You can buy GF breads if you need something like that.

-

COKE = SUGAR = YEAST

PS .. yes, lots of vegetables and proteins

--------------------
--Lymetutu--
Opinions, not medical advice!

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surprise
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Yes, I believe it has helped, with inflammation. I also think my digestion is better.

As you probably know, it doesn't work unless you do it 100%

I will tell you, I am no great chef (my husband is).
If I can do it, anyone can.
I absolutely have to watch yeast, but that doesn't mean I don't eat

gluten free products from the grocery store which are much more readily available-
Udi's GF bread, GF waffles, once in awhile a whole foods GF banana bread that is to die for,

Amy's organic frozen GF burritos, etc. if you look around, you can find stuff for sure.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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cozynana
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I have been gluten free for 15 years and will never go back.

I was soooo sick all the time when I ate gluten.

It is not hard to eat gluten free. I you are wanting some recipes that are good I would love to email you some if you PM me.

There is a great peanut butter cookie, a pumpkin muffin or can use to make a sheet cake, chocolate brownies, pancakes, pecan tassies. I only wish gluten was my only issue.

I am on a very strick SCD but stricter than that just trying to survive. Be grateful for the foods you can eat.

Again, if you would like some of these recipes I would be happy to share.

Try making meatloaf with crushed Frito chips instead of crackers. It is great. Creation of my son's who's son is Celiac.

Challenge me, ask me to come up with a recipe you wish you had. The only one I cannot find that is suitable is a really good bread.

Also, look on allrecipes.com for gluten free recipes. There are quite a few good ones on there.

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Catgirl
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I feel better eating gluten free. There's not much I have been able to eat though because yeast hit me hard once I started abx.

What's even more challenging for me now is to eat not only a yeast free diet, and of course, sugar free, as well as gluten free, but now a fat free one (protomyxzoa). Now THATs tough!

Surprise, how do you do it with bread, burritos and waffles? Isn't there fat in those foods?

Cozy, I thought we weren't supposed to eat peanuts (not really a nut)? I thought I read that--Burrascano's protocol? Can't remember (lyme brain).

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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erist210
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Peanuts are technically legumes. That's why the primal/paleo folks avoid them.

My LLMD wants all her patients to eat a low/no-fat vegetarian gluten-free diet. I'm doing the opposite at the moment - a high fat, high protein paleo diet (but with no gluten or grains, except rice, which isn't paleo but how bad can rice be really)

so yes, mostly meat, vegetables, and nuts/seeds around here. I'm underweight and have a hard time putting on weight even when I am eating 3k calories a day, so it is a challenge because of that.

I believe any diet can be adjusted to once you figure out your "go-to" meals and snacks. And not eat out.

I don't know, I go back and forth, sometimes I think it isn't helping enough to keep doing it, and the time of my life pre-lyme when I felt the best I ate like crap, but it does seem to affect me when i add it in

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Razzle
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Yes, gluten-free diet has helped. Was diagnosed with non-Celiac Gluten Sensitivity (based on EnteroLab testing) plus was told I have one Celiac gene, so I gave up gluten for a 3 month trial.

Interestingly, my gut only improved a tiny bit, but the monthly he!! week became a whole lot easier to tolerate...the migraines and cramps disappeared.

So I extended my gluten-free trial to 6 months, then did a gluten challenge. For my challenge, I ate a gluten-containing communion wafer at church.

I had nausea, diarrhea and general gut discomfort for about 2 days, and severe migraines & cramps at my next 2 monthly cycles (even though I had returned to my strict gluten-free diet immediately after eating the one tiny communion wafer).

Now, I've even become sensitive to airborne gluten, so I have to be careful and avoid grocery stores with bakeries in them, especially in the morning (bummer!) when the bakery is busy making stuff for the day.

So I will be gluten-free for life. I should also mention I had to also give up corn for the cramps & migraines to totally disappear.

I'm still trying to figure out whether I'm sensitive to airborne corn...the smell of popcorn does stuff up my nose pretty good, but that may be the fat and not the corn (I'm allergic to "burned" vegetable oil).

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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jackie51
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I am mostly GF. Occasionally I'll have something and I'll be okay, maybe a headache or brain fog. If I eat it two days in a row, then I'm in big trouble stomach wise.

So, currently off the stuff. Ate too much over vacation. Argh.

It won't hurt to try. You may find it's just a better way to eat. I do eat better in general when I'm GF.

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surprise
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Catgirl- I am not counting fat calories- I'm 100 pounds.
I finally got back to exercise recently, too

Light weights, walking. Feels great.

I don't eat the breads daily, but really a nut bread is the only one with higher fat-

and the Amy's burrito- has some cheese- yes fat, I love those.
I also take Diflucan.
Not perfect. But 100% gluten free.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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koo
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When you say you have done it before, for how long? Did you give it at least a month to see if you benefited?

Try looking at it with a different perspective....like it is part of your prescription protocol.

I do gluten free, sugar free, and pretty much starch free. I try to do organic and GMO free. Do I see a major benefit? Eh. However, I know to fight a chronic stubborn disease it's not only about what you do eat, but also what you DON"T put in your body.

I didn't have the lyme joint pain so perhaps that is why I am not seeing a major benefit.

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sixgoofykids
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quote:
Originally posted by gigimac:
Wow, grain free. That sounds really difficult.

What do you guys eat? meat and veggies?


It's really not bad. And yes, pretty much meat and veggies. Also eggs, fruit and nuts. I eat a lot of avocadoes and apples with raw almond butter.

Someone mentioned rice .... I get bloated from rice. I could tell as big a difference when I cut rice out as when I cut gluten out. I also dropped 8 pounds (a good 8 pounds, slowly, of fat, muscle looks more defined) when I cut out all grains.

I am not sick, and I even notice a difference. I am into fitness and primal eating (The Primal Blueprint) .... different from paleo because we consume some dairy and eat potatoes/sweet potatoes/purple potatoes in moderation.

--------------------
sixgoofykids.blogspot.com

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joanthebone
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Just want to mention Millet bread. No wheat and gluten free. It is delicious. I do put a little butter on it-I eat it for toast. I enjoy soft boiled eggs with it.
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AuntyLynn
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There are lots of gluten free pastas on the market - brown rice, Jerusalem artichoke, spelt.

Cozynana -

I'm sure LOTS of folks would be interested to try your "tried and true" gluten free recipes!!

Why not start a new thread in "General Support" and post your favorites for us? I would sure be interested to see those peanut butter cookie, pumpkin muffin and brownie recipes!

By starting a "gluten free Recipes" thread, anyone who has something great to share, could add to your topic.

BTW, I have a sister who has been GF for years. One christmas I made my best brownies, with brown rice flour, as a gift for her. This is an especially "gooey" recipe, but with the brown rice flour ... it was almost like soft fudge (kinda strange). Moreover, I thought the brown rice flour was "crunchy."

As a baker, I was NOT happy with the results, but my sister sure was! She just said:"It's been so long since I had ANYthing like this... I'm lovin' it."

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Keebler
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-
To be sure all is considered and our efforts are not for nothing:


HIDDEN SOURCES OF GLUTEN (each link has detail the others may not):

http://www.glutenfreehelp.info/wp-content/uploads/2011/03/TS-Hidden-Sources-of-Gluten1.pdf

http://www.celiacsolution.com/hidden-gluten.html

http://www.tacanow.org/family-resources/hidden-sources-of-gluten/

http://blog.primohealthcoach.com/blog/bid/74158/Hidden-Sources-Of-Gluten

http://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf

7-page pdf

----------------------------

Buying bulk can be a problem as the bins are often all filled in one big back room and wheat flour can be flying around.

Same with gluten free pizza (where that may be on the menu) . . . it's not gluten-free if wheat flour is flying around the kitchen.
-

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dyna3495
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YES YES YES, and cutting out all sugar. Felt amazing results within 3 days. If you can get through the first day you will notice improvement upon waking up in the morning!
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Keebler
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-
Really a grass, remember the dark dense rices.

Black Rice, Red Rice, Wild Rice are all fabulous complex sources of excellent nutrients and antioxidants. Most have fairly high protein ratios which help with glycemic balance.

And, with these very dense rices, it takes just about 1/4 cup to round out a plate full of veggies and a good protein. Not talking about making rice even a side dish but a mini-side dish.

By adding a dense rice to my veggies, my meals last far longer. Small to medium portions of dark dense rice has a wonderful glycemic index, too, because of slow absorption to carry me through for hours where as just veggies seems to drop me sooner.

Wild Rice is lighter and takes longer to cook than red or black rices. It's good to rotate and not eat the same thing every day.

Red Rices have many varieties.

Black Rices also have a few different varieties, such as Thai - not sure if that is the same as the one I like from Lotus Foods:

Chinese Forbidden Black Rice

As with anything we consume, be sure of the source: where it's grown; how it's grown; how it is prepared for shipping; how it's stored; etc.
-

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Keebler
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-
GARDEN HERBS are the real saviors for any good food plan.

Also get to know ALL the veggies that are available and rotate. Farmers' Markets are fabulous places to learn more. Call the produce manager of your local veggie market and schedule a session with them.

Learn how to cook various ethnic dishes from around the globe, just making key adjustments.

It's all about flavor from HERBS & SPICES.

Garden Herbs are usually locally grown.

Especially with spices, be sure of the source: where it's grown; how it's grown; how it is prepared for shipping; how it's stored; the DATE. Old spices usually loose their effect.

Some Turmeric has been found to contain lead so, it's really important to do the homework on spices.

One good site:

http://www.mountainroseherbs.com/index2.html

Mountain Rose Herbs
-

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jlf2012
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I've been pretty much gluten free for a year (even before I knew I had lyme). I notice that I am more "regular" being gluten free and my stomach doesn't bloat. It mostly helps me with stomach issues I suppose. But a lot of people say the gut is where it all begins. I'm also dairy free except yogurt. I cheat on both occasionally. I had wheat crackers and regular pasta at my sister's the other day because I was so hungry and spending the night with her. The next day I had diarrhea and was really bloated and tired (more so than usual).
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Judie
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Nope. Didn't help me at all and did worse gluten free. I had problems with a lot of the substitute foods. I tried this and a rotation diet for 2 years with no improvement.

I don't have celiac or leaky gut or any of that stuff. Maybe that's why I do great with wheat and other gluten-rich foods.

What is your LLMD trying to help by going gluten free? Is it inflammation? Is it stomach problems? Weight loss?

I'd work with an ND with an emphasis on nutrition to find out what works best with your body type.

For me, low glycemic and eliminating beans (all beans including soy) helped the most for diet changes.

I do eat low carb when I can just because I don't want to gain weight, but sometimes I need to eat bread and crackers because it helps me not get sick when I take antibiotics. I take a massive amount of anti-fungals too so no candida issues so far.

Everyone is different and you need to find what works for you.

I know 2 people on keto diet and both lost 10 pounds in less than a month. I don't know how good it is to do this with Lyme. One went through the keto flu and with herxing that might not be so good.

Keto flu info on carb elimination:
http://elowcarbfoodlist.org/the-keto-flu-symptoms-and-relief/

I found this article that compares diets. Maybe the lists will help with ideas.

The Makers Diet vs. Primal Blueprint vs. Paleo

http://tasteofwonderland.wordpress.com/2012/02/10/the-makers-diet-vs-primal-blueprint-vs-paleo/

[ 09-10-2012, 05:01 PM: Message edited by: Judie ]

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sixgoofykids
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quote:
Originally posted by AuntyLynn:
There are lots of gluten free pastas on the market - brown rice, Jerusalem artichoke, spelt.

Spelt is not gluten free. [Frown]

--------------------
sixgoofykids.blogspot.com

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Lymetoo
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quote:
Originally posted by Judie:
Nope. Didn't help me at all and did worse gluten free. I had problems with a lot of the substitute foods.


If you just substituted foods containing wheat/gluten to non-gluten... then, yes, you will feel like it is not helping. You can't just start eating tons of GF cookies, breads, pasta, etc and feel well.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymeboy
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Yes, it helps. Also I had a gigantic reduction in gaseous emissions when I stopped. Lost a lot of weight and was a lot less sluggish. I probably will stay Gluten free.
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Judie
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"If you just substituted foods containing wheat/gluten to non-gluten... then, yes, you will feel like it is not helping. You can't just start eating tons of GF cookies, breads, pasta, etc and feel well."

I agree. That's not quite what I did. I worked with a list that the doc gave of such as what grains to eat that were gluten free (such as millet). It turns out I was allergic to millet and a lot of whole grains that are sometimes substituted in.

That's one of the few reasons gluten-free made me worse.

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Lymetoo
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Just go grain free. (as much as possible)

--------------------
--Lymetutu--
Opinions, not medical advice!

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erist210
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At this point I would challenge anyone (even perfectly "healthy" folks) to try just one month on a grain free and processed foods free diet (just whole foods, meat and veg and nuts) and see what happens.I think most people would be pleasantl surprised
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jlf2012
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I have friends trying to make me eat bread with lots of butter because they think I'm getting too thin. They don't understand that it literally makes me feel sick and I'm not doing it to try to be thin.
I agree with lymeboy that gluten causes a sluggish feeling for many. When I eat nuts, veggies, meat, some fruit I feel great but I NEED something more than that because I feel like I'm starving at times. I know ezekiel bread isn't gluten free but it's easier to digest so when I'm so, so hungry and craving carbs I toast that and put almond butter and blueberry preserves on it. Yummy.

Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Jlf2012, when I am not getting full from meats, eggs, fruits, veggies, nuts, nut butters, fats, chocolate, cheese (I do eat some dairy), etc., I know it's time for some more carbs. I'll eat a meal with purple potatoes, sweet potatoes, yellow potatoes, quinoa, or wild rice.

I really think sometimes my body needs more carbs than others. Most of the time I'm fine on "paleo" but other times I have to eat more like the "Primal Blueprint" that allows more carbs, just not grains.

I agree totally with the comment that you won't feel a difference if you just switch over to gluten free versions of the same foods.

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gigimac
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Judie, My doctor recommended gluten free because she said (she had lyme)it was very helpful for her as well as several other patients of hers.

I think I had a celiac test done and it was negative. I am willing to give it a try though and I am trying to fine tune my diet.

I noticed there was a can of gluten free spaghetti sauce at the store. Do you have to worry about gluten in stuff like that too? I wouldn't have thought spaghetti sauce would have gluten in it!

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Judie
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Hi gigimac,

It's definitely worth trying the diet. Some people do get relief from going gluten free. For me, it just wasn't the miracle that some people get from it.

With two years of doing rotation diets, there were time when I was grain free. Again, it didn't make a difference for my health.

Everyone is different though. That's why working with an ND who specializes in nutrition helped me get on the best diet for my body.

Good luck! I don't think there's a "one size fits" all when it comes to diet. Some diets do work better for some than others.

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