Questioning the gluten free diet

I have posted about this lots of times. I am seriously questioning the necessity of a fully gluten free diet for myself to heal lyme. It just does not resonate with me!
I understand the idea is that gluten causes inflammation and inflammation keeps people from healing.
My lyme is/has been mostly neuro lyme , no joint issues. I have been mostly GF for a number of months because I really want to heal from this. But it is starting to feel like my diet is just terrible as a result.
I have talked about this a lot on here. I am aware of all the research. I know wheat is often sprayed with chemicals and GMO's etcerta.
But I am talking about eating a healthy whole foods organic diet- which I did pre lyme- including gluten. Maybe not as much gluten as I used to, but a normal amt of it.
Because in place of it I am eating these GF breads and GF what nots - and corn tortillas instead of wheat, etcetera. And it just feels like this cannot be healthier than the good organic whole foods diet I used to have.

I feel like lyme is so nuts that it has caused me to not be able to use my intuition for healing. So if my intuition is telling me some gluten is fine for me, my fear and the council of my dr is telling me avoid all gluten. So I have really been trying. but I feel like my diet has worsened considerably since going GF.

So how can I decide? Can I just start adding some gluten back in and will I just know if it makes me worse or not?

My dr said dairy is fine- I do plenty of dairy. Yet some people say dairy is absolutely bad for a lyme diet- and very inflammatory. Ugh.
I just want to be able to eat what feels like normal to me. I am not talking about eating a bad diet- just a balanced whole foods diet that included wheat as part of it.
So how do I know what to do? I don't have joint pain or physical inflammation as part of my lyme- except for I guess inflammation in my ears. Mostly my symptoms are anxiety fatigue and ears. Used to be eyes too.

Right now my symptoms aren't even that bad.
Anyway, when I start the misty meadows herbal protocol next week I believe there are a lot of anti inflammatory herbs in there.
So is it really so bad to eat some gluten? It is putting such a damper on my experience of both eating and cooking for my family.
Really, can some barley soup be bad for me??!

I miss gluten.
But, my health is of course the most important thing. This is why I have been GF about 6 months.

What I am really trying to understand is, do I need to be actually scared of it? I say scared because part of my lyme when it acts up is the anxiety. So I have a fear that if I eat a piece of bread or bowl of pasta that my anxiety attacks will kick in! And they are so awful that it has kept me away from gluten.
But like. I just made a pot of quinoa pasta and it looked So gross I had to thro it away. So I just want to cook and eat a little regular wheat pasta. Is that really so bad? the explanation of it being inflammatory just doesn't feel clear or resonate enough with me. I ask this all the time on here- sorry- but are any others of you still healing up and still eating some gluten?
I have always had a good diet my whole life- I eat lots of organic and have always had a good instinct about what my body needs to be nourished.
Now on this GF diet, I feel like I am not able to listen to my instinct, and my body does not feel as well nourished as it did before.

My neuro Lyme is connected to gluten, higher carbs and sugar. I can feel it when I've overdone it w/ food. I'm GF and have been a long time now, before realizing my Lyme connection. I do have some joint pain but it's mostly mental fog I have a huge issue with.

I think it's possible to keep whole foods, including wheat, in the diet. I really think this is a personal symptom you have or don't have. But I wouldn't give up the GF diet without a real, 200% committed attempt to see if it works. And by that I mean 6 months. That's how long it took me to really adjust. Even closer to a year. And I wouldn't do it because you miss certain foods.

I have been Gf for 6 months. I have had a few cheats but very few- under 10 in 6 months. I just ate a bowl of wheat pasta tonight after writing this post because I really wanted it.

I try all the GF substitutes and don't like them. I mean they are tolerable but feel way more processed and gross to me than some home made organic bread would.

the thing is, it is hard for me to tell if it makes my lyme worse or not. Because I am still changing around the medication I am on, and still assessing things as they change every day even while being GF.

I don't even know what I would expect to feel when I eat gluten. Is it a stomach thing? Or a flare up of lyme symptoms? If it is a stomach thing, I have never noticed gluten making my stomach bad. the abx sure do make my stomach bad.

So I am just going on what other people are saying about avoiding gluten. and I understand sometimes we have to do that- but it still doesn't quite resonate with me.

I think the gluten controversy is just that...a controversy. It seems many doctors think gluten contributes to *all* autoimmune issues and others think it's confined to issues such as Celiacs. And, yes, I've read the stuff about inflammation. I think much of these issues are related to the fact that many products made with gluten are processed foods and we all know those aren't good for anyone....Lyme or not.

Dairy seems to have a similar controversy re inflammation. My LLMD told me I didn't need to worry about either....and I think I know why: I eat organic whenever possible and my diet is pretty healthy overall which results in lower gluten intake. I definitely enjoyed a occasional splurge but significantly less so now that I'm dealing with Lyme.

In "The Lyme Disease Solution", Dr. Singleton has a little quiz that helps the reader identify whether or not he/she is dealing with inflammation. Even though I consume dairy on a daily basis, I "tested" very low for inflammation. I feel good "inside" when I consume dairy.....I couldn't make that claim after eating a chocolate chip cookie ;)

After reading "The Lyme Disease Solution" as well as Dr. Burrascano's "Diagnostic Hints and Treatment Guidelines", my take on the situation is that we need to avoid refined carbs and sugar more than anything. Dr. B basically said anything made with flour is a no-no. It's definitely clear that even complex carbs intake needs to be minimized only because carbs eventually turn into sugar.

I just received this "re-run" from Dr. Weil since I'm on his newsletter list and share the link for whatever it may be worth:

http://www.drweil.com/drw/u/QAA400728/Do-You-Need-a-GlutenFree-Diet.html

I really avoid carbs now that I'm dealing with Lyme but, I'd like a "treat" every now and again in the form of a "hearty" carb....like a piece of chunky, whole grain bread with some good ol' organic butter on it. (when I asked hubby to try to find a whole grain bread made without flour, he was directed to the gluten-free products....I did not find them tasty at all).

I read about Ezekiel bread in one or more of the Lyme books I've read and will eventually get around to buying some:

http://www.foodforlife.com/about_us/ezekiel-49

If you take a peek at the link, the company also makes pasta that is made completely from sprouted grains. The "whole wheat" pasta sold in grocery stores is usually made with whole wheat *flour*. IMHO, it seems to be more important to avoid the flour vs. the wheat.

Just my two cents.... (and my apologies if this post is a bit all over the place...it's been a long week :)

Post Edited (cd3764) : 12/5/2014 8:28:16 PM (GMT-7)

I can't disagree with your frustration—I think each body is so different and there are so many contributing factors to our health AND our illness. I've had 4 food sensitivity tests done over the past 6 yrs. They have all shown off-the-charts gluten levels even when I wasn't eating gluten. And I can't tell a huge difference when I eat gluten. But I can tell a HUGE difference when I eat a lot of carbs—especially simple carbs, breads, pasta and the like. HUGE difference. So, while my ND was really going after me for my gluten levels, I decided to focus mainly on not eating any carbs other than veggies. It's easier, healthier, and accomplishes the same gluten-free goal.

I think you stated the key issue:

"Because in place of it I am eating these GF breads and GF what nots - and corn tortillas instead of wheat, etcetera. And it just feels like this cannot be healthier than the good organic whole foods diet I used to have."

The "gluten-free" foods are generally processed. So, unless you're making your own foods with "gluten-free" grains or a home-made mix of special flours (you can find recipes all over the web) you're eating processed food. And that is going to cause problems. I have also read that many of the gluten substitutes in stuff you buy that is pre-made (that is basically processed) can be worse for you than the gluten. Something has to serve as a protein binder and you can be as sensitive to whatever is used.

I will say that cutting bread and pasta out of my diet is one of the most difficult things about my life right now. Especially this time of year. ;)

-p

It was nice for me to read the posts about Ezekiel bread being good - it gives me motivation to find some! (that *is* what I sent hubby out for lol).

Food for Life does offer some gluten-free products but, as KB and Pirouette have noted, they are more processed. They often contain rice....which, even if organic, could be at risk of contamination with arsenic.

http://consumerreports.org/cro/magazine/2012/11/arsenic-in-your-food/index.htm

Another gluten alternative is corn - most of which is GM in the US. I occasionally eat organic (non-GMO) tortilla chips with guacamole....that's as "carby" as I get right now :)

Thanks to jellyboon for the link to the DeBoles site! I can't wait to try that pasta!

cd—
mmm….chips and guac. Now THAT would be a nice Christmas gift. ;)

Great article, thanks for posting! Pretty scary stuff. I can't imagine what kids these days are going to encounter later in life with all the crap they are being fed. As if being a parent wasn't difficult enough.

Awhile back, I was having such difficulty with eating so I started drinking this awesome food powder that was GMO-free, organic, had tons of enzymes and probiotics and good stuff. And didn't taste horrible. Several weeks later, I noticed that my hair loss (assumed to be due to the thyroid issues) got so so so much worse. LLMD and I could not figure it out. Doubled my thyroid meds and—nuthin.

Then, I happened to stumble into some info in an amazon.com review of the food powder that it had recently been reported that the brown rice was sourced from China and associated with "heavy metals" areas. BAM!!! POW!!! SWACKK!!! talk about getting slapped in the face with the obvious. Once I stopped eating it, the hairloss went back to it's previous state.

Also… just wanted to mention that if you can do breads and pasta but still want gluten-free, that you should really make your own—relatively inexpensive bread makers do all the work these days and pasta is a snap to make… nothing better than fresh pasta. And that way you can control what goes in it. And there are brilliant and generous people who have shared pretty good recipes all over the web so all the hard work in figuring out what "works" has already been done for you!

Boy, I sure do miss toast. :(

-p

Post Edited (Pirouette) : 12/5/2014 8:55:44 PM (GMT-7)

astroman—
You beat me to it! There are absolutely celiac sufferers, gluten allergies and gluten sensitivities. We've had that very discussion before as the subject of gluten comes up often. I do think, though, that everyone eats a varied amount of gluten. Some people normally eat gluten (in one form or another—just look up all the foods gluten is put in—and they are all processed unless you're wheat from the stalk ;) and others eat grains once a week. So, the need for eliminating gluten can sometimes be relative—the more you're eating, the more likely you are to develop a sensitivity.

The culprit is "new" grains, and most grains grown in this country are GMO unless specifically indicated as non-GMO. AND, I've read multiple accounts questioning the truth in those labels, too. We may never really know what we're eating. With the way that pure crops are so easily and uncontrollably contaminated by GMO crops, it's almost inevitable that the vast majority of the food supply will eventually be contaminated throughout the world. It's scary because there are minerals and other nutrients we need from grains.

Gluten is getting a lot of the attention lately, but I strongly suspect there is more going on with these GMO foods to be concerned about. Only time will tell.

But—
I did want to suggest that healing a leaky gut is much, much harder than just simply not eating gluten and sugar. I've been trying for the past 6 yrs and my tests still show "sensitivities" to every food I eat, indicating leaky gut. I've implemented several "gut healing" and immune system building protocols, supplements, elimination diets… and I've been on strong antifungals for almost a year now - and I am still showing leaky gut.

I fall into the "sensitive" category—I no longer have daily GI trouble like I used to when my leaky gut sx were the worst. In fact, I can eat gluten and sugar and grains without feeling any immediate reaction (sporadically, not with every meal) but my leaky gut is still not healed. I showed off-the-charts levels of antibodies to gluten a year after I'd stopped eating it…

And you're right—the key to us lymees is that 70% of our immune system lives within our guts. If our GI is struggling and compromised, so is our immune system and the lyme & co is much tougher to beat.

And—I wouldn't rely on the saliva test for much but entertainment. I've read several accounts that debunk it as an effective diagnostic tool.

-p

Gluten consumption has been connected with neurological disorders as well as gut, joint, skin, thyroid and autoimmune conditions.

See theglutenfile.com for more info.

Lyme is also known to trigger the onset of genetic gluten intolerance (Celiac, Gluten Sensitivity).

Gluten is addictive - it can act in the brain similar to an opiate, especially in those who are genetically prone to this and/or have leaky gut (which most with Lyme do).

Also, if you are eating gluten free processed substitute products, you are eating junk. Make your own. E.g., Make spaghetti by using spaghetti squash or zucchini noodles as the pasta. Yes, I know your taste buds are used to the gluten version (mine were too - I was a serious pasta lover before going gluten-free), so get adventurous and explore healthy alternatives. It can be fun to try new "veggie" pasta ideas.

Instead of bread, use a leaf of lettuce, or a homemade organic stoneground corn or sorghum tortilla.

Wash all non-gluten grains & dried beans before use, as they're often cross-contaminated with gluten while in storage or transport.

Use coconut, nut, or bean flours to make pancakes, cookies, etc. There are recipes all over the Internet for this stuff - here are a couple links to get you started:

paleofood.com
thecoconutmama.com/2014/01/coconut-flour-recipes/

I have no financial connections with any website links in this post.

The moral of the story is: Consume gluten at your own risk.

Pirouette-

I also used Cal-Mag Butyrate for leaky gut.

Pirouette-

Yes, Bentonite clay is good for leaky gut. I got some overpriced brand from a chiro at the time. It had other stuff in it too.

Goggle, you'll see it.

But I don't know the controversy in its use while having lyme.

I didnt know I had lyme back then. But I knew I had leaky gut.

This is one of the better threads I've read on here in a while. Very interesting! I have been completely gluten free and dairy free for I believe 4 years and 3 years respectively. It was actually very easy for me, mostly because it's not even a choice for me to eat gluten or dairy, the results are absolutely terrifying. Wouldn't wish it on my enemy (if I had any). Once I figured out that I was gluten intolerant, I only "cheated" once with some "gluten-aid" digestive enzymes and nope, that did not work! Won't be trying that again! Also didn't take the time to read a label once and ate a product with wheat in it, won't make that mistake again either!

That's an interesting discussion about the processed and refined gluten free products. I have never felt great eating those and now it makes sense. I've found it much easier to find products that are naturally gluten free (vegetables, tofu, etc.) instead of the knock-off substitutes. A whole bunch of weird stuff in there.

And I'm sorry but yes there is such a thing as gluten sensitivity and gluten intolerance. Not just "normal" and Celiac. That's absolutely asinine.

Ok, so I'm still a little shaky about the best lyme diet. I know there is no one correct answer but I'm having trouble deciphering everything. For me it definitely includes no gluten, no dairy, no alcohol, no sugar (but apparently fruit is ok? I love fruit), I hear a lot of people say no grains at all but now this thread has some new information concerning that topic. Caffeine yes/no? Red meat? Is there a thread out there that goes more in depth about best diets? I would really like to know what I should be doing better.

Well, I can say that I healed the first time around without being either gluten free or dairy free - but I was using only goat milk & goat milk products that I made. Although now, because of dealing with Lyme and Addison's, my doc wants me "mostly gluten free" - her words.

I can't have sugar as it can start severe intestinal cramps for me that can last for days. So no sense in me weighing in on that one.

I actually feel like I'm dealing with more inflammation this time around - feet, knees, hands elbows swelling - with being gluten free & dairy free, than I did last time when I wasn't gluten or dairy free.

It's still up to the individual and how well their body tolerates it. I fully believe that some don't have to be gluten free, or dairy free - depending on exactly what they are eating for gluten or dairy.

For anyone that is interested in a good pasta though, I've found Tinkyada pasta (made from brown rice in a dedicated facility) to hold up incredibly well! I've used it in casseroles and have cooked up a bunch for a side dish, then used the left overs in something else later and I was very impressed with the way they held up.