gluten free question

No idea what the answer is, but I can totally relate to this...

I agree with Pirouette - it depends on what your level of sensitivity is. I'm going through an elimination diet & testing of foods now, so I feel your pain - a little too well!!! LOL!

I also agree though that you may need to speak with your LL doc about craving breads still - this indicates a Candida issue for many.

I cheat all the time, have pizza every few weeks, eat ice cream on occasion and some baked goods that I make once in awhile.

I am seeing improvements in my treatment so I guess the cheating isn't hurting anything. Or maybe I won't know till I have more blood work.


In watching the gluten summit a few months back, I learned that you can have a gluten intolerance but it doesn't have to show up in the gut. It could come out as depression, neuropathy or even dementia. I guess if we all read the book Grain Brain, none of us would want to consume it.

I thought part of the reason for not eating it, for the people that aren't sensitive to it, is the fact it causes inflammation in the body which we need to eliminate as much as possible.

stay out of gluten. point.

if you want a pizza slice, you can make from patatos.


Girlie, finally i see you have diagnostic. at least you know it. it is not my case...i am thinking to send my blood test to IgeneX. how much you ve paid?

Hello Unlucky77....

i see you did the test at Infectolab in Germany. can you give me more details on it please?

write me at burnoutfree yahoo.com.

Gluten is a tough topic. Due to my GI problems I've done a lot of reading so I'll summarize what I've learned but you should also do your own research to find out what is best for you. I've read that unless you are also having GI or other symptoms that might suggest a gluten sensitivity, you shouldn't go on a "gluten-free" diet.

Eliminating gluten is tougher than it seems. It's put in ALL kinds of processed foods (e.g. soy sauce). The trouble with "gluten-free" foods is that the gluten is a protein—a "binder" and it is usually replaced with other items that are not that healthy for you. I've read over and over that the best way to go gluten-free is to eliminate all processed foods. ALL of them. If that doesn't bring about change, then you eliminate the major gluten players (wheat, rye, etc). And if that isn't enough you eliminate all grains.

But this means you're depleting your body of some essential nutrients and minerals that need to be replaced. And once your body has recovered (which could take quite awhile) you should slowly reintroduce whole, good grains but no more processed foods. Many people who have a gluten problem have had success going through this elimination process and then reintroducing only the foods they make themselves using specific types of grains (non-GMO, and sources outside the U.S. but I'm not at this stage so can't speak to it specifically). But one thing I know it is a life-altering process.

Both of my naturopaths have told me that food antibodies (likely due to leaky gut syndrome, which is common in patients who have food sensitivities/allergies) can stay in your body more than 6 months. I stopped eating grains altogether last January. I had food allergy tests done in July and among other things I had eliminated gluten antibody levels were off the charts. I had consumed maybe 1 small tortilla per month in that time period, so that goes to show you how little gluten it takes to cause such problems… and/or the levels before any elimination were astronomical.

Wheat Belly is a great resource. Wheat or other grains are not necessarily fundamentally bad or unhealthy for you—just the opposite. But unfortunately, there has been a huge change in the composition of grains used in foods that most people consume nowadays. The grain is so over processed the body doesn't understand how to digest it anymore.

So, the best approach is to first find out if you have a gluten sensitivity or allergy with testing. If you don't, the experts say you really shouldn't eat "gluten-free" foods and should absolutely stop eating processed foods. period. And eat the good, whole, organic, non-GMO grains in moderation. It is a very difficult challenge.

Post Edited (Pirouette) : 8/3/2014 9:53:16 AM (GMT-6)

hi
Well the night I posted this I ended up eating the gluten. I didn't eat bread I ate battered fish. it was delicious and so satisfying.
then, for the past two days ( including right now) I have been having a lot of dizziness. Oh man it sucks. I have not had dizziness form lyme in months prior. I had been feeling so much better and now I feel badly again. I is so tough with lyme because so many of the symptoms are mental or in the brain- so sometimes it is hard to tell what is lyme and what is other things.

Anyway I really feel worse since eating it and it wasn't even a huge amount. I hope so much that I have not set myself back too far! I have gotten so much better in the last few months. I had started to do things I hadn't done in a while and was really seeing a possible ending point to this.
Now it is discouraging to feel worse at this stage in treatment.

my doctor said dairy is not a problem with lyme- he said I did not need to even cut down on dairy, just cut out (as much as possible) sugar and all the way out gluten.

I apologize if I'm a bit of a broken record about this subject but your immune system is so important to a successful lyme treatment and it took me a long time to link important things together about GI & immune system—hoping I can help others get there a little faster.

Traveler— Good point about the elimination rotation approach. I forgot about that—I could never do it because it takes too much brain power and preparation for me. Like you said—it is soooo difficult to function and feed yourself in the most basic sense when you're sick (plus, I live alone). So I'm impressed that you can do it.

The other thing that you may have tackled but I never could—is that from what I've read and naturopaths have told me, your body could take days to react to something you've eaten. And that is just too confusing for me. Maybe if you're targeting one issue, like gluten sensitivity it might be clearer. But my first food allergy test I took 4 yrs ago was really bad—high levels of antibodies to 4 different types of grains, dairy, and several other foods like almonds, strawberries, fish, and other foods I typically ate. I couldn't manage the rotation approach so I just tried to cut everything out. But...

I was a vegetarian so that left legumes, veggies to eat. Over and over and over again I failed at that diet. I was just too busy (at the time I was working 80 hr wks, traveling) and was in complete denial about how sick I really was. I was having financial troubles so was mono-focused on working and pulling in money, etc. And to be truthful, I just didn't have the respect I should have for how interdependent my immune system and GI health were. At this point, the lyme infection started growing, I think.

I had a severe case of leaky gut so the mucosal lining of my intestines had been compromised and toxins from anything I ate, especially the pro-inflammatory foods (gluten, sugar) leaked through it and into the blood stream causing inflammation and nasty symptoms. This caused further damage to my immune system and eventually it was overwhelmed by viruses, bacteria, and infections and the more damage I did to my GI and immune system the sicker and less functioning I became and the less I could do for myself or understand how much I needed to help myself and get help. It was a scary downward spiral.

Since 1) finding an LLMD I love and trust and 2) committing to understanding more and more about the context of these lyme & co infections and everything else going on in my body 3) treating the viral load... I have had a much better chance at sticking with the elimination diet and experiencing a VAST change in my GI health. And recently, my LLMD agreed to finally start the lyme & co treatment. Eventually, I hope to be where you are in the rotation diet so that I can get back to a little more normal diet. I struggle so much with no appetite and low desire/energy to force myself to eat a very limited diet… If it weren't for the food powder I've been consuming, I would be in a scary place—this is a raw, organic, non-GMO high protein food powder that also has natural enzymes and probiotics. I've been drinking it for bkfst and dinner. I think it saved my life. BUT—I just found out it contains high levels of metals (due to the brown rice it gets from China) so I need to find a replacement, which I don't think exists.

I will also add that I had INSANE cravings for toast. INSANE. And it took 2 months of high doses of antifungals to treat my extreme yeast/fungal overgrowth that was clearly causing the cravings. Now, it is very easy to stick to the elimination diet. I have no more cravings.

Anyway, I've veered off topic a bit but to your point, yes, the eliminate rotation is a great, cheaper approach (the food allergy tests can run up to $400) to finding your sweet spot food diet.

I guess low vs. high protein is controversial. Someone will probably correct me if I'm wrong but from what my LLMD tells me, a balanced diet approach to amino acids is important as you don't really know which amino acid the same that the infection thrives on, too. And meat is recommended as long as it is organic, grass-fed, etc.. Plus, lyme has a tendency to cause muscle atrophy so protein is important.

Alternatively (this is a main Klinghardt treatment approach), if you are already highly acidic or have high levels of ammonia, you shouldn't eat high levels of L-arginine (found in grains and meat). Research shows that ammonia + arginine + manganese = nitric oxide, which could lead to brain swelling and other problems.

My ammonia levels are ok and I decided, due to my blood sugar issues and yeast/fungal issues it was important to cut carbs and include more protein. And I try to balance that with taking L-lysine. But I think it's still something to keep looking into because this isn't something I know much about.

-p

Can't disagree with you Mike—maybe it's best for lyme patients to be gluten-free… I was kind of tip-toeing around the "gluten free" foods that are so faddish now and are really just as unhealthy. Many people gravitate towards those foods thinking they will help them lose weight without having any basis for a sensitivity to gluten or understanding any of the issues with gluten and/or those foods with it or substituting for it. It's pretty confusing.

I think there are a couple reasons that gluten is all of a sudden such a problem: 1) thanks to the FDA and many other misinformed sources… we've been taught for the past 4-5 decades to load our diets with carbs and grains—regardless of the types (simple vs complex, Wonder Bread vs whole grain) with a HUGE imbalance to veggies and protein; 2) then came the hyper processing of just about everything and what's left is barely even a derivative of grain at all. My parents and grandparents and generations before them didn't have problems with eating gluten. It's a recent phenomenon.

And I don't really understand this real well but for healthy people (I know soooo many people who don't have negative reactions to foods) who can eat a well-balanced diet and do so in moderation, get good exercise, and live relatively stress-free this whole conversation may not apply. I would also guess that that will change in the next generation—there are just too few pure grain supplies left, unless you can grow small crops of your own (growing them in an isolated bubble, too!) I have read about gluten-sensitive people who have had success making their own food with these original sources of grains.

I've come across many statements by health and food officianados that gluten, as a raw component of pure grains is not unhealthy for you. What is currently in most grains and processed food IS, however. But I don't think celiacs fall into this category—they do not tolerate gluten, period. (and there's a whole other discussion about how celiac is tough to diagnose, testing is rather inaccurate, and many people are really gluten-sensitive not celiac, etc…)

Maybe it is better for lyme patients and others with joint issues, autism, skin problems, etc... to broadly go gluten-free. I am relatively grain-free at this point out of necessity… But if after my treatment I can get to the point where I can do more baking, etc and can get my hands on original sources of grains—I will attempt to reintroduce grains into my diet.

-p

GMO foods is a SERIOUS concern—worldwide. I shudder to think what our food sources will look like in 10 yrs. And corn is one of the highest subsidized businesses and it's in EVERYTHING, as is soy. It's a mess. it's all a mess.

-p

I envy those people who have (and can attend to) veggie gardens. It is a luxury to me. One of these days…

-p