-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- Yes, indeed, there are many symnptoms of gluten intolerance that many disregard. IMO, everyone treating lyme should avoid gluten. It's that important, just in case.
See "Modern Wheat is a perfect poison" in this set:
Vanguard Neurologist - A Blog by David Perlmutter, MD
New Study Links Gluten Sensitivity to Brain Failure (2007)
Excerpts:
. . . . inflammatory chemicals called cytokines are created . . .
. . . elevated levels of cytokines are seen in such devastating conditions as Alzheimer�s disease, Parkinson�s disease, multiple sclerosis, and even autism.
Essentially, the brain does not like inflammation and responds quite negatively to the presence of cytokines. . . .
- Full article and book recommendation at link above.
[poster's note: elevated cytokines also occur with lyme & other infections. So trying to keep that all under control takes a multifaceted approach.]
-----------------
Gluten (in wheat, rye, barley, spelt, kamut and added to "Mexican" or "Spanish" rice and other flavor packets - and in many processed foods even broths in the form or barley malt);
HIDDEN SOURCES OF GLUTEN (each link has detail the others may not):
7-page pdf -
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poppy
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posted
Most of those symptoms overlap with lyme. And I'm already eliminating so many foods, that it doesn't leave much. Don't think we are ALL gluten intolerant.
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posted
This is interesting because I mentioned gluten intolerance (I've been tested for celiac and the panel came back negative) to my doc. He told me that most of his Lyme patients do *not* have a gluten issue.
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nefferdun
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posted
I agree I don't believe we are all gluten intolerant. I am also off so many foods that eliminating gluten and the little bit of dairy I have would make my diet so bland it would hardly be worth eating.
It seems more logical to just get tested rather than throw a blanket over everyone saying we all have it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
The bigger question is what does gmo grains do to the body. Whether you are gluten intolerant or not, all wheat in the US is dwarf wheat and it is gmo.
GMO grains cause inflammation in the body. Lyme or not, you should minimize your exposure to this type of food. It is just a good health decision.
That doesn't mean you can't eat out once and a while and eat it, but it should never be a staple in your diet.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I'm not trying to get into a gluten free or not debate, but I have a rhetorical question to pose. If everyone in the U.S. eats the same grains, why do most NOT have inflammation?
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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Catgirl
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posted
I also feel lyme patients should avoid gluten, and the GMO point is a valid one. If you eat out in a restaurant you're getting it.
Since lyme attacks the gut, it makes sense for me to stop something that can causes inflammation.
That said, it just comes down to choice. But then there's consequence. If people haven't knocked their lyme into remission, this maybe something to seriously consider.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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posted
Most people don't get their blood tested to see if they have internal inflammation. Not one person I know has even had a CRP test done (inflammation). And docs usually don't run the test unless someone asks. Had I not asked to get a CRP done, I never would have known I had lyme.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I agree, Catgirl. My high CRP is what led me to a LLMD. But I have symptoms of inflammation: pain. Most people do not.
I suppose it's possible to have inflammation without pain, but I would think discomfort would arise at some point when you continue to eat the same way. Therefore, if everyone in the U.S. eats basically the same thing, then we should all be in arthritic-type pain. Only a few of us actually are, though.
And just in case anyone thinks I'm in favor of eating gluten, I'm trying to limit my own consumption. I just wanted to point out what my doc said. He wants me off white flour but he said whole grain pasta is okay.
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- 1. Doctors and tests can be wrong.
Most doctors are not well educated in the matter.
I had many misdiagnoses about celiac - even some tests said negative - UNITL the genetic test that did confirm I indeed had celiac.
Several doctors called that with great error before a smart doctor caught it and insisted on a genetic blood workup.
2. Even if not due to celiac, gluten can cause all kinds of symptoms in many and IF there is a chance - any chance - that they might be further tipping our boat it might just be the help needed to see our way through the jungle.
3. No one need suffer for lack of flavor, texture or hundreds of fabulous food choices when avoiding gluten. There are many options for fabulous favor and variety.
4. Just limiting gluten may not have any effect whatsoever for some. Even a trace - (yes, I know) even a trace - can cause problems with swelling in the brain for up to six months after ingestion.
5. It can take many months to see any positive results of gluten avoidance but, if it the body may benefit, with something like lyme in the picture, benefits may not be evident but still - could be the tipping point toward our chance of a good remission.
6. Not all who are gluten sensitive have stomach troubles, or pain. Some have other symptoms. Gluten can cause brain damage in some sneaky ways.
7. I'm not trying to scare or bully anyone but this is a very complex issue and most doctors really are not up to speed on it.
It cannot hurt, the inconvenience of such a diet change is minor in comparison to the possible rewards.
Above all, flavor and fabulous foods are still plentiful without gluten. Really.
For my part, even though I have celiac so could expect benefits, I can tell you that - in my case - I've often had seizures up to 3 days after a surprise ingestion of gluten.
This pattern was so pronounced only when I started really questioning foods I'd eaten at pot-lucks. Three days, really. But I felt my head swell for months after that.
People tended to forget ingredients. Since stopping all foods others make, improvements and avoidance of that source of brain damage has been a nice help. Am I all well without it? No. Undertreated lyme is still an issue for me.
But I do khow that I'd probably not still be alive were I to have continued gluten.
Mood is far better balanced. Pain is less (still, it's a bear but much less). Inflammation is less (still an issue but far less).
Seizures are far less frequent and less violent when they do occur. While fatigue is still strong (and that's understandable), it's far less intense off of gluten.
No more trips to the ER with stomach emergencies. Even without the stomach stuff, though, I had dozens of other insults that lifted when gluten was banished.
Blood glucose levels better, too. -
[ 01-31-2013, 01:58 AM: Message edited by: Keebler ]
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Catgirl
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posted
I had inflammation without pain. I think things like arthritis creep up slowly because of inflammation, which gluten does cause. So maybe people who don't have pain, simply don't have signs of it yet (coming).
As people age they start to develop signs of "getting older" with small aches and pains. I think this is lyme. As lyme grows with time, it finally gets to a point where the host starts getting things like arthritis, knee, joint, shoulder pain, and fatigue.
Everything we eat has an effect on us. That said, I'm no saint. I cheat with a gluten free pizza every now and then. I know that it's probably made in the same oven as the regular pizzas, which means gluten exposure. I'm sure its genetically modified too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
The problems with inflammation show up eventually.
And I wasn't debating, just giving my opinion.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
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posted
- Not trying to win any debates but just know that most doctors are just not well educated in this matter and there is so much still to uncover.
I could have avoided so much torment had I known all this years, decades, earlier. I just want others to know that there may be some help just around the corner from this one change. -
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Catgirl
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Wow, Keebler! It amazes me what gluten can do. It's a shame grains have been modified in our country. Humans are slowly contaminating themselves and the planet and don't even have a clue (gluten, toxins, etc).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Unfortunately, there are those that feel making genetically modified food are going to help us feed the world.
The body doesn't recognize these foods and it reacts by causing chaos in the body. Keebler is right in saying that they are just finding out how much it impacts our health.
There are so many gluten free alternatives out there now that really taste good. One change can make a huge difference in your health.
Just google what diseases can come from inflammation in the body. Heart disease comes to mind as a big one.
You have your health until you don't. Being proactive is a good thing. It is about quality of life. Change is never easy, and staying healthy is work, but worthwhile.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
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How Long Does That Tiny Bit of Gluten Affect Your Body?
- by Donna Gates - Jul 24, 2012
Excerpts:
. . . It�s just one piece of cake, but how long will the inflammation affect your body? . . .
. . . Effects Last Longer Than You Think . . .
. . . studies show that the smallest amount of gluten�say a cracker the size of 1/8 of your thumb nail�will have a prolonged inflammatory effect in the body for up to 6 months after ingestion if you are gluten sensitive. (1) . . . . -
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poppy
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posted
OK, Keebler, you are hired. Please come and be my cook. My diet is pretty boring, even without avoiding gluten.
Two points: my CRP test was normal, even though I have lyme and muscle wasting and undoubted inflammation. Also, I don't think GM wheat is on the market. GM corn and soy definitely are. I am now mail ordering non-GM cornmeal because I love my cornbread (even though not on the low carb diet).
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Keebler
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posted
- Both below make very nice Gluten Free cornbread mixes. Just be careful to not eat these alone due to the high sugars. With protein and lots of good veggies and some good fat, a little of this can be a nice treat now and then.
Best to first study the manufacturer's site and then find the best prices at places like VitaCost.com -- many good local markets carry these brands.
Trader Joe's also has GF choices of their own.
I generally don't eat flours (my blood sugar does best to avoid flours of any kind) so have not checked on the GMO aspect of these, though.
Tinkyada - GF Pasta -
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Keebler
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posted
- Beter than the processed foods as above, though, use veggies as the main attraction. WHOLE RICES and such are much better for anyone's blood glucose stability.
WILD RICE, BLACK RICE, RED RICE - all really grasses and filled with excellent nutrients and antioxidants.
Red, Black and regular Quinoa (a seed - though some wonder about that particular gluten).
Millet (a seed)
Amaranth (not sure what category that is but it is delicious)
Buckwheat (really a legume)
As a WHOLE food ingredient (and sometimes a little bit of their flours), these can round out a menu.
It's most often the flavor of the seasonings that make all the difference.
Garden Herbs, Spices - with onions, shallots, scallions, garlic, fennel bulbs - will save the day and turn any recipe into a winner. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Kat1777: I'm not trying to get into a gluten free or not debate, but I have a rhetorical question to pose. If everyone in the U.S. eats the same grains, why do most NOT have inflammation?
- Who says they don't have inflammation? Many have all kinds of ailments they have no clue about.
All I know is that once I went totally gluten free, much of my body pain left. (nearly all)
Faithful is correct that GMO grains are the biggest problem. (GMO everything)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- A "must see" documentary link here: GMO Roulette:
posted
My inflammation was revealed because of signficant pain. Most people are not in the kind of pain I am. They could have inflammation, but I would say it's highly unlikely that they have it to any kind of significant degree. I can only speak from personal experience, but for me, inflammation was NOT a silent threat like, say, diabetes or high cholesterol. I was very symptomatic of it.
I expect if I continue to exhibit inflammation my doctor will do a gluten elimination trial, but for the time being I trust him in his assertion that most people do not have a gluten issue.
Genetic modification is a whole other tangent I don't have the experience or insight to go down, but I appreciate what the rest of you are sharing. Natural food stores are becoming my new best friend. Posts: 90 | From Pennsylvania | Registered: Oct 2012
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On the next Healthy Talk with Dr. Mike, Jeffrey M. Smith will discuss his blockbuster documentary film, Genetic Roulette: The Gamble of Our Lives and bestselling book on the health dangers of genetically modified organisms (GMOs).
His meticulous research documents how biotech companies continue to mislead legislators and safety officials to put the health of society at risk, and the environment in peril. Mr. Smith has counseled leaders from every continent and influenced the first state laws in the United States regulating GMOs.
Don't miss this critically important discussion with the world's leading GMO expert. Mr. Smith will outline why he believes GMO foods must urgently become our nation's top safety priority.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- Thanks, TuTu . . . for tomorrow's tune-in. -
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Keebler
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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poppy
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posted
I'm sorry, already have my limit on things to worry about. Not going to add wheat to the list.
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posted
Uh oh, faithful. I don't know. I'll check it later. Tried to sign in .. but...
I am on their email list but not a member.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
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posted
Unfortunately, unless it says organic, it's genetically modified. Even produce.
I haven't found a restaurant yet that serves GMO free or organic meat and produce (except in Berkeley, CA).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
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Topic: Newly discovered tie between gluten and Lyme
Also of note here is a post about how certain GF items in a deli may not be GF at all if they share equipment & the "air" with wheat. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Catgirl: Unfortunately, unless it says organic, it's genetically modified. Even produce.
I haven't found a restaurant yet that serves GMO free or organic meat and produce (except in Berkeley, CA).
- Yep. My health coach said, "Why is the GMO stuff called food when it's the organic produce that is the REAL FOOD! We should just label all the bad stuff "GMO!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- Sadly, so much is all about corporations, food "products" that have a shelf life of forever and profits to the moon.
Support local farmers & ranchers (and egg gatherers) - and strong fishermen and fisherwomen who brave actual oceans & bays to bring us back wild-caught fish -
- and local farmers' markets & cooperative memberships , organic delivery groups (if lucky enough to have that, if not, explore getting one going with the farmers and students).
Where organic certification is out of reach, there are still specific classifications that promote avoidance of the worst agri-chemicals.
"Transitional" is one. "Sustainable" may have various definitions but you can explore all area farmers to find out more about their practices. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I find this debate very interesting - as I have only recently been back on lymenet, after having been absent from for a few years.
I have in my time away - been convinced I have a big problem with gluten.
I even get sores in my mouth, along with gastric symptoms when I have eaten something with gluten...
I have had the blood test...it was negative
but my gastro. Dr. told me to avoid it if it makes me feel better.
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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momindeep
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posted
One of my daughter's doctors...when examining her blood uner her microscope can see by her cells appearance whether my daughter has ingested GMOs or not recently...so yes, GMO's alter your blood cells in a negative manner...if that is occuring and it is, what else is happening because of GMOs?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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DEFINITELY try the elimination.. go to www.celiac.com for a list of hidden gluten in foods.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
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posted
I have recently decided to cut back on gluten. As I've read above, cutting back might not be good enough. But anyway, thats what I am trying.
I bought some gluten free cereal, and it has a stale taste to me. Is that what gluten free cereals are suppose to taste like? I also bought some gluten free almond milk, and some chocolate milk. The choc milk is really good.
Actually as I am writing this, my daughter is reading an article about how unless you have celiac disease then you shouldn't go gluten free. It says that going gluten free, causes you to miss out on many nutrients that you need.
So I don't know what to do. As some of you know I am in remission for 4 months, but still have inflammation in my hands, knees and feet. Not much pain involved. The inflammation has improved over the last few months. So maybe Its not gluten at all. Any advice is appreciated.
Keebler
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posted
- Quote: (an article says) "going gluten free, causes you to miss out on many nutrients that you need." (end quote)
Likely comes from a food "industry" spokesperson or a doctor who never had a nutrtion class in their life -- and perpetuated by reporters who are also ignorant in this area.
False. Absolutely false.
Eating REAL food is where we get nutrients. REAL food (naturally gluten free) is abundant in nutrients.
Myth: GF foods are tasteless or taste bad. Some GF processed foods do, but that's mostly due to the processing and additives.
REAL food that is GF can be delicious. It's all about the ingredients, the food itself and then the garden herbs & spices used to enhance.
The trio of any good diet, Plants, Proteins & (most) Fats are naturally gluten free. That trio should make up 75-85 percent of our diet.
Taking place of wheat, barley, kamut and rye (the gluten-containing grains). . . you then have seeds, legumes and OTHER "grains" that are naturally gluten free, you have:
Amaranth
Buckwheat groats
Millet
Regular, Red, Black Quinoa
Brown, Red, Black and Wild Rices
Teff
Oats (when certified GF as they can be easily contaminated with wheat pieces in the mill). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Agree with Keeb .. eat healthy stuff, not GF cereal. If you do buy a GF bread, look for Canyon Bakehouse.. it is not a "white" bread.
Either go completely GF or forget it. Cutting back won't do much.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- You can do a similar search for any of the grand foods above. Then, you might be delighted by following up on a search for the nutrients & recipies for all kinds of legumes.
Buckwheat is technically a legume but it's used as a grain. Millet is a seed and Wild Rice is actually a grass. Starting with just a few great finds from a
NYT Recipes for Health: Black Rice and Red Lentil Salad
- by Martha Rose Shulman - January 24, 2012 -
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randibear
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posted
i ate some of my sister's cereal. she's a real health nut.
it had almond milk and some kind of stuff in it. it was the most disgusting stuff i have eaten. tasted like cardboard. i threw it out. i just couldn't stomach it.
she said it was whole foods natural something or other. i don't care if it was expensive, you can't eat it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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posted
- MOST packaged food "products" are not really food at all. They are products.
There are a few great exceptions such as
Mary's Gone Crackers - GF crackers
-----------------------------------------
"Sweet" herbs and spices & "savory" herbs and spices can really make your day.
As most here forgot about "breakfast foods" long ago being any different from foods for lunch or dinner, I still like to embrace the "sweet spices" before noon.
Cardamom is my favorite anytime of day, though it's especially nice in a "breakfast" grain.
CURRY will gracefully marry any categories of foods. Curries vary, so do explore.
Onions, Shallots, Leeks, Fennel, Mint, Garlic, Ginger are just the mainstay of plantsthat support us in many ways while also bringing us so much flavor - and nutrients.
And the good fats. It's good to also extend our reach to all the good oils from nuts and vegetables. Hazelnut oil and Avocado oil are tops in my book.
Coconut oil is great for sauteeing onions and the like.
As each oil has it's one "flashpoint" it's good to know that before cooking but most oils are best not cooked at all. Old oils can be toxic so be sure all oils are fresh. That's another whole set of fun searches.
START A NEW RELATIONSHIP with the produce staff of your health markets and all the vendors at your neighborhood farmers' markets. -
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Keebler
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posted
- To help with scouting out the few (yeah, few) packaged items that can be our real friends, consider:
. . . Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians.
Borrelia burgdorferi, the microbial agent often behind unexplained GI symptoms�along with numerous other pathogens also contained in tick saliva�influences health and vitality of the gastrointestinal tract from oral cavity to anus. . . . -
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nefferdun
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posted
I don't know if there is any value to this but supposedly Type A blood types do not have a problem with gluten. I am A-. My son is A+ and he tested negative for antibodies for celiac.
Type A are best suited to a vegetarian diet too, which I began about a year ago. I feel much better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
The best GF breads I've had thus far are from Julian's Bakery in CA. You can order them online. They carry many GF breads with WAY less ingredients than the GF breads at the store. High in protein too.. My favs are the paleo bread, carb zero #3, and purity bread. Pricey, but worth it for me. I love to toast them and top with coconut oil or coconut butter.
I do gluten free even though I don't notice a huge difference without it. Gluten causes inflammation for many and that alone makes me want to stay away from it. That and I have a lot of gut issues as it is.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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Topic: Newly discovered tie between gluten and Lyme -
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Catgirl
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posted
It's not just the gluten, it's the protein gliadin, and if you're eating wheat, you're getting it. It binds to opiate receptors in your brain and can stimulate appetite. It's why we feel so very satiated once we eat it.
Yet, people who eliminate gliadin get rid of swelling, IBS, acid reflux, diabetes, depression, etc (Dr. Davis, Wheat Belly). I actually think the reason they are getting rid of this though is due to eliminating gluten, and especially because it's genetically modified.
If it doesn't say organic folks, you're eating it, and if you're not getting any better, maybe this is why.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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