Gluten: GLUTEN is good or not good for cll ? - CLL Support

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tms99532 profile image
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GLUTEN is good or not good for cll ?

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tms99532 profile image
tms99532
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23 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi tms99532,

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Your question and your past postings are extremely brief, so it is challenging to understand why you are asking.

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Gluten can cause an allergic reaction in the colon for a small percentage of the world population see:

webmd.com/diet/news/2012022...

healthline.com/nutrition/gl...

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We also believe that CLL affects our immune system and may CLL patients have increased / exaggerated reactions to allergens, bug bites, and skin irritations.

So could CLL increase a gluten allergy? Possibly.

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You may need to experiment with trying a gluten free diet to see if any gastro symptoms are reduced.

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Len

LeoPa profile image
LeoPa

Gluten is absolutely bad for everything,not only CLL. Humans have zero need to consume it. Even if it does not hurt you,it won't help you either.

AussieNeil profile image
AussieNeilAdministrator in reply to LeoPa

Do you have a reference from a reputable source for your absolute statement? Gluten is present in most grains, so eliminating gluten from your diet makes it much more difficult to achieve a nutritious diet.

LeoPa profile image
LeoPa in reply to AussieNeil

The statement is a short summary of what I learned about gluten from multiple books. If I remember correctly this is one of them:

amazon.com/Gut-Inside-Story...

"With quirky charm, science star and medical doctor Giulia Enders explains the gut’s magic, answering questions like: What’s really up with gluten and lactose intolerance? How does the gut affect obesity? What's the connection between our microbiome and mental health? Why does acid reflux happen? In this revised edition of her beloved bestseller, Enders includes a new section on the brain-gut connection, and dives into groundbreaking discoveries of psychobiotics—microbes with psychological effects that can influence mental health conditions like depression and even stress."

BTW grains are unnecessary for a nutritious diet. That's a short summary too 🙂

AussieNeil profile image
AussieNeilAdministrator in reply to LeoPa

This is my concern. ... high-quality evidence supporting gluten avoidance for physical symptoms or diseases other than those specifically known to be caused by immune-mediated responses to gluten is neither robust nor convincing. In fact, gluten avoidance may be associated with adverse effects in patients without proven gluten-related diseases.

ncbi.nlm.nih.gov/pmc/articl...

Neil

LeoPa profile image
LeoPa in reply to AussieNeil

"may be associated with adverse effects" - that's code speak for "we have no proof but we want you to believe us nonetheless". I've never seen anything proving that gluten is in any way beneficial. It's a gut lining disruptor and a leaky gut causes a plethora of health issues. Another book explaining why:

images.app.goo.gl/dLV1vSmMW...

AussieNeil profile image
AussieNeilAdministrator in reply to LeoPa

I note that you ignored the lack of high quality evidence first mentioned. Per this Harvard School of Public Health article, Gluten: A Benefit or Harm to the Body?

hsph.harvard.edu/nutritions...

In a 2017 study of over 100,000 participants without celiac disease, researchers found no association between long-term dietary gluten consumption and heart disease risk. [1] In fact, the findings also suggested that non-celiac individuals who avoid gluten may increase their risk of heart disease, due to the potential for reduced consumption of whole grains.

* Many studies have linked whole grain consumption with improved health outcomes. For example, groups with the highest intakes of whole grains including wheat (2-3 servings daily) compared with groups eating the lowest amounts (less than 2 servings daily) were found to have significantly lower rates of heart disease and stroke, development of type 2 diabetes, and deaths from all causes. [2-5]

Gluten may also act as a prebiotic, feeding the “good” bacteria in our bodies.

What’s not great about gluten is that it can cause serious side effects in certain individuals. (My emphasis - corrected).

LeoPa profile image
LeoPa in reply to AussieNeil

I agree with Sofia. These kinds of studies are a nonsense and go against evolutionary logic. Once you keep digging you quickly expose how biased they are,due to special interests. These scientists are lost in the jungle and can't see the forest. For most of our evolutionary history we ate no glutens and were strong and athletic. No, we did not to die of heart disease and neither did we die prematurely unless in an accident or due to infectious diseases. It was only after the dawn of agriculture that humans began to eat seeds regularly. Our numbers multiplied after that but we became smaller weaker and sicker for it. Here is the whole story for those who wants to know about it: Denise Minger: Death by Food Pyramid.

SofiaDeo profile image
SofiaDeo in reply to LeoPa

Actually, there is some data out that wheat/einkorn ingestion is older than originally thought. The early wheat and grain species have a higher protein composition, and more diverse nutrient profile. It's the modern/hybridized stuff that has less protein, fiber, and more gluten/gliadin. There's a few studies that indicate the older, non hybridized, whole grains are in fact decent food sources. Our gut bacteria diversify on them, compared to modern processed stuff. It seems to me, that "processing" is the big problem, since fiber is removed. Even a plant based "veggie burger" isn't particularly healthy, compared to eating those same plants with their fiber intact. I think everyone is missing this. Fiber feeds our gut and keeps us/our microbiome healthier. I was recently reading that "fiber recommendations" have been upped, compared to recommendations from decades ago. Much like the cholesterol issue (where people thought the cholesterol ingested was the basic problem) , it looks to me like the bottom line is turning out to be more related to processing/fiber content of foods. Not whether they contain gluten, or not.

LeoPa profile image
LeoPa in reply to SofiaDeo

Yes,I've read about those studies but gluten is still a gut lining disruptor and not being sensitive to it does not mean the rest of stuff that can slip through a leaky gut can not be harmful. Fiber can be obtained from other sources and grains are an inferior source of nutrition. Better than famine but inferior still.

SofiaDeo profile image
SofiaDeo in reply to AussieNeil

I think we ultimately are in agreement, but the argument is around the word "gluten" and what "gluten free diet" mean. The Harvard article talks about the fact that many "gluten free" foods people are choosing when they say "I am going gluten free" are processed items. Not whole grains. Gliadin is not a probiotic, and is the major "problem" in gluten containing foods.

pubmed.ncbi.nlm.nih.gov/339...

Whole grains contain the prebiotics for our gut, but IMO many, many food products use "enriched white flour" which have the fiber, hence the prebiotics, stripped out. So even though they have gluten, they don't have prebiotic activity. Only whole grain products contain the prebiotics. And "enriching" this now nutritionally compromised flour doesn't mean any of those nutrients will be in an absorbable, bioavailable form. Much of the language around gluten free diets "having less nutrition" is based on people eating enriched versus non enriched. No one has really studied to see if and how much of this "enrichment" is actually absorbed across large populations, and if any health issues are due to lack of these nutrients.

IMO a lot of the argument around going "gluten free" should ideally be more along the lines of "I am going to eat less processed foods". Because it's the *processing* and stripping of the fiber that matters, not whether or not there happens to be some gluten, for those not having celiac disease. Although the modern wheat genotypes are showing a definite allergenic potential. Not to the point of celiac disease, but there are people who are sensitive to wheat. And eating a stripped, high gliadin white flour will bother them more than ingesting whole grains. So it's easier to just avoid wheat products, since it's difficult to know the source. And if these wheat products are replaced with unhealthy processed "gluten free" junk, then it's just replace one processed junk for a gluten free processed junk. And IMO it's the "processed" part that matters. If someone stops eating junky bread and switches to steel cut oats and vegetables, they may feel better and erroneously think it's because they went "gluten free".

AussieNeil profile image
AussieNeilAdministrator in reply to SofiaDeo

I agree with your reasoning.

AussieNeil profile image
AussieNeilAdministrator in reply to AussieNeil

LeoPa and SofiaDeo,

It appears that you both agree that the sentence by the authors of the first study I quoted from - PMC5866307; "In fact, gluten avoidance may be associated with adverse effects in patients without proven gluten-related diseases." is not supported by the reference they gave in that study. However the conclusion of reference 1 (see below) from the BMJ study Harvard Health article I subsequently referenced concludes;

Long term dietary intake of gluten was not associated with risk of coronary heart disease. However, the avoidance of gluten may result in reduced consumption of beneficial whole grains, which may affect cardiovascular risk. The promotion of gluten-free diets among people without celiac disease should not be encouraged.

SofiaDeo and I are in agreement that studies into gluten vs gluten free diets need to examine the effect of gluten in processed vs non processed diets, that gluten is not "absolutely bad for everything" and that whole grains may be beneficial.

LeoPa, I note that you like referencing books on health topics. Well written books contain references backing up the author's statements. If you could quote a specific reference rather than an entire book, then those interested can look at the source material and make up their own minds. As this discussion has shown, it's not unusual for authors to use references which do not support their words.

Neil

Ref 1. Lebwohl B, Cao Y, Zong G, Hu FB, Green PHR, Neugut AI, Rimm EB, Sampson L, Dougherty L, Giovannucci E, Willett WC, Sun Q, Chan AT. Long term gluten consumption in adults without celiac disease and risk of coronary heart disease: prospective cohort study. BMJ. 2017 May 2;357:j1892.

bmj.com/content/357/bmj.j1892

SofiaDeo profile image
SofiaDeo in reply to AussieNeil

Yes, the article IMO was somewhat misleading in that the article talked about gluten free foods, but referenced some thimgs comparing "processed gluten items" against "processed non gluten items". Whole grains have fiber and other nutrients, it's when one starts processing them that they aren't as healthy for us. The importance of fiber is relatively new, showing up when people started studying the gut biome in depth.

LeoPa profile image
LeoPa in reply to AussieNeil

Neil, I think that reading whole books is important. You can find studies to support just about any dietary claim depending from who is funding it and what vested interests are involved. For the layperson it is thus important that someone picks the studies apart and explains their results in a simplified easily digestable way. Including pointing out their weaknesses. So it's ultimately about who we trust on the topic and why do we trust him. Every claim that does not make evolutionary sense can be safely discarded IMO. Those who read NUTRITION AND PHYSICAL DEGENERATION by WESTON A. PRICE will appreciate the differences between races reg. nutrition. Masai warriors eat nothing plant based, Kitawans did not eat gluten just like Eskimos did not. And ever since they started (along with other crappy modern foods)they came to know what diseases of civilization are. Some northern European tribes ate whole grains for a long time but I still believe that gluten was bad even for them,though the benefits of eating these under the given circumstances outweighed the negatives. So it's a long story and reading this or that study isn't enough to get the whole picture.

Psalm4610 profile image
Psalm4610 in reply to AussieNeil

Thank you Neil for always being the voice of reason!! Non peer reviewed research is not valid in my opinion. I’m married to a PhD, thus know what I’m talking about. Show me empirical research / you ALWAYS do that Neil, which makes this board so trustworthy. The original poster of this question may not have posted much before and probably won’t again after this thread.

I oftentimes hesitate to post for that very reason. Who wants to see people spouting “interesting” books, not bonafied research? I’ve read Blue Zones, The China Study and related books, but I don’t insist or argue everyone else should adopt that. We are all on different journeys and at different places in our journey.

We are all fighting for our lives here- and Neil you always remember that. I thank you. DC in Texas

SofiaDeo profile image
SofiaDeo in reply to AussieNeil

Neil, I reject this statement as a conclusion. It wasn't in the conclusions of the authors. The initial "study" used to declare people were not ingesting appropriate nutrients was only 47 adults *with celiac disease*. Using a tiny group of diseased patients to make sweeping generalizations is not valid IMO. Plus they were using *processed* gluten free foods as their comparators in the "may have negative effects" statement! Stripped of fiber, etc like white flour processed products, except the "white flour" products have nutrients added back/are "enriched" while "gluten free" baked goods and pastas generally don't use fortified sources. Since the majority of our fiber and the other vitamins listed never came from bread/wheat products, IMO this statement is ridiculous. Humans didn't evolve on milk & processed cereals for breakfast, or on baked/snack goods. We used real foods. Our cereals were cooked whole grains, not some processed, sugared flake or fancy shape. Breads didn't have chemicals like conditioners, stabilizers, and preservatives. The original wheat, einkorn, seems to support gut health (only seeing animal studies, no human ones) as it has numerous nutrients plus less gluten compared to modern hybridized wheat. The "table" in that paper listing the supposedly negative effects of "gluten free" is a *suggested* one. It's a "proposed consequences" one, not one based on scientifically demonstrated conclusions. There wasn't a robust analysis of the entire diet, they only looked at processed goods containing gluten versus gluten free versions of them. With diets being fiber deficient and highly processed, and with metabolic syndrome plus diabetes rising in response to this of course when people swap the enriched/fortified stuff for alternates, they are seeing decreases *in the amount of vitamins ingested* compared to the fortified versions.

I don't think it's concerning. If one would actually eat healthy non-processed whole food sources without chemicals and stripped of the fiber found naturally. As opposed to virtuously eating "gluten free" proceed stuff. Processed stuff is what's not great for us, not whether or not it's "gluten free".

MyCLLJourney profile image
MyCLLJourney in reply to AussieNeil

Gluten is in wheat, barley, and rye. And, oats can be contaminated with gluten. With that said, always check the label of foods you purchase because often, it can contain wheat.

It's also important to know what other ingredients they add that could contain gluten. If it says "natural flavors", does that include gluten? I've heard some people say yes, it does.

LeoPa profile image
LeoPa in reply to MyCLLJourney

Better still,do not buy anything with a label on. We can recognise a potato, rice, meat,an egg or a veggie. If you aren't sure what it's made of,don't touch it. Those with blood sugar control problems - I find that buckwheat is my friend. I recommend it instead of rice and grains. Way more nutritious and healthy.

MyCLLJourney profile image
MyCLLJourney in reply to LeoPa

I agree 100%

carolly profile image
carolly

You need to be careful with blanket statements about the difference between intolerances, allergies and immune responses here; they are different and the effect of gluten (or different grains containing gluten) is complex. I am a coeliac who has an immune response to gluten so I can’t eat it, but if you saw the chemical concoctions that replace the simple natural product containing gluten you may want to rethink. I have CLL by the way.

MN1999 profile image
MN1999

I didn't think I had any problem with gluten since I had no digestive issues but I did have a troublesome spot of dry, itchy skin on my back that would not heal. My oncologist noted and photographed but had no suggestions. Then a friend mentioned that her husband, who has extremely severe gluten allergies, first noticed the problem with a spot of dry, itchy skin. I researched and then bit the bullet going as gluten free as I could for six months -- and the spot disappeared. I occasionally indulge in gluten now but there seems to be a correlation between the dratted peeling, painful fingertips plus increased joint pain if I stray too far down that path. Additionally the itchy skin spot on my back starts up again and I now get digestive issues. It's a bummer since I think I could live on fresh, home made bread!

Edalv profile image
Edalv

I don’t have gluten intolerance, but since I reduced my consumption of carbohydrates in general to less than 100 grams a day, I eliminated gluten and regular sugar too in the process. I lost some weight, I feel better and with more energy. The main reason I reduced carbs is because my fasting glucose levels were increasing consistently to over 110. I was on a path to get diabetes in a few years. Now after about 2 years on a carb reduction diet and no gluten, my latest fasting glucose levels was 102. When I reduced carbs I almost eliminated gluten from my diet, except when I go to an Italian restaurants and indulge in some bread and pasta… In conclusion, I lost about 20 pounds in about 30 months… and the weight is staying off… but the most important measurement is my fasting glucose level is down about 10% and my CLL numbers are stable…

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