The more that I've researched healing the gut, immune system, and neurological system, the more significant balancing the gut flora seems to be. A healthy ecosystem in the gut seems to be at the foundation of a properly functioning digestive system, which is essential for metabolism to work properly. Without a healthy metabolism the body can't reliably receive the steady stream of nutrients that it needs to function regardless of how good our diet is. Without the proper nutrients pretty much every biochemical system in our bodies begins to breakdown, including nerve cell transmission, detoxification, immunity, regulation of gene expression, repair of injured or damaged tissue, cell membranes and DNA, and replacement of the millions of cells that die every day. Once you realize that our bodies are made of cells, and that those cells function in the world of biochemistry, the central role of nutrients in the body becomes more clear.
Additionally, the gut flora (also called the human biome) are known to directly regulate the expression of over 200 human genes. Pathogenic microbes are able to de-activate certain aspects of our immune system, such as some antiviral pathways and protections built into cells to keep them from becoming cancerous. These microbes help us digest our food and produce enzymes. They also play an essential role in maintaining the structural integrity of our GI systems. For these and so many other reasons, restoring balance to our gut flora is essential for healing. There are many ways of working towards this. One of the most significant things we can do is to take probiotics in the form of either supplements or fermented foods.
Sources of High Quality Probiotics and Notes on Specific Strains:
Commercially prepared probiotics vary greatly in quality. Many of the cheaper and more easily acquired brands, such as those commonly found at the supermarket, do not seem to have the potency of the high quality brands. Many of the cheaper formulations also have added ingredients, such as dairy, gluten, sugar, and artificial ingredients, that people with damaged guts may need to avoid. For this reason, our family (like many others) prefers to order our probiotics from trusted sources online, although there have been several kinds that we are able to get locally that have been helpful.
Custom Probiotics is one of the leading companies in providing a high quality, high potency product that is free of fillers and can be custom formulated for an individual's specific needs. The price can be high, but when compared to truly comparable products (and comparable quantities) it is actually much more reasonable. If you call them, they will also help you figure out which strains would be best for you. There 11-strain blend is said to help with oxalate issues and to be comparable to VSL #3, which is a probiotic specifically used to support people with oxalate issues, although they are not allowed to specifically claim this.
Their most popular blend, the CP-1 blend, contains:
L. acidophilus,
L. rhamnosus,
L. plantarum,
B. Lactis,
B. bifidum.
Their 11-strain formulation contains:
L. Acidophilus,
L. Rhamnosus,
L. Salivarius,
L. Plantarum,
L. Casei,
L. Lactis,
B. Breve,
B. Infantis,
B. Longum,
B. Bifidum
B. Lactis.
Theralac is a newer product which has 30 billion CFUs per dose and contains 5 strains, including:
Lactobacillus acidophilus – 10 billion CFU
(Strain LA-1)
Lactobacillus paracasei – 5 billion CFU
(Strain F-19)
Lactobacillus rhamnosus – 2 billion CFU
(Strain LR-44)
Bifidobacterium lactis – 10 billion CFU
(Strain BL-34)
Bifidobacterium lactis – 3 billion CFU
(Strain Bi-07)
According to the website, Theralac does not contain: Yeast, Eggs, Corn, Soy Protein, Gluten, Wheat, Salt, or Beef Products. It does contain lactoferrin, which is a protein derived from milk which they claim rarely upsets those with a milk allergy, but I mention it as it may be an issue for some. Rather than being enteric coated this product uses a gel to buffer the organisms through the stomach, which they claim is superior, but I should also mention it contains sodium alginate and grape skin extract. I think the grape skin extract may be an issue for kids on the spectrum with various food issues such as phenol intolerance. One of the things that I like about Theralac is that it has lactoferrin, an iron-binding molecule naturally occurring in the body that gives good bacteria an advantage over bad bacteria in the gut. To red more about lactoferrin go here. Theralac also makes a children's version, which comes as a granular powder.
Threelac and Fivelac (sold by Global Health Trends) are formulations of soil based organisms that "eat" yeast and also help fight other pathogens. These are non-colonizing organisms. My family has experienced less die-off when using these compared with other anti-fungal supplements, I think because these organisms don't just out compete the yeast, they seem to actually break it down. This comes as powder in little packets that you mix with water and drink. It has a somewhat sweet, pleasant taste. These formulations does contain a strep strain, enterococcus, so should be avoided by people with PANDAS.
Threelac contains:
Bacillus subtillus 500 million CFU
Enterococcus faecalis 500 million CFU
Bacillus coagulans 500 million CFU
Fivelac also contains:
Bifidobacterium longum 500 million CFU
Lactobacillus acidophilus 50 million CFU
NOTE ABOUT PANDAS- People with PANDAS should avoid strep strains,even friendly ones, as PANDAS is an auto-immune condition in which strep antibodies attack part of the brain. the two strains that I know of that appear in probiotic formulations are enteroccocus and streptococcus thermophilus. This condition is relatively common in people on the spectrum, and is a common cause of OCD, especially in children who had a sudden onset. I believe it is also implicated in Tourette's. S. thermophilus is almost always found in yogurt.
VSL #3 is a high-potency probiotic used by many to combat oxalate issues. Some of the strains in it are known to help degrade oxalates in the gut. When these organisms are present in the gut, there presence signals the body to excrete oxalate into the gut for excretion in the stool rather than through the kidneys and out via the urine, which is much easier on the body. VSL #3 is produced by a pharmaceutical company and as such it can be prescribed by a doctor (although it can be acquired without a prescription as well), which may help with the cost. At around $72 for 60 caps (and one dose is 2 caps) it gets pretty expensive. The package advises people to take between 2 and 8 caps per day. VSL #3 has been the focus of more clinical research than probiotics usually receive.
VSL#3 contains the following strains of bacteria:
Streptococcus thermophilus
Bifidobacterium breve
Bifidobacterium longum
Bifidobacterium infantis
Lactobacillus acidophilus
Lactobacillus plantarum
Lactobacillus paracasei
Lactobacillus delbrueckii subsp. bulgaricus
Klaire Labs produces a large line of probiotic supplements including very high dose formulas, powders, chewables, a special formula for use while taking antibiotics (ABx Support), a special formula to address tooth decay (Prodegin), and a formula specifically for infants. For the specific strains in each formula, go to the site and click on the name of the formula that you are interested in. Klaire probiotics are hypoallergenic and they are free of both gluten and dairy which makes them especially useful for people with autism. This is one of the most informative sites of all of the probiotic companies and is worth poking around. On the right-hadn sde of the website there is a link to download a PDF called "Making Sense of Probiotics" which "summarizes the present knowledge of probiotics, reviews their uses and applications supporting health, and answers commonly asked questions about probiotics."
Culturelle is a probiotic supplement containing only one organism, Lactobacillus GG. This organism survives the acidity of the stomach very well and it's strength in the gut is that it multiplies very quickly, crowding out pathogenic microbes. It is generally considered to be especially good against yeast and clostridia. There is a dairy-free and gluten-free version and can be purchased at many supermarkets and health food stores.
Another probiotic supplement that some people have had tremendous benefit from is called Primal Defense. It is advertised as containing soil-based organisms but the strains listed are the same as many of the other products listed on this page so I'm not sure what to make of that. To see the strains it includes scroll down on the page.
BioKult is the probiotic recommended for use with the GAPS diet (Gut and Psychology Syndrome). It has a moderate potency of 2 billion live cells per capsule, 10 billion per gram, so that people can start at a lower dose and gradually increase the dose up to the therapeutic level in order to lessen the effects of die-off. It has 14 strains of friendly bacteria (including s. thermophilus), which may be the most strains of any probiotic on the market. Once you reach the therapeutic dose this probiotic can become prohibitively expensive but is god to rotate in if possible.
BioKult contains the following strains:
1. Lactobacillus acidophilus
2. Lactobacillus delbrueckii ssp. bulgaricus
3. Lactococcus lactis ssp. lactis
4. Lactobacillus casei
5. Lactobacillus helveticus
6. Lactobacillus plantarum
7. Lactobacillus rhamnosus
8. Lactobacillus salivarius ssp. salivarius
9. Bifidobacterium breve
10. Bifidobacterium bifidum
11 Bifidobacterium infantis
12. Bifidobacterium longum
13. Bacillus subtilis
14. Streptococcus thermophilus
This is the story of how my son has recovered from an autism spectrum disorder and how I am managing and working to recover from a neuro-immune disease called Myalgic Encephalomyelitis. I discuss the ups and downs of our lives as well as much of the information that led to my son's recovery and my own progress- autism and M.E. are both manifestations of the same underlying disease processes.
This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.
And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!
And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!
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Sierra, in your research on probiotics (which is clearly pretty extensive), have you come across any strains which are more suited to young children? I have read that the flora profile in young guts is different and I am looking for something to help our 4-year old who reacts with eczema, facial flusing and acne to dairy and other unidentified things.
ReplyDeleteGood question....there are several that are specially formulated for infants, including one by Theralac and one by Custom Probiotics. Another good one for infants is BioGaia:
ReplyDeletehttp://www.biogaia.com/
If you have specific needs, such as your 4-year-old, Custom Probiotics is very helpful- they will talk with you over the phone and come up with a custom blend to meet individual's needs. It's not cheap...but good probiotics aren't. Please post here and share if you find something that helps!
Sierra, Thank you for this priceless post. I have always used BIOKULT for my boys but have just recently switched out for my oldest because of his severe OCD. I am now using GUT PRO. But i have the powder, not the capsule form. Will this powder survive the stomach? Is it better to take probiotics in capsule form? I just spend 150 dollars on one bottle. So please say yes.
ReplyDeleteI'm honestly not aware of that one, but some powders are designed to survive the stomach, so it's quite possible that it does. You do tend to get what you pay for so that is in your favor here. I'll look into that one.
ReplyDeleteMy daughter has been on a GFDFSF elimination diet for almost 6 months based on an IgG allergy test. Previous to this she had been exhibiting body tics and increased frustration among other things but is not autistic. She was put on various supplements by our naturalpath with one being metagenics ultradophilus to start. Through trial and error of some of the natural supplements she has been taking we are now realizing that her symptoms of increased OCD and inability to cope (extreme fragility) has been caused by the probiotic specifically. She has never been like this and we realized it when we tried to switch her probiotic to the ultrabifidus. She had an even worse reaction. We have stopped the probiotics for a couple of days now and don't intend on giving these ones to her again. It breaks my heart that this has been the cause of her struggling these past months but in all my research to date we are being told that probiotics are necessary for optimum gut health - to create the balance that so many struggle to have. In your experience with probiotics have you come across this before and if so how do you manage the toxic bacteria from taking over? Sorry for being so long winded. Thank you.
ReplyDeleteWhat you are describing sounds like PANDAS, which is an auto-immune reaction that causes neurological symptoms including OCD and fragility, and can be triggered by certain probiotics. Specifically ones that are strep strains (which may not be obvious from their names) have been known to do this. I suggest googling PANDAS, keeping in mind that much of the info out there reflects a narrow definition of the disease. It is now being called PITAND or PANS to reflect a braoder understanding of what is going on.
DeleteIt is likely that you can find other probiotics that she won't react to. It's true that probiotics help heal the gut, but they are not the only way. If you have a hard time finding probiotics that she can tolerate, you may want to explore the GAPS diet as a method of gut healing that may allow her gut to heal enough that she can tolerate probiotics again.
Thank you for the great post! I've been searching for the right probiotic for our family so your post helps a lot. My son has some behavioral issues due to his sensitivity to dairy, gluten, and eggs. His hyperactivity and self stimulating behavior improved dramatically when we eliminated all grains and starches from his diet. We know that he doesn't have a healthy balanced gut flora but not sure what kind of probiotics he needs.
ReplyDeleteYou mentioned soil based probiotics, I'd like to share our experience with SBO. As soon as my son took this SBO, he became severely worse physically, mentally, and behaviorally. The side effects were pretty scary so we backed down on the dose. He was better but not great, continued with loose stools/diarrhea for weeks. I took myself for a short period of time but had bad reactions from it such as depression, brain fog, extreme tiredness. I don't quite believe it's a die-off reactions. It took me a while before I decided to believe that it can't be from a die-off. After researching more about SBO, I found many controversial issues surrounding SBO. Some people who are on SBO get very ill after taking it.
I know that some people find healing through SBO but for our family, SBO seems to cause worse reactions.
we might try 11strain powder this time.
Thank you for this thorough sharing. Did you learn anymore about Gutpro? My daughter and I are taking it now and I am not sure if we will continue d/t side effects/die-off.
ReplyDeleteMy daughter "had" PANDAS. What we found was that she was over reacting to ANY bacteria--good or bad. Therefore, she is not tolerating ANY prob's or friendly bacteria. Once pulled, PANDAS symptoms go away. Something was triggered at the onset of PANDAS in her body where the body cannot distinguish good vs bad bacteria. The key is turning off this "switch" and restoring bodies ability to recognize the good from the bad. Rebecca from "Regarding Caroline" wrote about this in more detail. NO probiotic use here for my daughter! Not until the blood brain barrier is healed and sealed and her body calms down.
ReplyDeleteSo glad you figured that out! I've been chatting with Rebecca about this, her blog post is a great one, but not all PANDAS kids need to be without probiotics or do best without them. Some do well with some. The trick can be identifying which ones, etc. PANDAS is not always caused by bacteria in the first place so maybe that is part of why?
DeleteMy son was recently diagnosed with PANDAS SYNDROME and we are trying to find the way through this terrible time. I just stumbled upon the GAPS diet and have ordered the book. Any help/resources you can offer is greatly appreciated!
ReplyDeleteI hope this diagnosis gets your son the help he needs! I am pretty new to PANDAS myself, and am working on a blog post about it. My only advice right now is to join parent groups, I know there is at least one great one on Facebook. You are probably already aware that PANDAS is being renamed to reflect the fact that it presents in so many different ways, and is not only not just always caused by strep A, but not even always caused by bacteria. My suspicion that we have it is one of the reasons that we chose to try camel's milk. Camel's milk functions in many ways like an IVIG treatment, but at a fraction of the cost and is possibly safer.
DeleteHi Sierra,
ReplyDeleteThanks so much for your blog. I've said this before in the past, but after 15 years of being sick, and now close to being bedridden (and living alone), I feel I've hit rock bottom and am very worried that I'll survive or not. I've read a few posts here about oxalates and GAPS and probiotics, so it gives me some hope...so thank you.
I have a question though: If you weren't able to tolerate the GAPS fermented foods (I am not able to either, even though I crave real sauerkraut), what specific probiotics did you end up choosing to help with oxalates and other issues? I realize we're all different (and am familiar with the PANDAS situation, although I've never heard it mentioned as 'autoimmune'), so with that in mind, could you help me by suggesting a couple of different probiotics (or more?) that seemed to help you before you were able to tolerate fermented foods?
Thank you.
We used Biokult mostly, as well as some probiotics from Kirkman I think, and Custom Probiotics. I didn't know about our oxalate sensitivity when we began GAPS so didn't take it into account. I would look into VSL #3 as well...that one is great for oxalate issues. I haven't posted this yet, but I have recently learned that I have celiac and I think the oxalate issues, etc is the direct result of that. Have you looked into the possibility of celiac for yourself?
Delete