High Dose Thiamine Can Help Treat Fatigue in IBD?

I came across this article that mentioned that high dose thiamine supplementation can help the fatigue associated with IBD and fibromyalgia:

http://www.prohealth.com/library/showarticle.cfm?libid=18187

https://www.prohealth.com/library/high-dose-thiamine-improves-fibromyalgia-symptoms-31178

I tried taking three 500 mg. capsules three times a day for a few weeks but I did not notice an improvement in my levels of fatigue.

I also thought it might not be good to take just an isolated B vitamin by itself, that it might cause a deficiency of other B vitamins.

Boron Detox

After being told through the BioMeridian that I was low in boron, I began supplementing boron at 12 mg. a day. After a couple weeks, I experienced an optical migraine that started out as a small blind spot in my vision that gradually grew after several minutes and expanded in an arc with bright black and white jagged edges. I also had increased nausea and diarrhea. I later read that die-off or detox is common, as it is potent at killing candida.

Here is a great overview of why boron is important:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712861/

I was mainly interested in arthritis aspects, as I have a lot of arthritis that travels from joint to joint that is common in Crohn's disease.

After the reaction, I cut back to just one milligram per day and will work slowly up to two milligrams per day. I have not had any reactions since then.

http://www.health-science-spirit.com/borax.htm

This article shows the alternative medicine usage of boron and description of Herxheimer reactions.

8/15/18 update: I am now able to take 1-2 mg. a day with no increased reactions.

Naturopath's Order of Operations for Gut Healing

Our naturopath recently responded to a question about prebiotics:

1. You mentioned taking prebiotics. Are these now considered safe for SIBO and IBS and will not grow bad bacteria? Are they selective in feeding only good bacteria and not gram negative bacteria? Recommended brands?

Step 1 is getting "bad" gut bugs under control. For this, I recommend the EPF oil. 

Step 2 is getting the "good" guys to grow and this requires a healthy gut wall and some prebiotics. I like Fumaric and Fulvic acids for this - both are in the Kona Gold mineral supplement. I also like arabinogalactins found in GlutAloeMine. I don't usully see patients getting better without this. However, I do agree there is a correct order of operations.

I cannot do Step 1 because my detoxification pathways are blocked, and it causes me to have too much reaction when taking a bacterial killer. So I have decide to use diet to minimize bad gut flora, continue going up on probiotics, which moves out bad bacteria, and then also try Kona Gold again for the fulvic acid in it. This is a product I took years ago and did not seem to react to much.

Restore (https://shop.restore4life.com/) has humic and fulvic acids in it, but it causes too much reaction for me to tolerate. 

I will also try arabinogalactins.

Blocked Detoxification Pathways - Blockade on the Path to Healing

Uni and I have both been told that our detoxification pathways are blocked, after visiting naturopaths. Our symptoms are that we are not able to tolerate various methods of healing, whether herbal antibiotics such as oregano oil, or detoxification protocols such as chlorella, citrus pectin, and things that remove heavy metals. Uni is much less sensitive than I am. For me, this is my greatest blockade toward healing, and it keeps me from being able to do so many things that I know would help me get well.

Our naturopath recently addressed this concern with the following:

Regular bowel movements, dry skin brushing, breath practice - slow, long, deep, focused breaths for 10-20 min daily, lots of water and urinating, plenty of minerals, rebounder and sweating regularly 

I think we need to do as much as possible that isn't supplements to get your excretion pathways open!! 

Binders are the next step and chlorella and charcoal are the gentlest binders. Others to consider are spirulina, citrus pectin and clay which I believe you are on.  

Uni and I both know that we have liver stones, since they have come out at various times in response to added oils in the diet and candibactin. So we have considered doing the liver/gallbladder flush that involves 1/2 cup olive oil, grapefruit juice, and espson salt. In response to questions about liver flushes our naturopath says:

Are liver flushes (olive oil/citrus) recommended? Do you have a recommended protocol? Dangerous in any way? We both know we have liver stones.

I don't think these work overly well. I think a better idea is using herbs to dissolve stones over time. 

 

Human Para Foundation: Test and Treat MAP to Cure Crohn's Disease

This article recently appeared in my inbox from Human Para Foundation:

https://humanpara.org/2017-Philly-Oken/

The fascinating videos on this page describe a case study of a woman with some Crohn's features to her disease who was successfully tested for MAP and treated for it with a cocktail of antibiotics. The first video describes the study, and the second video is the question and answer session that followed.

Also on this page is the following video:

https://www.youtube.com/watch?v=4CELZLY2X9c

In this video, a man testifies that he was cured of severe Crohn's through antibiotic anti-MAP drugs. It also says that there is a doctor in New Mexico that treats Crohn's with anti-MAP drugs.

There is also now a test that is claimed to detect MAP:

https://www.otakaropathways.co.nz/product/order-your-test/

It is $250, and you must get your blood drawn locally and have them send it to the lab, which is in New Zealand. The test is also not FDA approved.

Should we do this? I do not know.

Colonoscopy Without Sedation

The following is a post I made about my experience of having a colonoscopy without sedation on the IBDSupportFoundation online community website.

Hi, Anyone ever had a colonoscopy while awake? What are the considerations [...]

Posted by @rochel in IBDSF Online Community

Hi,
Anyone ever had a colonoscopy while awake? What are the considerations for doing so and how did it go?
I am being scoped soon and plan to try to do so while awake. I hate being put to sleep. It is very traumatic for me, probably due in part to post traumatic stress from a previous incident.
Any tips for getting through the procedure while awake are welcome.
Would be interested in hearing if anyone knows how sensitive the scope is. I am told I am not allowed to move, but how fussy are they about that? My goodness, we move even just by breathing! And talking! Any of that allowed?

Posted by @motherfish

Yes. I did it.

I did it for very similar reasons. I was traumatized by having general anesthesia for an operation and not being able to wake up well. I also did it because cumulative anesthesia events are a risk factor for dementia.

So how was it for me? Well....I thought it was pretty hard to do. I could do it again, but it was a thing to get through. It is uncomfortable, although not extremely painful, at least for me. It is naturally highly invasive, and that is the most negative aspect to it. It just feels really weird and crampy. The worst part was getting through to the ileum area and getting biopsies there, but that was critical to my diagnosis. I don't remember being told not to move.

I also tried doing the endoscopy (upper scope) at a later time without anesthesia. That did not work at all. That was really awful and I had to be put out for that! The gag reflex! I wouldn't try that again without anesthesia.

So I would say that if you are determined to do it and feel strongly about it, you can get through it, but it is kinda hard, and kinda long for so much hard. But it is possible to get through.

BTW, I am a woman and I consider myself sensitive and squeamish, but very determined. So that's how I got through it.

Also, I made sure my hospital used the kind of cleaning method talked about on mercola.com for cleaning the endocopes. And one more thing. I did not use the colon prep stuff they recommend. It is toxic, and I just used milk of magnesia and electrolytes. I also cut way down on eating for several days beforehand. I got no comments on how my colon wasn't cleaned out enough.

NAET and Crohn's Disease: Can Allergy Elimination Help?

When I first heard about Nambudripad's Allergy Elimination Technique (NAET) I laughed at the ridiculousness of it. But the person telling me about it was Dr. Nelson, of the Center for Advanced Medicine, in Encinitas, CA, and I actually had a great deal of respect for this man. So I decided to give it a try.

The idea behind NAET is that if you balance your body energetically in the presence of an allergen, that your body developes an acceptance of it. This is accomplished with acupuncture or acupressure, and the patient holds small vials of water that have the "energy signature" of a substance.

I have been around for quite some time, but this was a new paradigm to me, the idea that there was an "energetic" side to me, that is unseen on the body, but has meridians that have very specific pathways throughout the body.

After "clearing" to the first couple of "mixes", I tried the vitamin C mix. This clearing caused me to have dizziness, light flashes, nausea, and most disturbingly, angioedema, which frightened me enough to go to the emergency room.

Now I knew there was something real to this. And in my typical steely determination, I was going to conquer this and move ahead in my health. I went on to try the calcium mix. This caused a week long bought of illness, but in the end overcame an allergy to milk! I was hooked!

Then I tried the sugar mix. This time, immediately after being treated, I began to get very ill. I was so ill that I couldn't drive home from the appointment for three hours. I went on to have a week long period where I was extremely ill, as ill as I have been with a bad flu. I also had angioedema then too, just not as bad. Toward the end of the week, my blood pressure spiked very high and my heart hurt, and I almost went to the emergency room. But it got better.

After that, I continued to have feelings of hand tingling and throat closing, constantly for months, then only when I was sick. It has been ten years now, and I basically have never recovered from it. I even visited Dr. Nambudripad up in Buena Park, but she could not help me recover.

So...I do not really like NAET. It is tremendously powerful, and it taught me the power of the energy system of the body. It is not a silly parlor trick. My experience though is not typical. Most people do not have this much trouble!

Can NAET help Crohn's disease? I would definitely recommend other therapies first, over NAET. For one thing, many food allergies and sensitivities can be resolved by resolving leaky gut using such things as Restore, Enteragam or probiotics. I would recommend trying NAET after you have done everything else, and there is a pesky food allergy you want to get rid of.

Review of Primal Defense from the Perspective of a Crohn's Patient

Primal Defense is a probiotic by Garden of Life. It debuted in late 1998 as Prime Defense at first and was promoted by Jordan Rubin, who wrote a book called Patient Heal Thyself, and later, another book called The Maker's Diet. He was a Crohn's patient whose condition became so severe that he nearly died. He traveled the world over and tried many alternative treatments which did not help him, until he discovered what he called, "black gold". It contained soil organisms as probiotics, which was very uncommon to use at that time. He claims this probiotic formula, plus a modified SCD diet that included raw milk and coconut oil, helped him regain his health and start the Garden of Life company.

I discovered Primal Defense after reading a book in a health food store called Beyond Probiotics in early 1999. I had tried many probiotics in the past, after feeling that I had dysbiosis from taking multiple rounds of antibiotics. I had chronic diarrhea and felt sick most of the time. I was later diagnosed with Crohn's disease. I was sure I had too much bad bacteria, so I thought that taking good bacteria might help balance things. But none of the probiotics I took helped me. However, after taking an entire year to work slowly up on Primal Defense because of die-off, my diarrhea was gone, and I felt really quite well.

Primal Defense has worked really very well for me. The only thing I have noticed, is that during times when I would temporarily stop taking it for some reason, my disease would come back with tremendous force that wasn't there before I started taking it. My theory is that Primal Defense is so strong that it can also displace good native flora in your gut. Then if you stop taking it, the bad flora which are more hardy and virulent come back and take over gut real estate.

The probiotics in Primal Defense are not resident bacteria, but transient. I am currently exploring the Natren probiotics, which they claim are actual human origin strains that will implant in your gut.

After so very many years of taking Primal Defense, I discovered that I am allergic to one of the probiotics in it called Lactobacillus casai. This bacteria also happens to create histamine in the gut, which can lead to the many symptoms of Histamine Intolerance. Because of this, I am not doing quite as well on Primal Defense, but it is still necessary for me to take it to avoid becoming very ill. So I am currently looking into histamine reducing probiotics to help balance out the histamine problem.

I felt that Primal Defense was absolutely revolutionary when it first came out. Its popularity caused Garden of Life to rise to become a huge company. It was a probiotic that actually worked, and it changed many people's lives. What I have noticed, is that now, many companies have come out with very similar formulations in their probiotic products. Even the prescription VSL#3 has a similar line-up of probiotics to Primal Defense.

The important thing to remember when taking Primal Defense is that, if you are a Crohn's patient, you may react to it with the die-off of bad bacteria, and feel even sicker for awhile. This is actually a sign that the product is working, and you can back down on the dosage for awhile until you are able to tolerate higher amounts.

Primal Defense also contains "Ionic Plant Based Minerals". My understanding of what this is is that this is an ingredient that is similar to Restore:

http://restore4life.com/

which is the remains of ancient bacteria that grew on peat moss. The product contains the "signals" of bacteria that work in your gut to close the tight junctions that cause leaky gut when they are open.

This "Ionic Plant Based Minerals" ingredient likely makes Primal Defense even more powerful for healing a damaged gut.

Overall, I do recommend Primal Defense, but I also recommend that it is not your only probiotic, and that you incorporate other bacteria that are resident into your diet.

Avoiding Infections as a Crohn's Patient

Crohn's patients are often more susceptible to all kinds of infections than the average population. This is due partly to the fact that Crohn's disease is considered an immune-deficiency disease, a disease that arises due to a faulty immune system. One portion of the immune system is defective, which causes the rest of the immune system to go into overdrive.

Many Crohn's patients are also on immunosuppressive drugs such as prednisone and biologics. These drugs cripple the immune system in order to stop the symptoms of Crohn's disease. However, they leave the patient more susceptible to various infections.

Below are some tips for living in a pathogen filled world that can a long way towards protecting your health from infections.

*************

1. When out in public, try to avoid touching your face at all. Germs can enter the body through the eyes, nose, mouth, open wounds, and possibly the ear canal. Cover open wounds and try to avoid touching these other areas of the body.

Everyone however gets an itchy nose or something in their eye or ears. If you need to relieve this itch, try using the back of the hand, and avoid the actual opening (the mucous membranes) where germs can multiply easily.

2. When you arrive home from a public place, use a hand sanitizer first to kill germs on the hands and to kill germs under fingernails and other crevices that are hard to get with soap and water.

Also helpful is digging your fingernails into a soft soap bar and then brushing them with a nail brush. Hand sanitizers do not kill norovirus and other intestinal viruses, so soap and water is also necessary.

3. Wash your hands and forearms, and your face as well. Your face will have germs on it if you have touched your face while you are out, and could then be transferred to the mucous membranes.

Lotion can be applied to face and hands after washing if necessary to prevent dryness.

**************

These three simple steps can go a long way toward preventing infectious disease. Other tips about avoiding intestinal pathogens, are to be careful about eating in restaurants. Choosing to eat only hot foods, and not eating with your fingers will eliminate many pathogens.

It is quite possible to enjoy all the world has to offer, without taking in all of the pathogens that make life miserable. Just a bit of self-control and awareness of germs can greatly enhance your life.

Healing Leaky Gut: Analysis of "Eating Dirt" video by "Dr. Axe"

This is a interview about his new book called "Eat Dirt", a digital copy of this book is only $1.99 right now.

• He is against soaps, hand sanitizers and personal cleaning products because they can disrupt the microbiome and can be toxic. However, he uses essential oils such as tea tree oil instead of soap to clean his hands from public bathrooms, etc. He also recommends frankincense essential oil.
• He is also is for eating raw and unwashed produce, says that organisms that are found in the dirt on produce such as carrots can assist you in digesting them, 
• Unlike Jinni Patel Thompson, who is against soil microorganisms in probiotics, he says that soil microorganisms are the "king of probioitics" and suggests getting probiotics with Bacillus subtilis, Bacillus clausii, and Bacillus coagulans.
• He recommends raw foods such as fermented raw milk, and raw honey, and says that raw honey bacteria can take up residence in the gut.
• He recommends fermented foods such as miso, sauerkraut
• He recommends powdered bone broth and powdered collagen, especially fish collagen, for healing the gut
• His book has a Chinese medicine viewpoint, and will suggest foods based on several gut types you might fall into. He recommends Healing With Whole Foods by Paul Pitchford for further Chinese medicine information.
• He has a webpage about leaky gut right now.

He has a philosophy that I feel is too blasé about the real dangers that certain microorganisms in your environment could pose to your health. People who have weakened guts are especially susceptible to infections. However, certain foods, like raw honey, have built-in antimicrobial aspects that make the product generally a safe bet. I believe that sauerkraut also has some aspect that keeps dangerous microorganisms from growing. However, raw milk kefir seems like a more dangerous choice. It is worth more research.

How to Heal Leaky Gut Syndrome: Review of John Bergman Video

According to this video from John Bergman, leaky gut (and by extension, Crohn's and other IBD) is caused by:

• vaccines causing an improper immune response (Th2 response)
• GMO produce and meat from animals that eat GMO produce
• antibiotic use (decimates the gut microbiome)
• prescription drugs (not specified - seems to be against drugs in general)

How to fix it:

• restore the microbiome by raw eating vegetables, raw milk (for the bacteria)
• refusing to eat GMO
• saturated fats such as coconut oil
• adequate vitamin D
• iodine (he recommends ancientpurities.com)
• large amounts of vitamin C (4,000 mg)
• probiotics
• exercise and stress relief

He mentions getting bacteria for your body from raw milk and raw vegetables. It seems a bit dangerous to me. He claims that traveler's diarrhea is often the body getting rid of bacteria that it doesn't want and taking in bacteria that it does want. 

Listen To Your Gut - Jinni Patel Thompson: Oregano Oil and Probiotics

We are now reading Jinni Patel Thompson's book, Listen To Your Gut, and exploring her theories on natural methods of overcoming Crohn's disease. Jinni basic protocol is to use oregano oil to kill the infections in your body that are causing the Crohn's disease, and to use probiotics to replace the gut flora. She also says that probiotics will act to kill and crowd out bad bacteria in the gut.

http://www.listentoyourgut.com/

She believes that to kill the infection that could be causing your Crohn's disease you need to take 30-60 drops of oregano oil daily for as long as six months or until the infection is conquered. The problem with this recommendation is that many websites do not recommend long term oregano oil internal usage, saying that it can cause clotting issues and problems with toxicity with the liver.

A wikihow page says the following:

Do not use oregano oil for long-term treatment. Because oregano oil may interfere with iron absorption and can impact blood clotting, oregano oil should only be used for short-term treatments of targeted conditions.^[5]

• Oregano oil is not a recommended daily supplement, even for individuals who suffer from chronic bowel inflammation or long-term gastrointestinal problems, unless it has been prescribed by a health professional.

http://www.wikihow.com/Get-Health-Benefits-from-Oregano-Oil

Dr. Mercola also does not recommend oregano oil for long term use, and suggests using it under the tongue most of the time.

Other sites talk about how it will kill off all your good flora. Jinni talks about this as well, if fact she thinks that is the point - that it kills off bacteria, but you must follow it with doses of probiotics. She says that her oregano oil protocol is as effective as taking vancomyacin, but has a broader spectrum of effectiveness in that it includes fungi and parasites.

As far as probiotics are concerned, she only recommends one company Natren. She (and the company, whom I spoke with personally) claim that their probiotics are human origin and human implantable strains.

I took Natren probiotics before discovering Primal Defense, and did not find that they were able to control my disease symptoms. I found that Primal Defense was much stronger. They did cause a die-off reaction, indicative of killing bacteria, but my symptoms were the same after taking the product. I also felt that the product was very expensive, at a $1 a pill, nearly twenty years ago.

But they have a couple of Bifidobacterium products that I am interested in. Bifidobacteriums have the reputation of being histamine lowering, so I am interested in finding one to take right now. After consulting with the Natren company, they suggested taking LifeStart, which  is the best of their probiotics to take if you are sensitive to die-off from probiotics, and a good place to start. It is their probiotic for babies and contains Bifidobacterium infantis. This probiotic has clinical studies that show that it is histamine lowering and helps people with IBS.

Jinni Patel Thompson does appear to be very negative about probiotic formulations that use soil organisms like Primal Defense from Garden of Life, which I have used for almost twenty years. She says that soil organisms are scary because they are spore forming and can cause invasive infections. My understanding is that the only soil organism in Primal Defense is Bacillus subtilis. This wikipedia page:

https://en.m.wikipedia.org/wiki/Bacillus_subtilis

has many positive things to say about using Bacillus subtilis as a human probiotic and even says it that appears to be a normal human resident! It has been used extensively for about 100 years to enhance the immune system and help people people with digestive disorders. Also, it is the organism that natto is made out of which Japanese people have been eating traditionally.

I think that Jinni Patel Thompson is intelligent and has well thought out alternative answers to Crohn's disease. I agree that Crohn's disease can respond to treatment for infection. But her views on oregano oil are extreme, and her views on probiotics are very narrow. But I will continue reading...

Metagenics CandiBactin AR and BR Stops Rectal Bleeding

Because we know that SIBO and dysbiosis are a part of Crohn's disease, it makes sense to attempt to eliminate any bacteria in the small intestine. Dr. Allison Siebecker is a foremost authority on SIBO, and has created a great website on the subject:

http://www.siboinfo.com/

On the following page, she outlines an herbal protocol for overcoming SIBO in the small intestine:

http://www.siboinfo.com/herbal-antibiotics.html

We have one family member with Crohn's disease that has tried taking Candibactin AR and BR from this protocol. This person was diagnosed with proctitis, and experienced rectal bleeding on a daily basis. They found that the Candibactin products were very powerful in inducing die-off reactions, and they experienced a tremendous amount of increased diarrhea, nausea and pain while on it. They are going up on the dosage slowly, and over the time period of two years, have only made it up to one third of the dose. However, at this point this person's rectal bleeding has receded and has been gone for about a year.

Crohn's disease is notorious for having flares and remissions, however, this person has had Crohn's disease for ten years and has experienced steadily increasing disease until trying this protocol.

It makes me wonder how many more people would benefit from this type of treatment. Also, this treatment is one of the steps listed in Jini Patel Thompson's eight step protocol on her website.

LDN - Low Dose Naltrexone - Powerful Immune Boost

Low-Dose Naltrexone has been proposed as a treatment for many types of immune-mediated illnesses such as cancer, multiple sclerosis, IBD, rheumatoid arthritis and other autoimmune disorders. LDN is not used by mainstream physicians, and if someone is going to try this treatment, they will need to find an alternative physician willing to prescribe and follow a patient with LDN.

There are several websites that report on LDN and a great book has been written:

http://www.lowdosenaltrexone.org/

http://articles.mercola.com/sites/articles/archive/2011/09/19/one-of-the-rare-drugs-that-actually-helps-your-body-to-heal-itself.aspx

https://www.amazon.com/LDN-Book-Little-Known-Naltrexone-Revolutionize-ebook/dp/B01CDH83U6/ref=sr_1_1?ie=UTF8&qid=1490503305&sr=8-1&keywords=low+dose+naltrexone

Naltrexone is a drug normally used with drug addicts to negate the effects of opiates. Is was discovered that at a lower dose, the drug actually works as a powerful immune stimulator. This forces the body to deal with pathogens that may be irritating the body and causing the autoimmune disorders, or elevate the immune system to overcome cancer.

This powerful immune boost can cause intense immune reactions in people. It can cause an exacerbation of existing symptoms, but with most people, it eventually results in eliminating their symptoms or at least reducing them. However, the immune reactions, which can cause die-off reactions, can be very intense and difficult to deal with. If someone is already ill, becoming more ill is hard to take. And many people testify that it can take many years, as much as ten, to finally get well.

LDN is a drug, and as such, it is not necessarily adding something beneficial to the body, as opposed to vitamins or foods. It is not known to have any long-term side effects. My opinion is that LDN is like pulling your body up by its own bootstraps. If you don't have what it takes inside of you, it might not work well. Or I wonder if it might push the body to do more than it really should do. The body is designed with intelligence, and playing with it with this drug does make me a bit nervous.

Crohn's disease may be a disease that is caused by a specific lack in some part of the immune system. For instance, many Crohn's sufferer's have low secretory IGA. Instead of overworking the rest of the immune system with LDN to compensate for that lack, what about adding to the body what is lacking, by taking a product like EnteraGam, which contains cow immunoglobulins? I truly do not know enough about this to know if this is right, but I wonder.

SIBO With a Negative Result on the Hydrogen Breath Test

SIBO (small intestine bacterial overgrowth) is a frequent cause of IBS. This idea was developed by Dr. Pimentel of Cedars-Sinai.

https://www.cedars-sinai.edu/Research/Research-Labs/Pimentel-Lab/

There is a hydrogen breath test that has been developed to determine whether a person has bacteria in the small intestine that produce hydrogen. Methane is often also tested.

However, I recently learned that if someone is negative on this test, that does not mean that they do not have SIBO! Apparently there are other bacteria that can be involved that don't produce hydrogen or methane. So just because a patient has a negative SIBO test, this does not mean that they do not have SIBO or IBS.

High blood B-12 levels and high folate levels are an indication that there is bacteria in the small intestine that are producing these vitamins, or at least B-12 analogues in the terminal ileum of the small intestine, according to Dr. William Sandborn and NP Elizabeth Evans, of UC San Diego Health System.

Dr. Sandborn also stated that Crohn's is a disease of dysbiosis, and that most Crohn's patients have SIBO.

EnteraGam is a Powerful Product!

EnteraGam is a medical food treatment that I read about in an article about IBS in Prevention magazine.

http://enteragam.com/

EnteraGam contains immunoglobulins that can boost immunity in your gut and has clinical trials that show that it has positive effects on IBS and IBD. It is a natural product, a food, and not a drug and has no drug side effects. Sounds great, yeah? Well,...

There is a definite ick factor, however. This product is actually made from raw cow blood. I had quite a few questions for the company that I needed answered before I would ever consider using this product! Below is a consolidation of an email exchange that took place with Tim Bradshaw of EnterGam. My questions are in bold.

Thank you for your excellent questions regarding EnteraGam. I’ll try to answer to the extent possible and hope this information helps you. You may also want to visit our website at: www.enteragam.com

Is EnteraGam a raw product or is it sanitized?
EnteraGam is not a raw product; it is manufactured in a GMP facility from USDA edible grade plasma collected under rigorous controls from cattle. It undergoes extensive safety analysis, including tests looking for pathogenic bacteria, before packaging. Because it is taken orally it does not need to be sterilized.

Why does it need to be supervised by a physician?
The FDA requires that all Medical Foods are used under medical supervision.

Does this product cause any negative reactions?
While the safety of EnteraGam is well-documented, like any other substance introduced into the body, whether it be a drug or foods that one eats, side effects can sometimes occur. The side effects most frequently reported for EnteraGam include abdominal cramps, constipation, diarrhea, headache, and nausea. When these occur they are typical mild to moderate in intensity.

Can EnteraGam cause detoxification symptoms from healing the gut?
To the knowledge, we have not received reports of detoxification symptoms appearing in patients using EnteraGam.

Does this product make people feel a little worse before they feel better?
We have had some patients in the first week feel a bit worse. It seems to be transient and if they stick with the product, they feel much better the week after.

Is the product heated above 165 degrees F? Or is it just checked for pathogens? I understand that this product is made from blood, and all kinds of things can be present in that. I'm trying to understand how safe it is.
EnteraGam is an exceptionally safe product – in fact it has what is called GRAS (generally recognized as safe) status with the FDA. In addition to the testing of the final product, there are numerous steps in the manufacturing process that ensure no pathogens are present. You cannot heat sterilize a protein product as that would destroy the structure, and thus, activity of the immunoglobulins that are present. Over 3 million doses of EnteraGam have been taken by patients so its track record for safety is well established.

What specific aspects will the doctor be supervising? Is there something dangerous about the product that doctors need to watch for?
Medical supervision is required for all medical foods and your physician should always be monitoring your health status. Also, if you were to experience some mild constipation, you would want to contact him / her for a possible reduction in dose.

Does this product boost the immune system or directly kill bacteria or cause the body to respond to pathogenic bacteria in the gut?
EnteraGam does not kill bacteria – that would make it an antibiotic. While not really an “immune modulator” it does support the immune system by binding to breakdown products from bacteria and viruses in the GI tract that, left unchecked, can cross the epithelial lining of the intestine and cause inflammation and other problems.

Does this product act like bovine colostrum in that is has immunoglobulins?It is similar to bovine colostrum but more potent due to the higher concentration of immunoglobulins present.

Please tell me if EnteraGam is filtered to remove viruses and any other type of pathogen. If possible, please explain or send me a link to information about the filtration technique used, so I can understand how safe this product is. I will appreciate detailed, technical information.
Pathogen removal is achieved by a variety of steps in the manufacturing process, but not by filtration as that would also remove the protein, and thus, immunoglobulin content. The product is then tested for viruses and microbes before packaging. I’m afraid that our manufacturing process is proprietary so I cannot provide a link where you can find details.

I read that Enteragam is not absorbed until the large intestine. I have Crohn's disease of the small intestine. Can Enteragam have any effect on the small intestine? After it is absorbed in the large intestine, does it have systemic affects that could possibly help with my small intestine problems?
The immunoglobulins in EnteraGam are not absorbed intact into the bloodstream; they are first digested into much smaller peptides and individual amino acids. Our studies support others demonstrating that a significant amount (40-50%, if I recall correctly) survives past the stomach before entering the small intestine. Over the last several years we’ve collected significant data on the efficacy of EnteraGam in Crohn’s disease. If you run an internet search on “serum-derived bovine immunoglobulin” and IBD, you’ll find a number of articles discussing this efficacy.

In the end, I decided to go ahead and try EnteraGam. Since I am notoriously sensitive to treatments that are capable of causing die-off reactions, I tried 1/4 teaspoon for several weeks, and I could not handle the diarrhea, nausea, headache and other typical die-off symptoms. I then tried less, but have not found a dose that I can tolerate yet.

My feeling is that this is a powerful product that might actually help me if I could actually take it. But it will be impossible or very hard for me to do so. So it is a fail for me.

The IBD-AID Diet

I just recently discovered a new evolution in the SCD diet trend - the IBD-AID Diet.

http://www.umassmed.edu/nutrition/ibd/ibdaid/

This diet is like the Specific Carbohydrate Diet, (SCD), but with more attention toward building up your gut biome, the importance of which recent research has brought out.

After people started talking about how important it is to build up your good gut flora, I became concerned that GAPS Diet, the SCD diet and others that eliminate food for bacteria, might be harmful to your gut flora.

Apparently, diversity and health in your gut flora is associated with less Crohn's disease.

After so many years on the GAPS Diet, and the SCD, I was concerned that I was starving the bugs that might help me.

The IBD-AID Diet seems to address this issue. It even allows a grain! Oats are allowed on the diet, with the evidence that oats selectively feed good flora.

Apparently the diet has tested well in clinical trials, with some people going into remission or able to eliminate some of their drugs.

When the GAPS Diet Doesn't Work, What Do You Do?

Our family first learned about the GAPS Diet in December 2012 from Dr. Mercola's website, in an article like this:

http://articles.mercola.com/sites/articles/archive/2012/05/12/dr-campbell-mcbride-on-gaps.aspx

It is often recommended for autism, but also for Crohn's disease as well.

We started in January 2013, but skipped to the full GAPS diet, and didn't do the intro or the progression upwards. We did the full GAPS diet for an entire year, with no improvements in illness level. In fact, toward the end of 2013, the illness level in the family got worse.

In 2014, we decided to do the GAPS diet right, and began with the Intro part of the diet. I had improvements in the amount of diarrhea I had, but other people in the family got severe Crohn's flares. I do not believe this was caused by the GAPS diet; there were some other factors at work. But the point is that the GAPS diet did not stop that from happening, and didn't treat it.

So, someone could say that the GAPS diet did not work for us. But I think there are many valuable things about the diet that make sense.

1. Bone broth is very healing to the gut lining.
2. The elimination diet enables you to carefully monitor food intolerances
3. The food is very nutrient dense.
4. Fermented foods introduce good bacteria into the state of dysbiosis.
5. The specific carbohydrate aspect of the diet helps eliminate bad bacteria growth.

All these things sound great in theory, but for our family, something more powerful is needed. We are still looking.

Did the GAPS Diet work for you? If not, what other things did you use to improve your Crohn's disease?

D-Mannose - Not Just for Bladders Anymore

A recent Dr. Mercola article mentioned that d-mannose, a monosaccharide sugar, can not only remove bad bacteria from the bladder, but also from the digestive tract!

http://products.mercola.com/d-mannose-health-benefits/

He writes:

Could D-Mannose Benefit Your Gastrointestinal Health? 

*With D-mannose, many people first think of urinary tract health. However, this unique sugar may offer other potential benefits as well. 

 

Some studies suggest that D-mannose may be useful as a “prebiotic.” Prebiotics are substances that promote the growth of beneficial bacteria in your gut. The proper balance between “good” and “bad” bacteria is a prerequisite for both gut and overall health, so D-mannose may support your health by helping to raise levels of good bacteria.* 

Similar to how D-mannose works in your urinary tract, pathogenic bacteria are attracted to D-mannose on tissue cell membranes in your gut. D-mannose naturally occurs in the cells that line the walls of your urinary tract. 

There is also evidence that D-mannose may help protect against lectins in your gastrointestinal tract. Lectins are proteins found in beans, seeds, grains, and even some vegetables and fruits. They present a challenge to digestion because they are not broken down by stomach acid or digestive enzymes. 

Studies show that D-mannose may help bind and block lectins, and prevent them from reacting with and damaging your intestinal wall.*

So, if I am understanding this, it sounds like the d-mannose is removing the bacteria, and not killing it. This sounds like it would not cause the die-off that so many products cause. This sounds like some kind of miracle cure! 

In the past I have used d-mannose daily for months on end, and I have not seen an improvement in my symptoms from it. However, it does seem to work for bladder health, and can get rid of, and treat bladder infections for me.

So, the question is, what would be the appropriate dose that could make a difference in IBS or SIBO? This is not something I could find on the internet in any definitive form. But, one article said,  "In some lab studies and studies in mice, D-mannose components were shown to increase the growth of "good" bacteria. This suggests D-mannose may have some use for people with dysbiosis, an imbalance in good and bad bacteria."

Has d-mannose ever worked for you for intestinal health? What dosage did you use?