Tuesday, February 11, 2014

Still here

Just letting you all know that I am still here - and celebrating 5 years Low Dose Naltrexone for Hep C! And will be posting again soon - am waiting for a replacement computer. My other one's hard drive crashed during the summer and I have been struggling to use my 2003 Katrina soaked one. It takes 20 minutes to go from page to page on it and is extremely frustrating. Will be adding some new posts soon! Got new viral load test - 34,284 - which is great. Since 2009, it has never been above 48,000 - and either seems to be in the teens or @ 30-35,000. And has never made the jump back to the million+ that it was pre-LDN. Anyway, much more to come - still waiting on a computer!

Monday, September 30, 2013

Mr Magoo - Rest in Peace

My boy Mr. Magoo, was put to rest last Thursday at my vet's office. He fought a hard, cruel battle against Oral Squamous Cell Carcinoma - but finally lost it last week. Magoo was my friend, companion and child for the last 12 years and I miss him terribly. One day I will return to posting on this blog - back in June, I was so excited to write about my latest LDN labs until I noticed Mr Magoo drooling as he watched me type. That is when I found the awful tumor underneath his tongue. Nothing has been the same since then.

Thursday, August 29, 2013

8 Years Later

8 years ago at this moment, the water started coming into my apartment after the shoddy levees constructed by the Corpse of Engineers failed in 58 places. And my mind went into the surreal. Not sure that it ever came back. Of the original 8 cats that shared that time with me, most are still here. Panda and Brooks passed away due to illness and Mama Minx perished months after the storm due to the wild dog packs that ravaged our city streets. 5 of those cats spent two weeks up in a closet without food or water until I could find a man with a boat to bring me to rescue them. I had escaped the house the day after Katrina with 3 cats - Panda, Cayenne and Rosemary. Mr. Magoo, Brooks, Woody, Sky and Tortie Miss are the cats that lived in that closet - the same closet that I escaped the neck high waters in. Mr. Magoo was diagnosed with Oral Squamous Cell Carcinoma two months ago and despite multiple treatments (including LDN) the tumor continues to grow and Magoo is now struggling. It won't be long now until he must pass over to the Rainbow Bridge. But my thoughts today are for the 1800 mostly elderly people who died that day - along with the 100,000 animals who died because they were left behind - and the countless tens of thousands of other ones who drowned in the streets. All due to the failure of the flood walls built by the US Army Corpse of Engineers.
Levees.org Memorial Video

Friday, June 28, 2013

4 Years Normal Liver Tests using Low Dose Naltrexone for HCV!

4 Years Normal Liver Tests using Low Dose Naltrexone for HCV!

I started using 3 mg. Low Dose Naltrexone in Feb/March 2009 and got back my first labs in  June of that year.   My Hepatitis C viral load had been at 1,400,000 and my ALT was at 174 - AST AT 90.   After 3-4 months of being on the LDN, my viral load dropped down to 49,000 and my ALT was at 23 and AST at 30.  That is when I started recording my lab results and progress.

Since that time, every lab test has shown liver enzymes within the normal range (maybe a point off of normal) and my viral load has remained low.

I consider myself as a human guinea pig - or that I have been conducting my own "clinical trial" using LDN to treat my Hep C.  I have more or less been using the same 3 mg. dosage - sometimes taking it every night or as now, taking it every other night.  I have been getting the same prescription from Skip's Pharmacy for the entire time, except at the beginning when I used the prescription that I got from Dr. Berkson - and that pharmacy used lactose as a filler, which did not work for me.  Skip's uses Avicel.

I had new labs done last week and saw my great integrative doctor, Dr. Kashi Rai at "For Better Health."  She has been my doctor since 2007 and is the one who steered me towards Dr. Berkson.  Since then, she has prescribed the LDN as well as ordered whatever labs that I needed for my "trial."  She is also a genius at reading lab work and how to correct any imbalances by using mostly supplements and diet - she will also prescribe medications if the situation warrants - but that is not the case for me. She also suggested that I change my ALA from Metabolic Maintenance (Dr. Berkson's recommendation - or a European sourced Lipoic Acid)  to Jarrow Alpha Lipoic Sustain - 300 with Biotin.   I fought her tooth and nail over this as it would be almost a sacrilege to go against Dr. Berkson!  But, she said that she had seen terrific results in other patients labwork - so I started taking it last November - during the last few months, was only doing 1 daily.  New customers to iHERB can use this code for a discount:  KOV896  -   All labs done since 2007 via Quest Diagnostics:

                                                New Labs June 2013

                                   
                                          06/2013                                01/2009


Alpha Fetoprotein -               3.8                                          5.2

White Blood Cell count        5.0                                           6.0

Red Blood Cell count         3.82                                          4.21

Platelet Count                     149                                          186

Urea Nitrogen - BUN           12                                            9

Sodium                              136                                          138

Potassium                         4.3                                            4.6

Chloride                           103                                           103

Calcium                           10.2                                          10.5 (H)

Protein total                      7.2                                           8.9 (H)
Albumin                           4.9                                           5.2 (H)                                                                                               
Globulin                          2.3                                            3.7
Bilirubin                         0.6                                            1.1
Alk Phospatase              54                                              72
AST                              30                                             99(H)
ALT                              31                                             174 (H)

Ferritin                          83  (not been taking IP6)             115

Iron, Total                    122                                            165 (H) 9/2009
Iron Binding Capacity  308                                             352  9/2009                
Saturation                     40                                              36 9/09

HCV RNA                13.393                                        1,280,00

Lymphocytes Subset Panel

                                      06/2013                                09/2009

%CD3 (mature T cells)     76                                       77
Absolute CD3+ cells       1552                                    1008
%CD4(helper cells)          58                                       52
Absolute CD4+cells         1162                                   720
%CD8 suppressor t cells  20                                      24
Absolute CD8 cells          396                                    333
Helper/suppressor ratio    2.94                                  2.17
%CD16+CD56 NK cells   10                                      10
Absolute NK cells 16+56  207                                   128
%CD19 (b cells)               12                                     11
Absolute CD19+             248                                    134
Absolute Lymphocytes   2033                                  1308


TO BE CONTINUED!  bear with me folks - dealing with cat with cancer dx - and trying to post complete labs

Tuesday, June 18, 2013

Low Dose Naltrexone website - Why HCV is not listed?

I recently wrote to the folks who have the Low Dose Naltrexone site and asked why Hep C is not among the conditions listed that improve with the use of LDN. And this is what I was told:

We were delighted to hear of your excellent control of Hep C using LDN alone.   The reason why Hep C is not on our list relates to Dr. Bihari's past experience in his active practice (Bihari was the discoverer of the human uses of LDN). He did not have your experience with dozens of his patients who were being seen for HIV (and thus were all on LDN) but who also had Hep C.

He did use LDN in the therapy of Hep C, BUT only as a secondary treatment.Hypericin and LDN for Hepatitis C.

Hypericin and LDN for Hepatitis C

"In a study of St. John's Wort in 15 patients with HIV in 1990, Dr.Bihari had accidentally discovered a significant benefit to liver function in two patients with hepatitis B (whereas there was no improvement in HIV markers). Bihari then began to use St. John's Wort in his private practice to treat hepatitis B and hepatitis C - patients with the latter responded well, the former not at all. Since 1995, Dr. Bihari has been able to use a very highly concentrated form of hypericin, the active ingredient found in St. John's Wort, called HY2 (manufactured by Pacific Biologic in Clayton, CA; 800-869-8783) in the treatment of people with hepatitis C. It is given along with LDN, to enhance the immune response, and in many cases with ribavirin, as an antiviral. Over 60 patients have been successfully treated for hepatitis C in Dr. Bihari's practice. (but what does this mean?)

Dr. Bernard Bihari has put out the results of an interesting observational study he conducted through his practice in New York. The study involved fifteen people with Hepatitis C, seven of whom are also HIV+. Each day, participants took between 2 and 7 capsules of HY2 (depending on each person's ability to tolerate the HY2) and 3mg of naltrexone (ReVia), an opiate blocker. HY2 is a form of St. John's Wort, a naturally occurring herb. Hypericin, a chemical derived from St. John's Wort, has shown strong anti-viral activity in the test tube against a wide variety of viruses. Each capsule of the HY2 used by Dr. Bihari's patients contains 750mg of St. John's Wort, with a 220% increase in hypericin content (2.25mg hypericin) over standard St. John's Wort preparations. This same HY2 is available at the PWA Health Group.

Dr. Bihari has followed his patients for up to two years. In almost all cases, Dr. Bihari's patients' latest lab reports show normal or close-to-normal AST and ALT results. These tests measure the levels of enzymes produced by the liver. The elevated enzymes which all of the participants had at the beginning of the study are usually an indication of liver inflammation or damage. Many study participants were using milk thistle and/or thioctic (lipoic) acid, popular supplements that enhance liver function. Four participants added ribavirin to their regimens.

With these additional, varied therapies, and even the naltrexone, many questions remain. How much the HY2 contributed to people's successful drop in liver enzymes isn't entirely clear.

One person who stopped taking HY2 and took regular St. John's Wort instead showed an increase in enzymes until he went back to the HY2. When two other study participants stopped their regimens for a while, their enzymes shot up, then decreased again after going back on the regimen. We know that taking ribavirin alone can sharply decrease liver enzymes; but when you stop ribavirin, enzymes pop back up. The same seems to be true of HY2 and the other treatments Dr. Bihari's patients are using. It may be helpful to give your liver a break for a period of time.(?) But we don't know yet what will happen once these folks stop their regimen completely or whether anyone's virus will clear.


The experience was interesting but half of his patients were also coinfected with HIV and there really isn't much of a followup - I wonder if any of them achieved SVR? It doesn't seem so.  I wrote back to the LDN website folks to let them know that I was disappointed that LDN for HCV was not listed as a condition treatable based on Bihari's study on 15 people.

On another note,  George Henderson recently posted about Spirulina and how it brought about SVR in some HCV folks who were using it - I love George!!!!!   He is so far ahead of the rest of us.

Spirulina Platensis versus Silymarin in the treatment of chronic hepatitis C virus infection. A pilot randomized, comparative clinical trial.



Among the 30 patients who had been treated with Spirulina and completed the 6 months protocol, 4 patients (13.3%) had a complete end of treatment virological response. While 2 patients (6.7%) had partial end of treatment response defined as significant decrease of virus load of at least 2-log10 at the end of 6 months treatment. No virological response (non-ETR) (defined as no reduction of at least 2 logs10 from the baseline virus load) was reported in the remaining 80% of Spirulina treated group.   The High-fat Hep C Diet  


  So perhaps some of you might want to try adding Hypericin (and not just "regular" St. John's wart to their regimen along with Spirulina and report back? If I had the bucks, maybe I would again be the guinea pig as I have been with LDN - hell, with over 4 years of NORMAL LIVER ENYZMES and over 4 years of LAB RESULTS via QUEST LABS - and over 4 years of using the same 3 mg  capsules of LDN provided by Skip's Pharmacy -  I should qualify for a "clinical trial?"

Monday, June 17, 2013

Low Dose Naltrexone for Pets

 
                           



There is a yahoo support group called "LDN for Pets" - It has much info on using LDN for cats, dogs and horses - and I imagine other critters as well.

Dr. Skip (Skip's Pharmacy - one of the best LDN compounding pharmacy!) is part of the community and knows much about proper dosing.  And some of the members have much experience with using LDN on their own pets.

For those who are interested, the proper dose of LDN is very small and the formula is this:

.03 mg. x weight

BTW - one can obtain Naltrexone 50mg without a prescription via:

NaltrexoneRx.com

I had tried using LDN on one of my cats a few years back - I am not sure that it helped because I did not use it regularly on Panda - I had just started using it myself.  Plus, she had carcinoma of the ear that had already spread to her brain so it was probably already too late.   And indeed, if one does a search on the web for "LDN for Cats" there are a few folks who did try using it on their own cats.  With not much success - however,  all of the cats were already close to end stage in the various disorders that they had.   Again, LDN as a "last ditch" resort to a crucial problem - so many people have turned to it for the same reason - traditional medicine no longer works for them or never did.

New Orleans has become a very expensive place to live - we have the highest car insurance rates in the country - perhaps the world.  Our utitlities are sky high as well as water bills.  Housing is through the roof - no wonder we have such a high homeless rate here.

I have been struggling for years to get by - lately things have been really bad - and of course the time that a few of my cats have become quite ill.  And are now 12-15 years old.  I was able to take one cat to the vet and am still paying on the $207.00 bill.  My heart is breaking because Mr. Magoo has hyperthesia - he is very sensitive to touch and has ripped a lot of his fur out.  He needs desperately to go to the vet for labwork to try and figure out what underlying condition(s) might have brought this on.  He has always been on a high quality diet - with no grains whatsoever. And he was always a cat who loved the slicker brush and zoom groom - not anymore.   My holistic vet is trying to help - Magoo is currently on antibiotics (as are two other cats in the house) as well as homeopathic remedies - nux vomic and hypericum, which do seem to help him.

I made the decision to start him on LDN the other night -  I only gave him .01 mg the first night and upped it to .02 the next night - he is a big guy @14 pounds so his goal dosage will be 0.39 mg.  We will see how it goes. He seems a bit more nervous today so I will try every other night dosing at 02 for a time - see how it goes and then work our way up.  Hopefully, he will be able to have labs sometime soon.

Of course, I would recommend to everyone who wants to start their own pet on  LDN, to have labs done first and to let their vet know what you plan to do.   As I do not have enough money for toilet tissue at the moment, I cannot do it.  So I am using one of my last five 3mg LDN capsules to give to Magoo.   In a dark vial, dump in the capsule - add 3ml (same as mg) of bottled or distilled water - and shake.  Draw up required amount in syringe and give to pet.  Same if one has other strengths of LDN capsules or a 50mg tab - but use 50ml of water. Use the same amount of water as the mg of ldn used.  Keep in fridge - it will keep a long time.

I will update on Magoo's progress as we go along - I am hoping that it will help and that I am not too late in starting to treat whatever the poor guy has.  He is one of the 5 cats that survived for two weeks without food or water following the levee breaches after Katrina - all of those cats are heroes to me as well as being my "children"  -  I cannot tell you the stress and heartbreak that his illness has brought to me.   Again, the LDN is what has kept me going and I pray that it will do the same for Magoo.

NIGHTMARE -  Last Thursday, after noting that Magoo was drooling,  I pried open his mouth and found a nasty tumor underneath his tongue.  Extremely shocking and very sad finding - and after finally getting an appointment for him for exam and labs - this.   And feeling like an idiot that I did not see it earlier - I had been in his mouth 3 times daily for a couple of months.

Awaiting holistic vet's call - she briefly looked at it on Friday.  She wants to try and shrink it before doing anything else - trying Thuja - 1M and 50M.   Meanwhile, I let Magoo skip a couple of days of the LDN - I am so afraid of cell proliferation with this.   However, after spending hours upon hours reading about this insidious disease, and how almost all cases end badly,  I figure that Magoo has nothing to lose with the LDN.  Started over last night with 0.15 mg and will go to every night dosing of 0.20 tonight.  The less is more approach obviously did not work for him -  well, hopefully, we will know more once the poor guy has lab work -  I am devastated over this - Goo is my boy - a sweet sweet spirit.    Playing this poverty game might have cost him his life.

UPDATE JULY 5TH 2013

Vet visit for labs and xray show clean scans and normal liver & kidney function tests. Slightly enlarged heart and liver.   Elevated white blood cells because of UTI.   Tumor that looked red and ragged last week now looks more pink with smooth edges.  Vet thinks might have shot that it is lymph related and not SCC.  On antibiotics for 8 days and then see how he is - then, if still needed, go to another vet for biopsy.

Been syringing his mouth with calendula and grapefruit seed extract mixed with bottled water several times a day.  0.02 LDN almost every night.  Vet not thrilled but did write Magoo a script for liquid LDN that will be filled at Skip's Pharmacy.  And as Magoo weighs in at 15-16 pounds, his correct LDN dose is more like 0.45 mg.  But again, less is more with LDN, particularly in those with impaired liver function.  So keeping fingers and paws crossed that it is not SCC!!!!!!

Thursday, May 9, 2013

Ditch the Gluten!

Other than using Low Dose Naltrexone, eliminating gluten grains was the most helpful thing that I have ever done for my health.  As mentioned earlier on this blog, at one time I was almost house-bound due to horrible IBD (and chronic diarrhea in the mornings) - chemical sensitivities - fibro - and bloating to the point that I looked like I was expecting.  And even in my younger days, I refused to wear two piece bathing suits as I always had a "puffy tummy" despite being fit and thin.  

Below is a great site and a great article by Nora Gedgaudas - it has been published in her book as well as in the Wellness Journal - this is from her blog.

Just what is Gluten, anyway?



Gluten (the Latin word for “glue”), is a substance found in numerous grains such as wheat (durum, semolina, spelt, kamut, rye, triticale and barley). It is typically present in oats, too, due mainly to modern processing methods. Small amounts of gliadin-related compounds and gluten contamination are also present in corn products and corn starch. All foods with any form of gluten content should be considered suspect. This includes all cereal grains such as wheat/triticale/durum/semolina/spelt/ kamut (gliadin), rye (secalin), barley (hordein), corn (zein) and oats (avenin). What is called “gluten” is actually made up of hundreds of peptides. The only one actually tested for is gliadin, which itself is made up of twelve different fractions. The only fraction of gliadin currently tested for is alpha-gliadin, which leaves considerable margin for error in the form of false negatives. If you happen to be sensitive to a fraction of gliadin other than alpha-gliadin then you will likely test negative for “gluten sensitivity”. This is deeply problematic. Gliadin in some form exists in most grains. Wheat, durum, spelt, tritiale, baley, and rye are members of a family of grains having the most pronounced antigenic effects on those sensitive to gluten, though all grains (including rice) contain some form of gluten. The gluten in these other grains may or may not be significantly problematic, though a general avoidance of dietary grains for numerous reasons (outlined in detail in my book, Primal Body-Primal Mind) is probably a good idea.

Gluten, used in baking it gives bread dough its elasticity and baked goods their fluffiness and chewiness. It is also used as an additive and stabilizing agent in innumerable processed foods and personal care products. Insanely, gluten is nearly everywhere. Laws do not require its labeling on all products so the consumer is left to judge for themselves whether gluten may be an additive or not. I, personally, don’t trust any product that isn’t clearly labeled “gluten free”.

For us humans, where we have spent nearly all of the last 2.6 million years as hunter-gatherers, gluten (and its closely related compounds) is a very new inclusion to the diet and is very difficult for us to digest. To say that gluten can add complications to your health is putting things mildly. Problems with gluten are becoming literally epidemic and although public awareness about this issue is certainly growing there is more that is poorly understood by most than not. The consequences of gluten sensitivity (diagnosed or undiagnosed) can literally be lethal. And, no, I am not being “extreme” when I say this. The consequences are very real.

Although commonly associated with celiac disease many do not appreciate gluten’s potentially incredible impact on the health of countless individuals or the commonality with which people may be afflicted with non-celiac “gluten sensitivity”. In fact, gluten may well be at the silent root of a great many of the health challenges millions of people face today, both physical and mental. It is rarely suspected as the underlying culprit in most instances, however. Furthermore, the inherent presence of what are called exorphins in grains (morphine-like compounds) make gluten-containing grains quite addictive and leave many in frank denial of the havoc it can wreak (including also quite possibly my “mystery critic”).

Allow me to elaborate:


A 2009 study in the Journal of the American Medical Association (JAMA Sept 16; 302(11):1171-8) found that those with celiac disease and/or gluten sensitivity, whether diagnosed or undiagnosed had a significantly higher risk of death, particularly from heart disease and cancer. It is currently estimated (conservatively) that one in every 200 people suffers from celiac disease, a devastating consequence of gluten-containing grain consumption. Some more recently hypothesize that this number may be closer to one in 30. Gluten “sensitivity” (vs. celiac disease) is considerably much more common and is currently nearly epidemic in its scope. The effects of and markedly increased mortality risks associated with both full blown celiac disease and gluten sensitivity happen to be virtually identical. Both are autoimmune conditions that create inflammation and immune system effects throughout the body. They can affect all organ systems (including your brain, heart, kidneys, etc.), your nervous system, your immunological functioning, your digestive system and even your musculoskeletal system. –Almost literally everything from your hair follicles down to your toenails and everything in-between. Exposure to gluten in a sensitive individual essentially shuts down blood flow to the prefrontal cortex—the part of our brains that allow us to focus, manage emotional states, plan and organize and exercise our short term memory. The prefrontal cortex is our brain’s “executive function” control center and is the part of our brain that basically makes us the most human. The inflammatory response invoked by gluten exposure additionally activates the brain’s microglial cells, which have no built in inhibitory mechanisms and do not readily wind down again. It can literally take months. Additionally, these periods of hypoperfusion followed by reperfusion can be quite damaging (much the way heart muscle cells typically die following reperfusion after the ischemia of a heart attack). The damage and neural degeneration this can cause over time, together with sympathetic (“fight or flight”) nervous system over-arousal can be significant. The damage and neural degeneration this can cause over time, together with sympathetic (“fight or flight”) nervous system over-arousal can be significant.

In routine blood tests, seeing chronic states of anemia (serum iron below 85 ug/dL and hemoglobin below 13.5), functionally depressed or elevated serum protein levels (below 6.9 or above 7.4 G/dL), unusually depressed triglycerides (below 75 mg/dL–especially where carbs play a significant dietary role) and/or alkaline phosphatase levels (significantly below 70 U/L), functionally depressed BUN (below 13 mg/dL), abnormally high HDL (in excess of 75 mg/dL) and/or chronically (even functionally) elevated liver enzymes, among other chronic inflammatory and malabsorptive markers although not diagnostic here can be cause–especially when found in combination with one another–for possible suspicion. It takes further testing to be sure–though even some of the best testing methods can vary greatly in their accuracy.

Gluten can also be looked upon somewhat as a bit of as “gateway food sensitivity”. It is known to increase an enzyme in the body known as zonulin, which controls intestinal permeability. Elevated zonulin levels in the presence of gluten can also serve to allow other types of undigested proteins to slip past what would otherwise be more selectively permeable barriers and cause additional immunological reactions to other foods. Casein (milk protein) is the most common co-sensitivity with gluten, but the immune system can come to react to almost anything if gluten consumption persists. This can be a very real problem. Once multiple food sensitivities take over it can amount to a very vicious cycle that only worsens with time and becomes extremely difficult to correct. Living with this can be miserable at best.

A study published in 2009 in the peer reviewed journal, Gastroenterology (July;137(1):88-93) compared 10,000 available blood samples from individuals 50 years ago to 10,000 people today and found that there has been a 400% increase in the incidence of full blown celiac disease (defined by conventional medicine as a total villous atrophy of the small intestine)! Changes made to American strains of wheat, giving them much higher gluten content is likely a significant part of the problem. Increased genetic susceptibility due to a variety of causes is likely another. According to the Journal of Gastroenterology fully 30-50% of all people carry the gene for celiac disease (known as HLA-DQ8 or HLA-DQ2)–and eight times more people with celiac disease have no GI symptoms than do. Gluten sensitivity genes are significantly more common (HLA-DQB1, Alleles 1 and/or 2).

Gluten containing grains include wheat (e.g., durum, graham, semolina, kamut, spelt), as well as rye, barley, oats and triticale. Although oats technically are not part of the gliadin-containing family of grains, modern methods of processing nearly always ensure gluten contamination of oat products and the presence of actual gluten should always be assumed unless labeled “100% gluten free”. The prolamin (avenin) content of oats, however, still makes them at least potentially suspect for inherent sensitivity issues.

Fully 99% of those who suffer from this entirely curable and potentially lethal condition do so completely unaware of the dangerous vulnerability within themselves. Although a biopsy of the small intestine is commonly used to diagnose celiac disease, fully seven out of ten celiac sufferers exhibit no intestinal or GI symptoms at all. In fact, an article in the journal Neurology (Vol 56/No.3 Feb 13, 2005) states that “Gluten sensitivity can be primarily and at times exclusively a neurological disease”, affecting not only the brain and nervous system directly, but also cognitive and psychiatric illness. In the Journal of Neurology, Neurosurgery and Psychiatry (1997; 63; 770-775) an article states “Our finding…implies that immune response triggered by sensitivity to gluten may find expression in organs other than the gut; and the central and peripheral nervous systems are particularly susceptible.”

A 2002 review paper in the New England Journal of Medicine (Jan 17; 346(3):180-188) found that fully 55 diseases are known to be caused by gluten. These partly include heart disease, cancer, nearly all autoimmune diseases, osteoporosis, irritable bowel syndrome, as well as many common psychiatric illnesses, partly including anxiety issues, ADD, bipolar disorder, depression dementia, schizophrenia, Hashimoto’s (autoimmune thyroid disorders), migraines, epilepsy, Parkinson’s, ALS, neuropathies (having normal EMG), and most other degenerative neurological disorders…as well as Autism, which is technically an autoimmune brain disorder. In my opinion, it is always safest to assume the presence of gluten sensitivity in these populations, or frankly wherever significantly compromised health is an issue.

Testing for gluten sensitivity


Although there are numerous methods for assessing gluten sensitivity and/or celiac disease, most are unfortunately somewhat unreliable in their accuracy (including the so-called “gold standard” approach of intestinal biopsy), which may be partly why so few are properly diagnosed even when testing is sought out. With respect to blood and salivary testing, out of 12 different sub-fractions of gliadin, for instance, typically only one—alpha-gliadin—is ever tested for. If you happen to have a sensitivity for any of the eleven other forms of gliadin it might not ever show. False negatives are a notorious part of this type of testing, unfortunately. Accuracy (where negative results are concerned) is never 100%. Immunoglobulin testing for food sensitivities in those with autoimmune disorders and particularly Hashimoto’s are almost always skewed due to chronic imbalances of TH-1 (T-cell) and TH-2 (B-cell) immune response. It’s critical to look for multiple markers (although the overwhelming—nearly 100% association between gluten sensitivity and Hashimoto’s and most other autoimmune disorders make the automatic assumption of gluten sensitivity a good idea). The most important tests to run are IgA (anti-gliadin antibodies and anti-entomysial antibodies), IgG (anti-gliadin antibodies), IgM, antibodies, tissue transglutaminase antibodies, which is most associated with small intestine villous atrophy (IgA and IgG), gluten antibodies, total IgA antibodies and if possible, always test for the presence of genes’ HLA-DQ2 and HLA-DQ8, as well as HLA-DQB1, Alleles 1 and 2. I’ve seen individuals test negative for antibodies in blood, salivary and even the most accurate stool antigen tests (again, false negatives are quite common) but they then test positive for both pairs of celiac or gluten sensitivity genes…meaning one can basically take the diagnosis of celiac or gluten sensitivity to the bank. I’ve found that by far the most accurate assessment may be made by using a proprietary stool antibody test from EnteroLab (www.enterolab.com). Their Web site also contains extremely helpful information on the subject and includes accurate testing for other major common food sensitivities as well. Getting the additional genetic markers for gluten sensitivity and predisposition potential for celiac disease that they offer helps minimize false negatives. In time, there will likely be new and hopefully even more accurate diagnostic methods developed as studies demonstrating the devastating health impacts of gluten mount. For now, EnteroLab seems to have the best corner on the market for accuracy, demonstrating a six-fold greater accuracy rate than available blood antigen tests. Otherwise, elimination diets, and/or testing for multiple markers using blood sampling are probably the next best bet.


In October of 2010 a new standard of excellence in testing for gluten sensitivity via affordable salivary panels covering not one but ALL fractions of gliadin–with an unprecedented 92-96% accuracy rate–will become available via Cyrex Labs (www.CyrexLabs.com). To quote the site, itself, “Cyrex™ is an advanced clinical laboratory developing and offering cutting-edge tests based on the latest scientific advances in the field of immunology. These tests cover mucosal, cellular, and humoral immunology and specialize in antibody arrays for complex thyroid, gluten, and other food-associated autoimmunities and related neurodysregulation.” Make no mistake about it, Cyrex Labs WILL revolutionize the entire field of immunology.

Elimination diets can be an effective means of determining the potential for gluten sensitivity, but must be strictly adhered to for no less than 2-3 weeks and ideally at least 6-8 months to make a genuinely clear determination. Avoidance of gluten must be no less than 100% from all (even hidden sources) and not so much as even a single crumb of bread or trace contamination. Also, beware of cross contamination issues—where non-gluten foods may come into contact with gluten-containing foods via cooking/preparation surfaces and utensils in restaurants or at home (yes—this matters). The inflammatory effects of even trace gluten exposure in the brain especially and throughout the body can reverberate fully 6 months or more in sensitive individuals. Any exposure of any kind (even seemingly innocuous unintentional slip-ups) means you must start over with the time spent on the elimination diet. Sorry to sound so dramatic, but this is an issue that needs to be taken extremely seriously. Gastroenterology (2009; 137:88-93) states that “During a 45 year follow up, undiagnosed celiac disease was associated with a nearly 4-fold increased risk of death. The prevalence of undiagnosed CD seems to have increased dramatically in the United States during the last 50 years.” In an individual with either full blown celiac or gluten sensitivity the risk of death from all causes, according to the journal Lancet (Vol 358, August 4, 2001) was dramatically greater: “Death was most significantly affected by diagnostic delay, pattern of presentation, and adherence to the gluten free diet…Non adherence to the gluten free diet, defined as eating gluten once-per-month increased the relative risk of death 600%.” Next time you want to rationalize that “one little piece of bread” –think twice.

Being “mostly gluten free” or imbibing in gluten-containing foods “only occasionally” just doesn’t cut it. In the case of diagnosed or undiagnosed gluten sensitivity or celiac disease the popular mantra of “all things in moderation” can literally be deadly.

Brain and mood disorders, migraines, osteoporosis, diabetes, cardiovascular diseases, bowel diseases, autoimmune diseases, inflammatory disorders and cancer are rampant. Grains are rarely suspected as the original culprit, though every one of these disorders, among many more, can potentially be traced to often-insidious gluten intolerance. Gluten sensitivity is only rarely obvious to the afflicted, and many are even entirely surprised to learn they have this sensitivity. I know I was.

Only an estimated 1% of all suffering gluten sensitivity or celiac disease is ever diagnosed.

The good news is that the devastating symptoms of gluten sensitivity and celiac disease are often entirely curable. –The treatment solution? You MUST eliminate 100%–not just “most”–gluten from your diet, including not just gluten containing dietary grains but all hidden sources, as well, which can include (but are not limited to) soups, broths, processed food mixes and soy sauce, teriyaki and other sauces, corn products and corn starch, and salad dressings. Even buckwheat and soy flours are commonly contaminated with highly significant amounts of gluten due to modern processing methods. Gluten can be cryptically listed on food labels as vegetable protein, seitan, hydrolyzed vegetable protein, modified food starch and others. Gluten is even an ingredient in many shampoos, cosmetics and lipsticks (which can potentially absorb transdermally–through the skin), children’s Play-Doh, medications, vitamins (unless specifically labeled “gluten free”)–even non self-adhesive stamps and envelopes.

Although I realize all this need for ultra-strict avoidance sounds rather tedious and extreme, an article in the Journal of Neurology, Neurosurgery and Psychiatry (1997; 63; 770-775) states clearly: “Even minute traces of gliadin (gluten) are capable of triggering a state of heightened immunological activity in gluten sensitive people”, meaning prolonged inflammation and other symptoms. Saying you’ve eliminated “most” gluten from your diet is a bit like saying you’re just “a little bit pregnant”. Either you are or you’re not. There are NO in-betweens. Avoidance must be strict…and total.

Many people will claim they have been adhering to a strict gluten-free diet when, in fact, they have only been avoiding the obvious sources and really haven’t been paying attention enough to potentially hidden sources, including their personal care products. They will eventually rationalize their lack of positive health results to the idea that they weren’t gluten sensitive after all and they simply go back to eating whatever they want. This is a HUGE mistake! Even where adherence to a genuinely gluten free diet doesn’t seem to generate expected turnarounds in health and well being, you have at least removed one very major hurdle to improvement. There can always be other hurdles yet to conquer, not the least of which is the task of winding down GI/neurological inflammation and healing intestinal permeability (the subject perhaps of another article yet to come). Gluten is by far not the only modern substance challenging the health of the masses. Restoring health can be like peeling back the layers of an onion. It is a process. Still, often enough, by simply removing this one major dietary antigen the turnaround in some people can seem nothing short of miraculous. It can also make a massive difference where seemingly more benign issues like resistant weight loss may be concerned.

Wait just a minute, back up—did you just say “personal care products”? What???

Crazy sounding, but true. You need to examine your shampoos, conditioners and other hair care and skin care products for the presence of wheat protein, sometimes also listed as “hydrolyzed vegetable protein”. Look for corn-related additives, also.
While you’re at it, you might also want to consider avoiding toxic additives like parabens, pthlates, artificial fragrances, sodium laurel sulfate, methylisothiazolinone (MIT), and petroleum derivatives like mineral oil, toluene, petrolatum and paraffin (slightly off-topic, but extremely noteworthy, nonetheless). Note that the FDA does nothing to ensure the safety of any chemical used in personal care products, so you’re left to trust the manufacturer. Even the FDA states: “Cosmetic products and ingredients are not subject to FDA premarket approval authority, with the exception of color additives … Cosmetic firms are responsible for substantiating the safety of their products and ingredients before marketing.” Out of roughly 126 or more chemicals consumers regularly apply to their skin, 90% have never, ever been tested for their safety. Most people think nothing of the products they apply on their hair or skin and the cosmetics industry readily capitalizes on this ignorance at tremendous potential cost to your health for considerable profit.

Why is this important? I mean, we’re just talking about skin, right? It’s not like you’re drinking the stuff…

In fact, it’s probably worse.

Keep in mind that your skin is your largest organ and that it is exceedingly thin (less than 1/10th of an inch in thickness) and permeable. If you were to eat or drink these products you’d have several things come into play to help protect you from direct bloodstream exposure—your gut lining, hydrochloric acid, enzymes, etc. In a hot shower, however, with your pores open wide, there is very little between you and direct absorption of anything you are applying to your scalp and skin right into your bloodstream where it is all free to travel throughout your body to your brain and all your other organs. These compounds may also even be inhaled with the shower’s steam. The concern here is very real. When you’re reading hair and skin care labels it’s a good idea to ask yourself whether you would be willing to actually drink the contents of that product or not. If you’re reading a list of a whole lot of difficult-to-pronounce chemicals and/or also seeing wheat protein/vegetable protein on the label you’d do well to think twice about using it. –And don’t let buzzwords like “organic” or “natural” fool you. A partial listing of product sources can be found at www.celiac.com. Another source for allergen-free hair and skin care products is www.gfsoap.com. Just Google “gluten and additive-free hair and skin-care products” in your computer’s browser. The potential selection is huge. If you happen to have a smart phone there are also numerous available “gluten-free apps” available to help you screen individual products, restaurants, grocery stores and other shopping sources at your fingertips. The good news is that the awareness of these issues is rapidly spreading and resources are likely to grow exponentially in the very near time to come.

So what about gluten-free “substitutes”?

Seeking out gluten-free substitutes is certainly an option, as there are scores of “gluten-free” products of all kinds available today. It’s big business for food manufacturers these days, in fact. Clearly, gluten free shampoos and cosmetics are a good and necessary idea. Unfortunately, even though other grains, such as quinoa (actually more of a starchy seed than a grain), corn, millet and buckwheat or rice do not contain the same gluten as wheat, they are still more a source of starch than of protein and the majority of “gluten-free substitutes” are highly, highly processed foods. Many are soy-based, as well (don’t get me started on THAT!). Just because something is “gluten-free” does not mean it is actually healthy for you, anymore than the word “organic” does. Gluten and carbohydrate intolerance, in general, are far more the rule than the exception in today’s world. It is logical to conclude that grain consumption, especially gluten-containing grains, just isn’t worth the dietary risk, given our culture’s innumerable health challenges and vulnerabilities. Why play Russian roulette? Why add to the unnecessary, glycating, fattening and neurotransmitter and hormonally dysregulating carbohydrate load? In my view it’s better to take processed food off the radar screen entirely and stick to the foods that don’t need a label you have to read every time.

In short, there is no one alive for whom grains are essential for health and gluten, in particular, is a health food for no one.

It stands to further reason that the more symptoms a person has physically, cognitively or psychologically, the more primitive a diet (in other words, pre-agricultural or “Primal”), one ought to consider adopting for reclaiming rightful health. The commonality of degenerative diseases does not make these diseases a normal part of aging, or even remotely inevitable.

The choice is mostly ours.

For more information about gluten sensitivity and celiac disease go to www.celiac.com.

For the most accurate testing and more information go to: www.enterolab.com or www.cyrexlabs.com.

Primal Body Primal Mind