Self injurious behavior in autism patients with low calcium levels

Coping Ideas for Self Injury Urges, adapted from the book “Treating Self Injury, A Practical Guide,” by Barent W. Walsh, P.D., (2006).

Trigger warning for people with a history of trauma, self injury or other PTSD type issues: this post is about difficult topics and was difficult for me to write and to recover from writing. It may trigger uncomfortable feelings in readers but denial of issues doesn’t help anyone learn how to modify and control the issues for an improved quality of life and/or improved level of self control and safety from self injury. Sexual assault is also a difficult topic but self injury or the urge to self-injure can happen everyday.

Interestingly, Coleman (1994) studied a group of autistic children who had low levels of calcium (i.e., hypocalcinuria). These individuals often exhibited eye-poking behavior. When given calcium supplements, the eye-poking decreased substantially. In addition, language functioning improved.” [http://www.autism.com/symptoms_self-injury]

— secondary hyperparathyroidism perhaps?

For me secondary hyperparathyroidism can cause significant mental illness symptoms including a feeling of jittery thoughts and a jittery body, with a pent up feeling of needing to pop the bubble – ‘stabby’ feelings with a desire to self injure by stabbing myself. It is extremely unpleasant feeling and at times included a feeling of wanting to pop the eyes – gouge them out. Very unpleasant is an understatement, very dangerous to self is more accurate.

See below for a list of ideas for activities to try to take your mind off the self harm urges, and book reference written for health professionals rather than for a patient or parent – but help is help which can be life saving when needed.

Secondary hyperparathyroidism can be caused by low vitamin D or low calcium. My endocrinologist was extremely insistent that I take both vitamin D and calcium but over the years I had learned, with lab test proof, that my hormone D tends to be in the elevated end of the normal range. Irritability to an excessive level can occur at the elevated end of the range of hormone D. Lab test ranges are just based on the averages that are seen by the lab — and lab tests are usually ordered for sick people not for healthy people, so those lab test ranges are really the range of values seen in sick people not a range based on the average values seen in only healthy people.

I didn’t comply with the endocrinologist’s recommendation and found that just increasing calcium intake stabilized my level of parathyroid hormone and took away the ‘stabby’ feelings.

It is common for corticosteroid balance to be different from normal in patients with autism. [see link below] Vitamin D and hormone D are actually seco-steroids and the active hormone D acts somewhat like steroids in the body. Autism patients may be like people with obesity and many other chronic illnesses, that have been associated with low vitamin D but supplements weren’t found to be helpful for the various conditions. The problem may be more like mine where I have too much hormone D which is converted from vitamin D, and which leads to low levels of vitamin D. [http://www.preventmiscarriage.com/documents/Immunological-Considerations.pdf]

Vitamin D is carried on a transport protein that acts to keep it inactive. When free within the body the vitamin form is quickly activated to the hormone form. There are many more Vitamin D receptors throughout the body than there is usually  enough hormone D to activate them all during states of normal health.

Autism and other chronic diseases that seem to associated with low lab test levels of vitamin D may actually be reflecting a problem or deficiency in the vitamin D carrier protein rather than representing an inadequate amount of vitamin D being supplied from the diet or an inadequate amount of time spent in direct sunshine. Vitamin D is based on cholesterol and is not actually an essential vitamin in the way that other vitamins are essential because our bodies can make vitamin D from cholesterol when we get about 15 to 30 minutes of sunshine per day on our face, throat, and bare arms.

Magnesium baths help circumvent the problem elevated hormone D causes within the gastrointestinal tract — calcium is absorbed preferentially and magnesium deficiency can result which also can be a cause of significant irritability.

Providing nutrition education and individualized nutrition care in the public health sector is where I have training and experience. — ie giving away free information. Making money is not where I’ve had experience. And traveling has proven to be difficult for me with my various autoimmune and food sensitivities, but I care a lot about pain and suffering and mental anguish, in myself and others.

It is unpleasant to have to feel an urge to hurt oneself, and it is hard to control an internal explosive feeling that has nothing to do with how your childhood went — talk therapy is not much help if the problem is actually hyperparathyroidism. Multiply that internal jitteriness and explosive feeling by days, months, or years, and it is really much better to take calcium supplements and magnesium baths then to talk to a therapist about your childhood — while trying to control the urge to poke yourself in the eyes. (They don’t understand, and the endocrinologist didn’t either. Lab tests are just lab tests and mood symptoms are referred to a psychiatrist for mood stabilizing medications – in my (bad) experience.)

  • Autistic kids wash up happier in an Epsom salt bath, .
  • I describe my current Epsom salt bath routine towards the end of this post: Substance P, neuropathic pain, migraines, and the cannabinoid system,

The way “fair use for educational purposes” works is that the information is provided not for profit. I share information, which may contain excerpts from copy-righted works, in the hopes that some individuals or clinicians will find some of the information helpful, and to keep within the guidelines for fair use I don’t ask for donations or charge money for the information.

(Brief excerpts fit the guidelines better, the Autistic kids wash up happier post was a post from years ago, before I had learned more about fair use guideline. It contains an extensive excerpt from a much longer article, but it is very helpful information regarding some special dietary needs that are common among children with autism and which I also found helpful for improving my own diet. I have recently found that I have several genetic defects that are also commonly found in children with autism. One of them affects two important amino acids so that might be a problem that could affect my ability to make the vitamin D carrier protein – but I haven’t looked into that metabolic pathway yet.)

Ideas for activities to substitute if feeling an urge to self harm; from the book “Treating Self Injury, A Practical Guide,” by Barent W. Walsh, Ph.D. (2006) written for mental health counselors or psychologists:

https://www.guilford.com/books/Treating-Self-Injury/Barent-Walsh/9781462518876

  1. Negative Replacement Behaviors – a preliminary step, a substitution behavior that represents the typical method used – if actual self injury is already a problem. For example drawing a red mark instead of cutting, pounding a pillow or something else instead of hitting oneself.
  2. Mindful Breathing Skills – we tend to hold our breath in stressful situations and lack of oxygen makes rational thinking and self control more difficult.
  3. Visualization Techniques- visualize a happy place or memory or some other practiced calming scenario.
  4. Physical Exercise – use up the pent up energy in real exercise instead of mental or physical pain.
  5. Writing – journaling about things you are grateful for can help sometimes to see that life is worth it even though difficult too. Journaling about worries sometimes can help work through to solutions.
  6. Artistic Expression – art in many forms can help work out unspoken memories or feelings.
  7. Playing or Listening to Music – frequencies and rhythms can be healing or unsettling .
  8. Communicating with Others – phone a friend, counselor, or hotline or make a private audio journal.
  9. Diversion Techniques – escapist type behaviors to fend off or delay self injurious behaviors rather than try to feel that they must be confronted or solved immediately – just don’t want to deal with a band-aid right now so will draw a picture or go for a walk or call a friend – sometimes pausing is enough to let the urge fade.

* The capitalized techniques are from the book, the longer explanation is my interpretation or paraphrase of the book’s discussion of the topic. These notes are from notes I copied down years ago when I was having symptoms and hadn’t yet learned of the hyperparathyroidism condition.

“Treating Self Injury, A Practical Guide,” by Barent W. Walsh, Ph.D. (2006): https://www.guilford.com/books/Treating-Self-Injury/Barent-Walsh/9781462518876

The website provides a pdf link for a 25 page practical guide with Reproducible Materials for treating self injury. It includes client screening forms, safety contract, and an extensive section on breathing techniques for self calming. https://www.guilford.com/add/forms/walsh5.pdf

/Disclosure: This information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes./

*update 8/13/2022

 

For updating –

https://twitter.com/deNutrients/status/1101527023661522945

And what do osmomechanical stress, changes of temperature, chili powder, curry powder, ginger, Benicar, hormone D, steroids, and cannabinoids have in common?

// 7/1/16 addition: This post is for people suffering from Irritable Bowel Syndrome (IBS) which is not well understood, easy to diagnose or treat, and can be life threatening when more severe symptoms continue long term. The condition can continue for years or be a life long issue that flairs up at times and is less severe at other times.

Dietary tips can be helpful but why some foods seem to trigger symptoms while others don’s has not been well understood either. The common factor underlying why some foods seem to be triggers for many people may be the TRP channels that are found in cells throughout the intestines and actually in most cells of most life forms. //

So what do osmo-mechanical stress, changes of temperature, chili powder, curry powder, ginger, Benicar, hormone D, steroids, and cannabinoids all have in common?

They all may be able to overstimulate Transient Receptor Potential channels (TRP channels) within the gastrointestinal system and cause severe diarrhea in susceptible individuals.

In many cases, the activation mechanism of TRP channels is unclear (Figure 1), but known activators include specific agonists such as mustard oil (TRPA1) and capsaicin (TRPV1), an increase in intracellular Ca2+ (TRPM4, 5), temperature (heat: TRPV1, 2, 3, 4, TRPM4, 5; cold: TRPM8, TRPA1), mechanical or osmotic stress (TRPV4, TRPCs?) and phospholipase C (PLC) activation. TRP channel activity can be further modulated by intracellular phosphatidylinositol phosphates, such as PI(4,5)P2 and membrane potential, but also by inflammatory mediators, cannabinoids and steroids (Nilius, 2007; Rohacs, 2007; Nilius and Voets, 2008).” [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3012403/]

The TRP channels are a large group found in many species of life from yeast, to worms, fish and mammels. The agonists/activating chemicals for many of the types of TRP channels have not all been identified as of yet.

One type of TRP channels were formerly called Vanilloid Receptors, and are now called TRPV channels. Vanilloid Receptors were known to be activated by capsaicin found in hot peppers and chili powder. And more recent or less well known research has also found that they can be activated by cannabinoids and steroids, (see the link from the excerpt above), and osmomechanical stress.

Osmo-mechanical stress might be a precursor to edema, excess fluid in the extracellular space; if an organ or cell over fills with fluid it would mechanically be adding physical pressure to the organ or cell — and instead of popping like an overfull water balloon the TRP channels open in response to the physical pressure and let the excess fluid leak out into the extracellular space or into the area surrounding the heart for example. [http://www.ncbi.nlm.nih.gov/books/NBK92821/] Fibrotic heart disease would be adding mechanical stretching stress within the heart. TRP channels are being studied for possible use in preventing fibrotic heart disease. From that research article, we are told that changes in temperature may also activate them:

The activation mechanisms of TRP channel are highly diversified. Some TRP channels appear to be constitutively active, whereas others are activated by Gq-linked receptor activation, oxidative stress, changes of temperature, or an elevation of intracellular Ca2+ [126128]. All the TRP channels appear to be regulated by PIP2 [134137] .” [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874073/]

  • PIP2 = phosphoinositides = phosphatidylinositol phosphates (PIPs) = phosphorylated deriviatives of phosphatidylinositol (PI) [http://www.annualreviews.org/doi/abs/10.1146/annurev.cellbio.21.021704.102317]
  • PIP2 = phosphatidylinositol-4,5-bisphosphate and PI, and phospholipase C (PLC) from the first excerptare involved in cannabinoid metabolism within plasma membranes: [page 9 Kendall et. al., Behavioral Neurobiology of the Endocannabinoid System (Springer, 2009, New York)]

Steroids and hormone D function similarly. And Benicar and curcumin can function similarly to hormone D. And curcumin is a medically active extract from turmeric, a powdered spice that is a main ingredient in curry powder. Turmeric is made from the root of a plant that is biologically very similar to ginger,  which is also a root that is used as a dried spice or  may be used as a chopped vegetable in stir-fry dishes and other foods. Ginger has over 400 active phytochemicals, and one of them might be acting similarly to the curcumin — but that is speculation based on the similarity of symptoms of Irritable Bowel Syndrome that both ginger and curry powder stimulate.

Because — what else do osmomechanical stress, changes of temperature, chili powder, curry powder, ginger, Benicar, hormone D, steroids, and cannabinoids all have in common? — They all may irritate Irritable Bowel Syndrome, (IBS), for some people, along with emotional stress and other things like eating fructose in much quantity (example: from a piece of fruit or fruit juice) or gassy vegetables like cabbage and cruciferous vegetables and beans (gas would be adding mechanical pressure to those TRP channels which might be an over-active culprit in IBS patients).

  • The book, “Tell Me What to Eat If I Have Irritable Bowel Syndrome; Nutrition You Can Live With; Including Dozens of Healthful Mouth-Watering Recipes,” by Elaine Mager, M.P.H., R.D., includes dietary advice and other information about Irritable Bowel Syndrome (IBS). (Warning – most of the recipes contain gluten
  • Re corticosteroids and hormone D:  http://www.oapublishinglondon.com/article/1471

Other diseases that are not well understood but which involve edema and excess fluid entering the area between cells include Chronic Obstructive Pulmonary Disease (COPD) and Congestive Heart Failure (CHF).

So a lack of adequate potassium or magnesium might be involved in allowing too much calcium to enter the interior of cells where it can act as a trigger to increase the flow across the TRP channels even more.

A summary:

/Disclaimer: This information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes./

Hormone D is made from vitamin D

Vitamin D and hormone D are metabolically linked by one enzyme. Testing only the vitamin does not prove a deficiency of the hormone. There would be more children with rickets if the food supply or sunlight supply was inadequate in vitamin D or cholesterol. Statin drugs stop the liver from producing cholesterol so people taking statin drugs long term could be more at risk for low levels of both vitamin and hormone D. However they would also need to be avoiding sunlight, dairy products, egg yolks, some types of fish and other vitamin D fortified foods like breads and cereals.

If an epidemic of rickets isn’t a problem [3] then probably a reasonable amount of vitamin D has been available over the years. There is certainly an association between chronic disease and low vitamin D levels but it has not been adequately proven that low vitamin D is causing the chronic disease or whether it is a side effect of some other condition. It has been proven that the enzyme that converts vitamin D to the active hormone D is made in some types of cancer and autoimmune disease. There are two tests necessary to prove a deficiency of both the vitamin and the actual hormone D. It has been proven that excess hormone D can cause chronic degeneration from excess calcium leaving the bone tissue and it causes pain.

Two tests are needed to show whether there is deficiency of vitamin D or whether there is actually excess hormone D. The test for vitamin D levels doesn’t measure the amount that was converted into hormone D which is the form that signals bones to release magnesium and calcium from long term storage. It also signals the intestines to preferentially absorb more calcium than magnesium. Magnesium is inexpensive but it isn’t absorbed well when there is also a lot of calcium in the food or supplement or when there is excessive hormone D levels.
Two tests for D can show who needs further testing vs who needs supplements or diet guidance.The good news suggested to me, by the limited number of cases of rickets in comparison to the large number of people with low vitamin D levels, is that having both the hormone and vitamin levels tested would show who needs a vitamin and who might benefit from more testing for underlying issues.

Testing for chronic infection or cancer can catch treatable problems in much earlier stages of disease before osteoporosis or soft tissue calcification are allowed to happen. If the hormone level is elevated and the vitamin is low there can be a treatable reason why the enzyme between the two forms is overactive. Or sometimes there is an issue with too little activity by the enzyme that breaks down the hormone and too little enzyme activity allows the hormone to build up to excess levels.

Making too much active hormone D or not breaking down the excess can lead to worsening chronic disease over time. Measuring both the vitamin and hormone levels of D can show who needs a vitamin and who might need antibiotics or other treatment and who might be harmed by the use of excess supplements of D over time. So, yes, vitamin D is important and many people have been found to have low levels but we haven’t been measuring the level of the active hormone in many research studies and it is more powerfully active within health and illness.

Agribusiness and processed food are an essential part of the food supply. Improving food labeling would help people with food sensitivities or allergies to avoid risk without requiring all processed foods to change ingredients. Standardizing fortification levels helps with menu planning for a healthy diet for individuals and residential facilities.

Corporate profit and national viability is affected by the cost of health care and that won’t get cheaper if the same wrong solutions are pursued. One vitamin or medicine can never grow a body or give the body the nutrient building blocks that are needed for healing.
Multiple nutrients are necessary for preventing chronic disease and repairing health.

Recognizing that there is a link between elevated hormone D and low vitamin D will be important for the long term effectiveness of any health care system for any business or country. Pursuing vitamin D supplements as an easy solution to chronic disease has not been working and any one nutrient solution will not work to build health. Magnesium or iodine are not single answer solutions either. Vitamin K, selenium, zinc, vitamin C and B’s and the essential fats and phospholipids are necessary as well as adequate calories and protein.

Many nutrients working together help maintain quality of life and reduce pain and chronic degeneration. Basing health care on medical and surgical solutions alone can not solve or prevent all types of health issues. Those types of solutions are needed for acute repair but chronic degeneration needs prevention strategies and many nutrients working together within the body.
/Disclaimer: Information presented on this site is not intended as a substitute for medical care and should not be considered as a substitute for medical advice, diagnosis or treatment by your physician./

Reference List

  1. Canadian Medical Association Journal (2012, November 5). Low vitamin D levels linked to longevity, surprising study shows. ScienceDaily. Retrieved November 11, 2012, from [sciencedaily.com­] *The study control group had higher levels of vitamin D and had more chronic concerns. Low vitamin D levels is only important if there is also low hormone D levels.
  2. van Heemst D., Leiden Longevity Study, Longevity Research Background, in Dutch, [langleven.net]
  3. Lazol JP, Cakan N, Kamat D. 10-year case review of nutritional rickets in Children’s Hospital of Michigan. Clin Pediatr (Phila). 2008 May;47(4):379-84. Epub 2008 Jan 11. [ncbi.nlm.nih.gov] *The charts of 58 children with rickets diagnoses were found for a ten year time period at one hospital, 96% of them were exclusively breast fed and ethnicity suggests many may have hard dark skin tones which blocks sunlight production of vitamin D. Ideally vitamin D supplements would be recommended for exclusively breast fed infants during preventative nutritional counseling. So roughly 6 children per year at a large hospital with rickets – that is a much smaller number than “35% of American Children.” [4]
  4. Bener A., et al.,Vitamin D Deficiency as a Strong Predictor of Asthma in Children. Int Arch Allergy Immunol 2012;157:168–175 [content.karger.com] *The study participants were found to have lower vitamin D levels than the control group but they also were found to have lower magnesium levels and increased bone turnover levels which would suggest to me they actually had elevated hormone D but that wasn’t tested. Magnesium is cheap but it isn’t well absorbed if there is elevated hormone D due to some other unidentified issue. Vitamin D supplements and food were used by a significant number of the study participants.     Excerpt from this paper that is in reference to a different paper: “Litonjua and Weiss  [16] found that 35% of American children were vitamin D deficient and these children were at a greater risk of severe asthma attacks.
  5. Hashimoto Y, Nishimura Y, Maeda H, Yokoyama M. Assessment of magnesium status in patients with bronchial asthma. J Asthma. 2000 Sep;37(6):489-96. [ncbi.nlm.nih.gov] *The magnesium levels were similar between asthmatic and control groups in the serum blood test but the magnesium level inside of red blood cells was lower in the asthmatic group.