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Stranded Without Her Mom

Journal of Gluten Sensitivity Autumn 2012 Issue


Image: CC--ap220859

Celiac.com 09/15/2017 - In Pennsylvania, there is a six-year-old little girl (we'll call her Amy) who has not been allowed to see her mother (we'll call her Cindy) since June 21st because Amy's dad takes issue with a diet that excludes gluten and other allergenic foods. You might think that this is due to a dispute arising out of the dissolution of a marriage, but that is not the case. However, I'm getting ahead of myself. I need to start describing this situation as it began about six years ago, when her father was arrested for public drunkenness, resisting arrest, and creating a public disturbance, when Amy was less than a year old. Dad (we'll call him Steve) struggled with unemployment and part-time employment as a truck driver, falling further and further into arrears on his child support payments. Cindy had primary custody, and every second weekend, Steve took care of Amy.

Conflicts between Cindy and Steve quickly arose over the dietary restrictions mentioned above. Cindy wanted Amy to be healthy and she thought she could achieve that goal by allowing her to eat only wholesome foods, excluding cow's milk, gluten, soy, tree nuts, and refined sugar. She made these choices partly because she observed better behavior in Amy when she excluded these foods, partly because she observed gastrointestinal symptoms, including abdominal bloating, when Amy ate these foods, and partly because Amy tested positive for IgE antibodies against tree nuts, and other testing, conducted after Amy was on a diet that had already excluded these foods, showed mildly positive results for gluten, cow milk, and soy. Who can say how strongly Amy would react to these foods if she were eating them on a daily basis?

However, Steve apparently does not believe in such diets or testing. He refused to cooperate with the prescribed dietary restrictions despite a court ordering him to do so. This court order had been in place for four years, yet when he testified in court, asserting that he had been following the diet for Amy, he could not even say what gluten is, or what foods contain gluten.

Not surprisingly, despite the court's provision of visitation rights for Cindy, Steve has found one excuse after another to refuse Cindy access to their daughter, since gaining full custody based on a deeply flawed claim that Cindy has Munchausen's syndrome by proxy (MSBP). My comments, of course, only represent one side of the story. However, most of us who follow a gluten free diet have, at some point, had to deal with similarly resistant attitudes, although they are not usually taken to such extremes.

After years of support payment delinquency and non-compliance with court orders, Steve showed up in court on June 21st, with legal counsel, a psychiatrist's report asserting that Cindy has MSBP, and claiming that he has a full-time job and is therefore able to support Amy, despite long standing arrears on his child support payments to Cindy. Where did all this money come from to pay for these expensive representatives and expert reports? And how is it that Steve overlooked bringing his child support payments up to date before paying these other expenses? Further, Steve is demanding child support payments when he has yet to pay up his own arrears.

The court took away her daughter based on a flimsy report that accused Cindy of Munchausen's Syndrome by Proxy. At that time, Cindy was not allowed to defend herself or speak on her own behalf. She was not even allowed to read the report that accused her of MSBP! The judge has also sealed the record so Cindy cannot get a copy of it! It appears that she doesn't have a right to face her accuser.

One of Steve's experts ignored the fact that Amy was only getting gluten on every second weekend, at the time she was tested, and asserted that Amy's mildly positive test results for food sensitivities to gluten, soy, and cow's milk were somehow meaningless. (This may also be rooted in the currently contested value of IgG food allergy testing, which would fill another article.) The psychiatrist asserted that Cindy's dietary restrictions for Amy indicate that Cindy has Munchausen's syndrome by proxy and that Cindy is therefore abusing Amy with this diet. The most insane part of this whole scenario is that any of the many Paleodiet advocates, including S. Boyd Eaton, M.D., professor Loren Cordain, Ph.D., professor Melvin Konner, M.D., Ph.D., and professor Staffan Lindeberg, M.D., Ph.D. would endorse this diet as almost universally healthful. Many low carbohydrate advocates, such as professor Stephen Phinney, M.D., Ph.D., professor Jeff Volek Ph.D., R.D., and professor Jay Wortman, M.D., would similarly approve this diet as providing a much more healthful start for this child than the conventional American diet that most American children her age are eating. Some of these Paleodiet and low carbohydrate experts have raised their own children on similar diets because of the health benefits such eating habits confer. Do they have Munchausen's syndrome by proxy too?

Let's take a look at this diet, one element at a time. Cindy wants her daughter to avoid refined sugar. Not only is it unhealthy, Cindy believes that Amy's behavior deteriorates when consuming refined sugar, and the work of all of the above scientists supports Cindy's concerns. One research group, Fiorito et al, showed that sweetened beverage consumption at age five predicts lifelong elevated sugar consumption, and both current and future adiposity (1). With obesity looming as one of the greatest health challenges facing Americans today, it is little wonder that Cindy is concerned.

Relatedly, the Center for Science in the Public Interest (CSPI) quotes Marion Nestle, chair of the Department of Nutrition and Food Studies at New York University, as saying, "Because sugary foods often replace more healthful foods, diets high in sugar are almost certainly contributing to osteoporosis, cancer, and heart disease" (2). Similarly, Mohammad Akhter, the executive director of the American Public Health Association stated that "Health officials must take prudent action to stem the dilution of the American diet with sugar's empty calories" (2). The CSPI offered these and other statements from a number of health experts and organizations in their petition asking the U.S. government's Food and Drug Administration (FDA) to require labeling that would specify the sugar content of beverages and processed foods. They also want the FDA to provide guidelines that will recommend a limit on daily consumption of refined sugars, just as they do with vitamins. There can be little doubt that refined sugar is an important and pervasive health threat to Americans. Certainly the reduction or exclusion of refined sugars provides no basis for legitimate criticism of Cindy's exclusion of this harmful food substance from Amy's diet.

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Cindy also wants Amy to avoid soy. Some evidence suggests that chronic ingestion of soy-derived genestein induces chromosomal imbalances in epithelial cells of human breast tissues, thereby increasing one's risk of developing breast cancer later in life (3). Further, soy, as with many other legumes, contain high concentrations of several types of anti-nutrients. Soy protein isolate, a very common processed food additive, has the highest saponin content of all legumes, at 10,600 mg/kg (4). These saponins can damage and penetrate the membranes of almost all human cell lines. This is the means by which they penetrate the intestinal mucosal barrier, enter the circulation, and damage red blood cells, inhibiting their capacity to carry oxygen (4). Soy is also very high in phytate content. Phytates bind to iron, calcium, zinc, and magnesium, forming a bond that cannot be broken by human digestive processes or enzymes. The net result is that when soy is consumed, much of the important trace minerals from other foods consumed at the same time are wasted in one's fecal matter rather than being absorbed through the gut enterocytes (5).

The impact of soy-derived phytates alone may not be sufficient to induce deficiency in the context of a mineral-rich diet. However, children often experience trace mineral deficiencies during growth spurts, and soy consumption would serve to accentuate these deficiency states (5). Similarly, the approximately 20% of the protease inhibitors in soy that survive cooking (assuming that all soy is cooked prior to consumption) incite the pancreas to increase production and excretion of protease enzymes, particularly trypsin. This particular protease induces increased intestinal permeability. Soybean lectin also increases intestinal permeability. Both combine to cause a leaky gut and an increased risk of developing additional food sensitivities. Also, soy isoflavones impair iron metabolism (4). Clearly, there is no good reason to question Cindy's dietary choices for Amy based on her exclusion of soy.

Cindy also wants to protect her daughter from the health hazards of cow's milk, which is both a very common allergen and has long been reported to induce iron deficiency in infants and young children (5). This latter may be the result of the high levels of bio-available calcium in milk. Calcium competes for the absorptive mechanisms that also moves, zinc, magnesium, and iron into our circulation (5). Zinc is critical to healthy function of the innate immune system. Magnesium serves in a wide range of processes that aid the healthy development of a child's body. And iron is critical to a child's intellectual development and wellbeing (5).

Milk has also been implicated in causing or raising insulin resistance, acne, and a host of hormonal abnormalities. Some evidence suggests that these problems are caused by the hormones in cow's milk and their impact on our hormonal receptors and our own hormonal production (4). These harmful hormones from cow milk include bovine insulin, insulin-like growth factor 1, and estrogen, all of which have been shown to impact on human health (4). Further, soy and dairy proteins are both numbered among the eight most allergenic foods in the U.S. food supply, along with tree nuts and wheat (4). Cow milk allergy alone is estimated to afflict "from 2 to 3 percent of children between the ages of one and three" (4). Milk has also been implicated in some cases of asthma. Others argue that the health benefits of dairy consumption outweigh the detriments. However, "a 2007 meta analysis from the Harvard School of Public Health reported that high calcium intake had no therapeutic effect on hip fractures in 170,000 women and 68,000 men" (4) p. 102.

Now let's look at gluten. Most research regarding the impact of a gluten free diet has only examined its impact on children with celiac disease, who almost universally benefit in learning and behavior from gluten avoidance. However, a gluten free diet has also been shown, in the context of a test group of 533 children, to improve school readiness among 100% of children with celiac disease, 86% of those with non-celiac gluten sensitivity (as measured by IgG and/or IgA antibodies against gliadin) and among at least 43% of gluten insensitive patients who attended a pediatric gastroenterology practice in New Zealand, between 2001 and 2005 (6). Others have reported, in the absence of celiac disease, significant reductions in the number and severity of learning disabilities following a six months trial of a gluten free diet (7). Still others are now reporting that non-celiac gluten sensitivity is an important clinical condition (8) and that this newly recognized clinical condition may be accompanied by consequences as dire as those found in untreated celiac disease (9). Long standing evidence, and considerable new research combine to support dietary exclusion of gluten for from 12% to 40%+ of the U.S. Population (10, 11).

We are forced to wonder exactly which facet of the diet Cindy is trying to keep Amy on could suggest a condition of Munchausen's syndrome by proxy? This is a condition that is defined by the fabrication of symptoms or symptoms induced by the caregiver. I can understand someone who is not well versed in recent nutritional research claiming that this is a harsh and restrictive diet. However, the health benefits such a diet confers are far greater than the inconvenience it imposes. It is a completely benign diet that only offers benefit to the child. And, after repeated demonstrations that he has little regard for court orders that do not suit him, Steve now has custody of this young child, and he is blocking her mother and Amy from spending time together. That behavior alone says a great deal about just how concerned he is about the welfare of this child.

The MSBP diagnosis is largely based on Steve's claims that he never saw any symptoms related to the foods to which Cindy believes Amy is allergic/sensitive when Amy was with him. However, in the short term it is quite likely that she did not display any signs or symptoms, especially for those symptoms caused by the opioids in gluten and dairy (12). Cindy would be dealing with the withdrawal symptoms in the first week or so after Amy returned home from a weekend with her dad, but not while being fed those opioid-containing foods (13, 14, 15).

I understand that MSBP mothers can cause their children a great deal of harm. I also understand that such a diet would be a huge undertaking for someone like Steve, who doesn't believe in such things. However, for those of us who have experienced the miraculous improvements that come with the kind of healthy diet that Cindy is insisting on for Amy, this harmless diet only offers improved health and development. To suggest MSBP on the basis of this diet reflects a gross level of ignorance on a dietary level. It also says a great deal about the current state of Medicine and the field of Psychiatry that a practitioner could construe such a diet as suggestive of any mental illness, unless independent thinking is now a diagnostic characteristic of one of the maladies defined in the Diagnostic and Statistical Manual of Mental Disorders IV (DSM IV).

Sources:

  1. Fiorito LM, Marini M, Francis LA,Smiciklas-Wright H,Birch LL. Beverage intake of girls at age 5 y predicts adiposity and weight status in childhood and adolescence1,2,3 Am J Clin Nutr. 2009 October; 90(4): 935–942. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744622/ 
  2. http://www.cspinet.org/new/sugar.html
  3. Kim YM, Yang S, Xu W, Li S, Yang X. Continuous in vitro exposure to low-dose genistein induces genomic instability in breast epithelial cells. Cancer Genet Cytogenet. 2008 Oct 15;186(2):78-84. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2590788/
  4. Cordain L, The Paleo Answer. Wiley & Sons. Hoboken, NJ, 2012 p. 72 -147
  5. Hoggan R, The Iron Edge . Waterside Works. Calgary, Canada. 2008.
  6. Ford R, Hoggan R, Fung T, Marini A. School readiness paper - unpublished data
  7. Blair A, Wheat-free diet gives food for thought: A school claims dyslexic children show astonishing improvements with special meals The Times, June 12, 2004 http://www.timesonline.co.uk/tol/news/uk/article444290.ece
  8. Carroccio A, Mansueto P, Iacono G, Soresi M, D'Alcamo A, Cavataio F, Brusca I, Florena AM, Ambrosiano G, Seidita A, Pirrone G, Rini GB. Non-Celiac Wheat Sensitivity Diagnosed by Double-Blind Placebo-Controlled Challenge: Exploring a New Clinical Entity. Am J Gastroenterol. 2012 Jul 24.
  9. Anderson LA, McMillan SA, Watson RG, Monaghan P, Gavin AT, Fox C, Murray LJ. Malignancy and mortality in a population-based cohort of patients with coeliac disease or "gluten sensitivity". World J Gastroenterol. 2007 Jan 7;13(1):146-51.
  10. Braly J, Hoggan R, Dangerous Grains. Penguin/Avery, NY. 2002
  11. Davis W, Wheat Belly. Rodale, NY. 2011
  12. Fanciulli G, Dettori A, Demontis MP, Tomasi PA, Anania V, Delitala G. Gluten exorphin B5 stimulates prolactin secretion through opioid receptors located outside the blood-brain barrier. Life Sci. 2005 Feb 25;76(15):1713-9. Epub 2004 Dec 20.
  13. Yoshikawa M, Takahashi M, Yang S. Delta opioid peptides derived from plant proteins. Curr Pharm Des. 2003;9(16):1325-30.
  14. Horváth K, Gráf L, Walcz E, Bodánszky H, Schuler D. Naloxone antagonises effect of alpha-gliadin on leucocyte migration in patients with coeliac disease. Lancet. 1985 Jul 27;2(8448):184-5.
  15. Schick R, Schusdziarra V. Physiological, pathophysiological and pharmacological aspects of exogenous and endogenous opiates. Clin Physiol Biochem. 1985;3(1):43-60.

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3 Responses:

 
AWOL cast iron stomach
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said this on
15 Sep 2017 9:08:26 AM PDT
Ouch and a somewhere in this a little girl is dealing with much psychological stress this situation is causing her in addition to the potential allergens/sensitivities. Hmmm maybe food sensitivities run on Dad's side and they are also affecting his behavior and mood as well. rnrnWhat a mess. Sad, sad, mess for all involved. rnrnSo based on the article am I to believe Cindy was diagnosed with MSBP without actually sitting down with the physician herself for assessment but indirect assessment ?rnrnWow

 
Cristina
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said this on
18 Sep 2017 8:27:51 AM PDT
I think this article says less about food allergy concerns than it does about the animosity between grown adult(s) during divorce. Many marriages end poorly and those involved take it out on the children to punish those on the opposite side. It's sad that this little girl is not able to see her mother. I also question how it is possible that the mother was diagnosed with MSBP without her permission or an examination by a psychiatrist? Whatever the facts of the case, it sounds like this little girl would be a pawn no matter what the circumstances. The father just latched onto the dietary restrictions as a way to have his day in court.

 
Jeff
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said this on
18 Sep 2017 1:00:57 PM PDT
"Cindy was not allowed to defend herself". This statement is not plausible. Even in situations where the court system is totally corrupt, which definitely happens, people are allowed to defend themselves. Any competent lawyer can assure that this happens, and I do not believe that she was denied the right to a lawyer. Obviously, the diet described in the article is a healthy diet to follow and Cindy and Amy were screwed by the system, no doubt due at least partly to unscrupulous judges and lawyers. But, making such ridiculous claims makes the whole story suspect. In any case, I am not sure the point of the article. It would seem that the only constructive purpose would be to try to reverse the legal decisions so that Amy would eat a healthy diet and see her mother like children are supposed to do. But, the identities are not revealed in the article, so this worthy purpose cannot be achieved.




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