Celiac disease as a manifestation of Munchausen by proxy.

Abstract: In typical cases of Munchausen by proxy maltreatment, a mother feigns or produces illness in her child. Her primary goal is to accrue emotional gratification, and no mental disorder better accounts for the behavior. We present the first published case in which the principal manufactured ailment was celiac sprue. In addition, a panoply of other ailments ranging from seizures to behavioral abnormalities was reported. The case is also very unusual in the involvement of the paternal grandmother and, to a lesser extent, the paternal grandfather as the perpetrators. Although definitive intervention to protect the child occurred only after 7 years had passed, multidisciplinary teamwork ultimately resulted in a successful outcome for the child, who is now doing well.

**********

Munchausen by proxy (MBP) is defined as the intentional production or feigning of physical or psychological signs or symptoms in another person who is under the individual's care. (1) Its complexity and uniqueness is illustrated by the fact that it can manifest as physical abuse, emotional abuse, sexual abuse, physical or emotional neglect, educational neglect, or a combination of these. Regardless, the perpetrator's principal goal in all cases is emotional satisfaction, which can stem from garnering attention and nurturance; mobilizing attention as an indefatigable, even heroic care-giver; expressing rage or jealousy that is sometimes displaced from other people onto the child; or controlling others--including high-status professionals such as physicians who become unwitting "professional participants." (2), (3) In contrast, malingering involving children (so-called "malingering by proxy" (4) ) involves the pursuit of external goals such as disability payments or opioid medications. (1) In representative cases of MBP, the perpetrator of the medical and/or psychological abuse is the mother and the victim is her child. (3)

Although reports have been published in which other gastrointestinal ailments, such as pseudo-obstruction, (5) bleeding, (6) and intractable diarrhea (7) have been fabricated, we present what we believe to be the first reported case in which MBP was manifested through false claims of celiac disease. The case is also very unusual in that the primary perpetrator was the child's paternal grandmother and the paternal grandfather was actively complicit at times. Only three other published cases (8), (9) involving grandmothers as perpetrators were uncovered on a search of the MEDLINE, PsycINFO, and MD Consult computer databases, and there have been no previously published reports involving a grandfather.

Conclusions

Celiac disease (also termed gluten-sensitive enteropathy or celiac sprue) is a chronic intestinal malabsorption disorder caused by intolerance to a protein found in wheat, rye, and other grains. (10) It manifests itself primarily through gastrointestinal symptoms such as nausea, vomiting, cramping pain, and diarrhea. Treatment involves excluding gluten from the diet, a step the grandmother never took despite her claim that A had celiac disease.

This case highlights the fact that even this relatively obscure ailment can form the nidus for MBP. It also illustrates several other points often seen in cases of MBP: 1) children can be co-opted into manufacturing symptoms to support the deceptions; 2) diagnosis of MBP can be delayed for years; 3) given cases can involve reports of both physical and behavioral signs and symptoms; 4) ongoing medical care is likely to be misdirected unless it is made contingent on access to all outside medical records; 5) an enforced separation from the alleged perpetrator can be essentially diagnostic; and 6) the perpetrator may be someone other than the child's mother. In contrast to Warner and Hathaway's (11) report that caregiver "obsessions" with food intake by their children necessarily constitute MBP, we emphasize that the diagnosis has merit only when, as in this case, the caregiver engages in the willful deception of others.

In all cases of MBP, (12) teamwork among the expert, the child protection agency, the attorney, key medical and other health care personnel and, as indicated, law enforcement is essential during the process of confirmation or disconfirmation. Such teamwork was invaluable in A's case: MBP would never have been identified nor A protected long-term had each individual or entity engaged in an independent evaluation that mirrored the fragmented medical care the grandmother, with the grandfather's help, deliberately crafted in this case.

Great thanks are due to Nature for putting into the life of each being so much healing power.

--Johann Wolfgang von Goethe

Accepted July 30, 2002.

Copyright [c] 2004 by The Southern Medical Association 0038-4348/04/9701-0067

References

(1.) American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition--Text Revision (DSM-IV-TR). Washington, DC, American Psychiatric Association, 2000, ed 4 text rev, pp 739-740, 781-783.

(2.) Zitelli BJ, Seltman MF, Shannon RM. Munchausen's syndrome by proxy and its professional participants. Am J Dis Child 1987;141:1099-1102.

(3.) Ostfeld BM, Feldman MD. Factitious disorder by proxy: Clinical features, detection, and management, in Feldman MD, Eisendrath SJ (eds): The Spectrum of Factitious Disorders. Washington, DC, American Psychiatric Press, 1996, pp 83-108.

(4.) Feldman MD, Rosenquist PB, Bond JP. Concurrent factitious disorder and factitious disorder by proxy. Double jeopardy. Gen Hosp Psychiatry 1997;19:24-28.

(5.) Cucchiara S, Borrelli O, Salvia G, et al. A normal gastrointestinal motility excludes chronic intestinal pseudoobstruction in children. Dig Dis Sci 2000;45:258-264.

(6.) Mills RW, Burke S. Gastrointestinal bleeding in a 15-month-old male: A presentation of Munchausen's syndrome by proxy. Clin Pediatr (Phila) 1990;29:474-477.

(7.) Johnson JE, Carpenter BL, Benton J, et al. Hemorrhagic colitis and pseudomelanosis coli in ipecac ingestion by proxy. J Pediatr Gastroenterol Nutr 1991;12:501-506.

(8.) Feenstra J, Merth IT, Treffers PD. A case of Munchausen syndrome by proxy [in Dutch]. Tijdschr Kindergeneeskd 1988;56:148-153.

(9.) Godding V, Kruth M. Compliance with treatment in asthma and Munchausen syndrome by proxy. Arch Dis Child 1991;66:956-960.

(10.) Ciclitira PJ. AGA technical review on celiac sprue. American Gastrointestinal Association. Gastroenterology 2001;120:1526-1540.

(11.) Warner JO, Hathaway MJ. Allergic form of Meadow's syndrome (Munchausen by proxy). Arch Dis Child 1984;59:1511-1156.

(12.) Feldman MD, Lasher LJ. Munchausen by proxy: A misunderstood form of maltreatment. Forensic Examiner 1999;September/October:25-27.

RELATED ARTICLE: Key Points

* In representative cases of Munchausen by proxy (MBP) abuse, a mother deliberately deceives doctors and others into believing that her child is physically and/or emotionally ill.

* Years may pass before physicians realize that the illnesses have been fabricated or induced.

* This is the first case to report fabricated celiac disease as the main manifestation of MBP and the first to report that the perpetrators were the paternal grandparents acting jointly.

* A key component of detection is the finding that the child's health improves during separation from the suspected perpetrator.

* A multidisciplinary, multiagency approach assists with MBP confirmation, intervention, and ongoing child protection. These cases are uncommonly prosecuted criminally.

RELATED ARTICLE: Case Report

In the months before A's birth, the paternal grandmother was successful in isolating the mother from her relatives, systematically engaging in behaviors to demoralize the mother and to significantly lower her confidence as a future parent. For instance, the mother was told that her being beaten by her husband was "her fault." Within 2 months of A's birth, the mother placed him in the care of his paternal grandparents because she felt she could not care for him appropriately amid her marital strife and personal depression. From shortly after the placement until child protective services intervened when A was 7 years old, the paternal grandmother took him continually to doctors. She claimed mainly that he suffered from unremitting celiac disease with severe diarrhea but at various times also alleged that he had cerebral palsy, seizures, increasing "brain atrophy," bladder dysfunction, and "disruptive behaviors." Based on this information, A's doctors performed an immense array of tests and procedures. The procedures, both office- and hospital-based, included at least five endoscopies, two renal sonograms, a barium enema, a voiding cystourethrogram, a colostomy, a repair of the colostomy, and the placement of a feeding tube. A also received powerful prescription medications from numerous physicians, each unaware of the other's role.

A's grandmother, with the paternal grandfather's acquiescence, withheld him from school of any kind, alleging that his 30 bowel movements a day made school attendance impossible and mandated his wearing pull-up diapers despite the colostomy bag. Home schooling was arranged but state-mandated supervision of the teaching program was discontinued when the grandmother falsely informed the sponsor, a church academy, that A's death was imminent. Regardless, she had failed to send in the required samples of his work, voiding the arrangement. She later stated to academy personnel that A was attending regular school. In reality, he was not permitted to play with other children and his physical activity was as limited as his education. On one occasion, the grandmother convinced a minister to pray with the child to accept his coming demise.

The grandparents told the child from birth onward that they were his parents, his father was his brother, and his mother was merely a family friend. By leveling false accusations, they were able to convince a court that secrecy should be maintained about their true relationships to A. The grandmother routinely lied about her education, claiming to be a nurse with the special training needed to care for sickly A. The efforts of A's mother to regain custody were dismissed because the grandmother, again through deliberate falsification, contended that the mother had been viciously physically abusive to A and was addicted to drugs and alcohol.

After reports of suspicions by treating personnel and review of case information by a MBP expert, the state assumed custody and arranged to have A admitted to a tertiary care hospital. There, the inconsistencies between the grandmother's reports and the child's physical and emotional status were irrefutable, and the child improved remarkably. Additional observation, testing, and review of records proved that A had never suffered from celiac disease. The seizures, cerebral palsy, and other purported abnormalities had never been witnessed by anyone other than the grandmother. In addition, it was confirmed that A had surreptitiously been administered laxatives. The feeding tube was removed and the colostomy reversed without incident. All medications were discontinued.

The MBP expert provided the emphatic opinion that the paternal grandmother had deliberately fabricated and induced A's ostensible physical and behavioral problems. The grandfather had generally quietly acquiesced but was more actively deceptive at times. The expert added that the MBP was manifested as physical abuse, emotional abuse, educational neglect, and physical neglect, and detailed case recommendations were provided. A pervasive pattern of deliberate planning, deception, and manipulation made it obvious that a central goal of both grandparents was the satisfaction of taking the child as away from his birth parents, raising the child as their own, and undermining and punishing the biologic mother. In addition, the grandmother delighted in the attention and sympathy she received through the illusion that A was seriously ill. Her grandson thus became an "object" through which she could satisfy her own emotional needs.

The expert also noted that A occasionally faked symptoms on his own. For instance, he was happy and playful during an interview, but instantly grimaced and clutched his abdomen when told that the interviewer understood him to have stomach trouble. When distracted by a toy, he was again smiling and interactive.

Subsequently, a family court affirmed the finding of MBP and terminated the grandparents' rights even to supervised visitation. The state placed A with foster parents who were educated about MBP, and he was enrolled in public school where he now enjoys vigorous outdoor activity and has been described as "a picture of health." He is toilet-trained and is thriving physically. He is receiving additional tutoring due to the educational deficits caused by his lack of schooling and is making remarkable scholastic strides. No medical record of A's ever having been formally diagnosed with celiac disease or any other disorder has been uncovered. The grandmother dismissed the sudden improvement upon separation from her as "a miracle performed by God," though she had previously rebuked religion and church attendance.

Louisa J. Lasher, MA, and Marc D. Feldman, MD

Both Ms. Lasher (Conyers, GA) and Dr. Feldman (Birmingham, AL) are in private practice.

Reprint requests to Marc D. Feldman, MD, 4116 River View Cove, Birmingham, AL 35243. Email: [e-mail]