Our daughter has an enduring eating disorder (over 10 years now).
Since birth, d has had severe and chronic digestive difficulties.
The evidence to support this includes:
- The worst colic in our circle of friends and associates.
- Colic resulted in pain and distress 24/7, literally, for 18 months.
- During childhood, continued to show extreme intolerance (including chronic pain) to wheat, gluten, lactose and numerous other foods.
- In early teens GP guided us through process of elimination diet that confirmed intolerance to numerous foods.
- Strong family history of such intolerances.
- Allergy and intolerance tests over the years have been inconclusive and unreliable.
ED was not present in d life in these times.
Now, when d seeks treatment for EDs, clinicians do not accept her history on food intolerances. Clinicians require current allergy tests before they will accept consideration of food intolerances in any meal plan.
Here is the kicker:
- When d eats these foods as required to undertake any allergy or intolerance tests, we know she will experience chronic intestinal pain.
- Many of the tests are inconclusive/unreliable
So d understandably won’t do them. And yes, there is probably an element of the ED voice supporting this decision.
We also know d is right about the foods she wants excluded from any meal plan. We have lived with this her whole life.
Clinicians are understandably concerned the ED is creating this behaviour.
Clinicians are concerned, we as her family, are enabling the disorder by supporting her position on food intolerances without current clinical testing, despite being as educated on EDs as any family in the country and probably more than a number of clinicians.
i am in discussion with a representative of a respected ED treatment provider in our city, and they are open to evidence of alternative effective approaches to the issue of digestive difficulties.
Can you please refer me to:
- Any papers on treatment of ED, especially AN, of people with pre ED digestive disorders
- Any clinics or clinical practices, that address the needs of people with pre ED digestive disorders.
- Respected practitioners who can advise on this issue
- Anything else you think might be useful.
Thank you in advance