F.E.A.S.T's Around The Dinner Table forum

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Emily

Background

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.

 

The Request

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

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Foodsupport_AUS
Sorry that your daughter continues to struggle. So many of our kids have various intolerances. My D also had lots of colic as a child and reported frequent abdominal pain issues as a child, well before ED as well. 
Your question reminds me of one of the presentations at the recent ICED conference, where a presentation was made on veganism in eating disorder recovery. I had always been of the mind that this ill advised, but this particular speaker pointed out that by turning people away because of not meeting their requirements - they may be causing people to go several years without treatment, there are studies for that.  Her talk completely changed my thinking on this subject. There are lots of provisos she uses for continuing treatment with dietary restrictions, but as she points out, if the difference is getting someone into treatment or not, you are better off finding a work around even if the restriction is part of their ED. It then should be repeatedly challenged down the track as other parts of recovery come together. For your daughter, as you say some of this may be ED, but it seems as though by not being willing to look at  some dietary changes, so long as the meal plan is complete, they are dooming your daughter to not have treatment. 

The dietitian presenting works in the US but is Melbourne Australia born and raised.  I guess could always be worth trying a contact to see if can open up more pathways for your D. Her name is Ms Melainie Rogers and she works at Balance Eating disorder treatment center. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Emily
Thank you very much for this lead. I will explore further.  It sounds like Melanie would support our experience and what we want to see happen for our d.  
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melstevUK
Hi Emily,

Sorry for what you are going through and fir all these obstacles which are being put in your way. 
Personally I am of the view that there is no problem with restrictions in a diet as long as the patient is getting all the required nutrients and calorific intake.
I know a girl who has made a great recovery on a vegan diet which was not allowed when she was in hospital. 
Your d has long standing digestive problems which need to be worked round. I hope you can get the support you need to help with your d's recovery 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Foodsupport_AUS
Yes I think she would support this. The idea of meeting people where they are at, puts some clinicians off, and of course there is always a risk that the eating disorder is in part in charge. That being said no treatment is almost certainly worse, so it makes sense to acknowledge the differences, work with them and move on. It may mean your daughter would need to choose least worst options - for example to make sure all micro and macro nutrients are covered there may be a need to look at some foods and choose the one that is least likely to cause issues. I hope you hear back from Melainie. Given she is from Australia she may even know people much closer to home. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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