Food sensitivities or eating disorder?

[Rhyo9]

My daughter was admitted to the hospital for intractable vomiting and weight loss, was misdiagnosed with an eating disorder and transferred to an eating disorders unit. While there, the results of her antibody test for Celiac came back positive, they did an upper endoscopy and biopsy and guess what - she has Celiac. They still insist that she has Avoidant Restrictive Food Intake Disorder (ARFID) since she keeps throwing up. But she's been obviously glutened once and perhaps not so obviously other times. Also, I suspect that she may have developed some food sensitivities. She does not have anxiety around eating, etc.

I guess medical people are still skeptical of food sensitivities? I'm pretty sure she is sensitive to peanut butter, as she throws it up pretty much immediately every time.

Any insights on food sensitivities would be appreciated.

[cyclinglady]

Many, many celiacs have other food intolerances.  The most common one is lactose intolerance.  Since food sensitivity tests are not very accurate, keeping a food journal can help identify food intolerances (which many or may not resolve with healing from celiac disease).

https://www.beyondceliac.org/SiteData/docs/Food Sensi/97aba03fccee664a/Food Sensitivities by Susan Linke.pdf

[knitty kitty]

Rhyo9, 

Sorry to hear about your daughter's illness.  She tested positive for Celiac Disease.  Many Celiacs have vitamin and mineral deficiencies when first diagnosed because Celiac Disease causes malabsorption which results in malnutrition.

Intractable vomiting can be a symptom of a vitamin deficiency.  Thiamine (vitamin B1) deficiency, niacin (B3) deficiency, B12 deficiency, Vitamin D deficiency, magnesium and potassium deficiencies may cause vomiting.

I hope your daughter is doing better and that you'll keep us posted on her condition.

 

On 8/7/2019 at 4:01 AM, Rhyo9 said:

My daughter was admitted to the hospital for intractable vomiting and weight loss, was misdiagnosed with an eating disorder and transferred to an eating disorders unit. While there, the results of her antibody test for Celiac came back positive, they did an upper endoscopy and biopsy and guess what - she has Celiac. They still insist that she has Avoidant Restrictive Food Intake Disorder (ARFID) since she keeps throwing up. But she's been obviously glutened once and perhaps not so obviously other times. Also, I suspect that she may have developed some food sensitivities. She does not have anxiety around eating, etc.

I guess medical people are still skeptical of food sensitivities? I'm pretty sure she is sensitive to peanut butter, as she throws it up pretty much immediately every time.

Any insights on food sensitivities would be appreciated.

 

[Rhyo9]

Oddly enough, her blood tests showed good overall nutrient status*, which is perhaps why the doctors did not put Celiac high on the list of possibilities. It took almost 2 weeks to get the results of the antibody test and in the mean time they subjected her to what's called an 'aggressive re-feeding protocol' designed for anorexics. They made her eat a large ('bolus') meal, which she would then throw up, then she was to drink 16 oz of meal replacement drink (Ensure), which she then threw up, and then they pumped meal replacement in via an NG feeding tube at 400mL/hr, and she threw that up, too. This went on for a few days.  It was awful. Of course, the food contained gluten since we did not know she had Celiac.

She's home now and gaining weight rapidly, though still dependent on drinking Ensure in addition to meals for extra calories (she can't eat a large volume at once) and still on Zofran. We see an integrative doctor Monday after next, hopefully he will be able to offer us some real help.

Thanks much for your kind words and concern.

 

* Poor nutrient status is also supposed to be a sign of ARFID, so it would seem her test results are evidence against that diagnosis. Also, she never missed a menstrual period (though her cycles were longer than usual (~32 days)) - to me that's evidence against an eating disorder diagnosis.

[RMJ]

So glad to hear that she is gaining weight rapidly! Some doctors just don’t like to admit that someone has celiac disease and/or food sensitivities.

[cyclinglady]

I was never deficient in vitamins or minerals with the exception of iron which was blamed on menstruation for years.  I had some pretty severe intestinal damage too.  

Happy to hear that she is doing better!