Does anybody have experience with ARFID?

[AngieW in Texas]

My 21yo has not been diagnosed but it fits them very well. Neither of us had ever heard of it before until a few days ago.

I was also like that all the way up until partway through my freshman year in college when suddenly all those foods that had previously been so repulsive to me that I couldn't even look at them suddenly didn't cause that reaction anymore. But I had a lot more foods that were safe than my 21yo does. I have no idea why my food block suddenly went away. 

Complicating the issue, my 21yo has food allergies and OCD. We had always chalked up the food issues to that combination but ARFID makes a lot of sense.

There is very little they can eat outside our home. 

They have tried for years to expand their diet and have been only marginally successful. I tried all the same strategies with no success until my block suddenly went away.

 

[Terabith]

Weirdly, until I was in college, I had random bouts of nausea regularly, and I was really careful about not eating too much or what I ate because of it.  The smell of scrambled eggs or bacon were horrible.  And then when I was about 19, it all went away overnight.  

On the other hand, I gained a lot of weight when I wasn’t having to constantly battle nausea and think about how much I ate.  So there’s that.  

Sorry.  No helpful advice.  Just sympathy.  That’s gotta be awful, and with food allergies and OCD, it makes it really seem logical.  

[ktgrok]

the word "safe" makes me wonder if you mean the child feels other food isn't safe, and that would sound more OCD. But if you mean in a different sense, maybe? I'd say my neice has this but she's not underweight. She eats only a few foods. and it isn't picky like normal kids - she won't eat candy, cake, cookies, etc either. Only one brand of rice and beans, two types of macaroni and cheese, and the meat from lunchables. Sometimes pizza without cheese, or french fries. Oh, and grapes. That's it. 

[Guest]

I know a child DX’d with it, but they turned out to have celiac, so I think a lot of the anxiety and food avoidance started with the fact that eating some things caused pain. It ended up being hard to DX the celiac because they were doing so well at avoiding gluten-but also avoiding a lot of things that would have been fine (possibly due to a reaction due to cross contamination years ago, and then avoided ever since). It actually took an eating disorder clinic/specialist to recognize that there actually was a medical issue.

[ktgrok]

1 hour ago, dmmetler said:

I know a child DX’d with it, but they turned out to have celiac, so I think a lot of the anxiety and food avoidance started with the fact that eating some things caused pain. It ended up being hard to DX the celiac because they were doing so well at avoiding gluten-but also avoiding a lot of things that would have been fine (possibly due to a reaction due to cross contamination years ago, and then avoided ever since). It actually took an eating disorder clinic/specialist to recognize that there actually was a medical issue.

And kids with celiac have damage to the intestines that makes it hard to digest other food as well - often they don't produce digestive enzymes like lactase, etc so foods that have no gluten can still cause pain. 

 

[ktgrok]

And not to throw it around every time anything comes up, but a classic PANDAS symptom is anorexia/refusal to eat, usually coupled with OCD relating to swallowing or choking or vomiting (but not always with that), or food not being safe, etc. 

Food refusal was our biggest sign with my son. 

[AngieW in Texas]

My 21yo also has Ehlers Danlos, which can cause digestive issues.

The feeling of a food not being safe isn't about taste. It's about texture. There are some foods that are right on the edge between what they can and can't handle. Some foods they love the taste of, but can't eat because of the texture.

[wonderchica]

I’ve received treatment for ARFID as an adult. I don’t have any of the other medical diagnoses previous posters mentioned 😊 Treatment was very helpful for me and was done by a team including physicians, dieticians, occupational therapists, and behavioral therapists. A team approach with professionals with lots of experience is essential I think. Feel free to PM me with any specific questions.

Edited December 24, 2019 by wonderchica