eating disorder or porphyria?

[justwanttohelp09]

My niece is being tested for porphyria. I have read up on the disorder, but could not find any reference to severe pain after eating. She gets severe pain in her abdomen and extreme burping after eating. Then she goes in and out of a "faint" for 45-60 mins, alternating with panting and belching, and waking up to moan and scream, then slump over again. When she comes to, she is very confused, doesn't know her own mother, where she is., etc. Then she will snap out of it, and cannot remember what she ate. She will giggle about it. I suspect an eating disorder. Does any of this sound familiar to anyone? Would love some insight.. Thanks.

[justwanttohelp09]

I don't mind at all. I'm not entirely sure my niece's problems are not ED related though. She has had bouts of bulimia in the past, and I am concerned that if this is not organic in nature, as most of her dr.s have said, it is psychological. I think she has some unresolved childhood trauma that she has internalized, as well as anger issues. I suspect she could have eating issues as well as psychological ones. I am trying to get feedback from as many angles as possible. Thanks.

[Porpher]

Do you mind if I move my answer of this to the neurology forum, as it is off-topic here?

[justwanttohelp09]

When you had symptoms as a teen, how long would you say it lasted? My niece has had daily episodes since Dec. She still passes out everyday, always after eating, or during eating. She can feel it coming on, and needs help getting to a chair or couch before she falls. She cannot be left alone, or go to school. Eating high carbs and glucose drinks has not helped. She doesn't have red pee, but only goes a couple times a day(?). Two doctors have tested her and both said negative for porphyria. She has not had genetic testing done yet, and we don't know of any family history of it. She is going to see a nephrologist tomorrow, I'm not sure what he plans to do, but he thought her symptoms sounde like porphyria. I know she did have the 24 hour urine test, so if her episodes are several times a day, would this count for testing during an attack? Any more info. you have would be great. Thanks.

[Porpher]

That sounds like a worse version of what I had when I was a teenager. Due to family history I was checked for porphyria, and it came back negative. But I was not tested *during* an attack, and only a 24h urine collection. (My "attacks" then were dx:ed as "vagal shock" and "nervous digestive malfunction" - which they undoubtably were (and still mostly are when they rarely happen).)

15 years later with science advanced quite a bit it turns out I do have the gene, and a bigger panel of tests is inconclusive whether it is active or not (no symptoms at that time). Five years later, and it does seem to be mildly active (red pee, intermittent mystery symptoms, overindulging in carb-rich foods makes me feel loads better - it's just hard to remember to do it when you feel crappy).

[justwanttohelp09]

I'm sorry if I gave you the impression that she had not seen any doctors! She has been to numerous dr's and ER's. Thank you for your replies. Hopefully the testing she is waiting for wiil turn up something.

[Rach878]

This doesn't sound like any ed behavior i've ever heard of either, take her to the doctors right away.

[LeftCoastChick]

I don't believe this is an ED, you really need to get her into a doctor ASAP.

[shlee1016]

This doesn't really sound like a typical eating disorder either. I guess it could be some type of EDNOS but it's not a common eating disordered behavior by any means. Have you talked to her doctor about this?? I definitely with you the best of luck.