comorbid eating disorders

[FMmom]

I'm not sure if this is the best place to ask the question, but I'm curious about how many FMers also have other eating or digestive conditions. I find that so many foods that are supposed to be safe or cautionary for FM are horrible for Kaelin. Following the guidelines always seems to lead to unexpected results.

I definitely know that Kaelin has pancreatic insufficiency, which is fat malabsorption -- but she can take medication for that, thankfully. Her hydrogen breath test was obscenely high, so maybe that accounts for her inability to eat foods that are often listed as safe. But maybe there is another sensitivity.

I looked at the link to salicylatesensitivity.com/ that Charlie posted elsewhere and Kaelin cannot eat any of those foods that are listed under high salicylate. So maybe she has that as well.

I'm just wondering if it is typical that someone with one eating sensitivity to also have another, like celiac or lactose intolerance.

So how do you find "safe" foods for a kid if you can't even figure out all the possible configurations of what they can eat. So very frustrating!

[sherri1]

hello, I also cannot eat eggs and for some reason many red meats like steak or roast. I eat a little cheese but to much makes me sick I drink lactaid milk.

[Charlie Arnold]

Meg isn't great on eggs either. If she has a very eggy meal she seems to be quite sick. I guess maybe the whole digestive system is very sensative, possibly because it seems to be so long before we finally find out what is wrong that it has been damaged by "toxins" for a long time.

The only way to conclusively find safe foods is to do a complete elimination diet, I did one for Megs to figure out what was wrong in the first place and she lived on chicken and rice for 4 days, then I gradually added in foods every other day with clear notes on reactions. Trouble is it is very slow process and very tedious.

[FMmom]

Ooh, I'm so glad that Kaelin doesn't react to eggs -- she lives on them. She eats at least three a day and often has six. And then there are the items that I add egg into...

Sherri, your sensitivity to eggs, red meats, and cheese sounded familiar to me, I knew that I recently read about those items -- and I found it: amines. It seems to be a particular problem for aged foods. Eggs that are getting too close to their expiration date have more amines than fresh eggs; same with meats. Also, high cooking temperatures (such as a frying pan or directly on the flame over a grill) of "muscle meats" will raise the amine level. Fresh cheese, like cottage cheese is okay, but aged cheese like cheddar are high in amines. www.kitchentablemedicine.com/foods-containing-amines/ has a more complete list...

Charlie, you mentioned that Meg eats marmite, which is very high in amines, so I'm guessing that there is some other reason for her egg sensitivity...

When I read about amines, articles also use the word histamines. Kaelin reacts extremely badly to antihistamines but I can't find any sort of connection except in scholarly papers which I just don't understand...

I took Kaelin to the pediatrician this week and she hasn't gained any weight in the last three months, but she's grown almost an inch. The notes her gastro doc sent over said that he wants Kaelin to get another opinion because he is out of ideas. So the pediatrician is setting up an appointment with a Metabolics/Genetics doctor to see if she can find a clue in Kaelin's jumble of food issues and discover the otherwise undiscoverable. But we can't get in until January, so in the meantime, I'm trying to figure out any pattern to Kaelin's sensitivities. So far, the salicylate sensitivity sounds likely. All the fruits and veggies that should be okay for FM cause a world of problems for Kaelin -- and they are all high in salicylate.

[Charlie Arnold]

Thanks for that link FMmom, between FODMAPS, salicylates and amines it looks like most of the new foods are back out again, except green beans. I have wondered about marmite as Meg does seem to live on that, she has several marmite sandwiches a day and although it is only a scraping we do seem to get through alot. Trouble is I can't find anything else she will eat in sandwiches. Cheese is another one, I have made a cheesy meal several times and she hasn't been as good afterwards.

I'm going to google a bit on where in the body all these things are absorbed, maybe there is a link to it all, I have noticed on the australian board alot mention salicylates and amines.

Good luck with the weight, does she get diarrhea as that would mean she maybe isn't absorbing enough from her food.