Anyone else on an elimination diet (Fed up or RPAH?)

[EloysH]

AS we discussed Shannon off line, the amine content is through the roof if the meat is vacum packed and may be your amine challenge done!

Here are some really useful links:

I think you already found this website but I found some useful stuff:

Babies and intolerance
http://www.plantpoisonsandrottenstuff.info/content/elimination-diet/babies.aspx

Amine rules – how to buy and eat meats
http://www.plantpoisonsandrottenstuff.info/content/elimination-diet/minimising-amines.aspx

Allergy versus intolerance
http://www.plantpoisonsandrottenstuff.info/content/allergy-versus-intolerance.aspx


How to do food challenges
http://www.plantpoisonsandrottenstuff.info/content/elimination-diet.aspx



Well I am a happy chappy eating salicylates galore  today, Day 1 of the salicylate challenge!    Unfortunatley I can't eat the strawberries or kiwi fruit I bought, they are alsp high in amines.  So far no reaction but I do expect him to react towards the end of the week.

[hrk]

I would like someone to oversee an ed, too.  It is hard to find someone...

Salicylates were a HUGE factor in what was going on.  I had noticed reactions with turkey (thanksgiving, deli sliced), yogurt (looking back it was the berry flavoring), tomatoes, advocado, strawberries (led to reflux through his nose), chicken (gassy if not plain/fresh), grapes (after a weekend of eating them, he was off the wall and waking tons; it was the only new food as our berries ripened in our backyard).  Also, being on meds made a lot of foods tollerable, so I wouldn't be surprised for refluxers that you may have to "redo" some of this to figure out what is causing flare ups off of meds.  WE have done several trials of dairy free over time.  He actually got worse on the last two week soy/dairy free, as he was eating higher in sals.  We started a gluten free trial that fell apart right before going back to our gi.  We haven't tried one again.  I  know there is something that could be causing the red bottom we get if we eat away from home and away from his safe foods.  His skin may also be related, and now we have airway issues, too.  So, there are plenty of things to pin down. 

[EloysH]

Jean, so interesting the the high dose of meds can counteract the food intol reactions/pain. I totally think that there are ALOT of bubs out there with food intolerances, unwittingly tagged as having severe reflux.  Reflux may be the major factor, but food intolerance probably often missed.


I do think you will get to the "bottom of the red bottom" one day... just keep plugging away.

So Kai is reacting on the salicylate challenge.   :- His reflux became noticeable right after the first feed with high sals.  He had been relfuxing visibly again and even done a few projectile spews, stiff, uncomfortable generally and taking shorter feeds.    Its been 48 hours, of high sals, he's is a bit worse today. I would hate to think how bad he would get if I did the whole 7 days of high sals. I have been waiting for a poo - but he hasn't done one yet.  I have enough evidence to stop the challenge anyway, - they say to stop as soon as they react.

At least I now "know" and at least I know that if I desperate for some high sals what it means to him - he's not that bad really - not interferring with his sleep but definantly discomfort when hes awake and he's not so happy to be on his own or on his back for long periods.


High sals are overrated anyway,  all the good foods have amines in them anyway, I would LOVE for him to pass the amine challenge!

So now I need to wait for him to improve, then wait for 3clear days to try the amine challenge.

[Gypsymom]

At least I now "know" and at least I know that if I desperate for some high sals what it means to him - he's not that bad really - not interferring with his sleep but definantly discomfort when hes awake and he's not so happy to be on his own or on his back for long periods.

So he can stay on moderate indefinitely? Maybe you'll be able to get away with a few bites of high sals if not everday...

[EloysH]

Yeah I think I will be able to have the odd high thing, his baseline was reached when I ate less moderates - so somewhere between low and moderate.

Lets hope amines are not too much of a problem, I have only been eating low amines. The things i want to eat occassionally like coconut cream  and tasty fruits are high in sals and amines.

[hrk]

Do they want you to reintroduce the sals to make sure it was that and not a fluke or something else?  I am wondering what I should be planning for the future.

Yes, reflux was a major factor, but intollerance was the missing piece.  With that UGI, I knew within a minute of him drinking the barium that he was refluxing pretty significantly, though.  The tech pointed it out on the screen.  :-(  So, it was there for some time after 18 mo (even though the LES is supposed to mature around then). 

[EloysH]

Hey Jean,

That's right I remember when H got the barium swallow.  Do you believe intolerance as the underlying cause or mechanical LES stuff - classic relfux as the underlying cause?

I have a follow up when I am halfway through the challenges.   

I think they would say that once you have your baseline, anything worse than that is a reaction.  I think that they would also say, if unsure if the symptoms you are oberving is a reaction, then continue on with the food challenge right through until Day 7. In theory as the days go on their system is getting loaded up with the chemical and the reaction will become worse and worse.

This is what's been going through my mind the last few days: -   I have evidence to saitisfy me for this challenge, I am not prepared to let him get any worse that this. On his baseline he still has one funny day in every 7, but these last two days were well worse than that, if I look at all the symptoms of is reflux and discomfort, the degrees of each were much more severe than what he shows on his baseline.

So I stopped high sals today and now waiting for the symptoms to clear and for the 3 clear days. 

[Gypsymom]

On his baseline he still has one funny day in every 7

So strange, but it makes me feel better to hear it. S was really fluxxy yesterday and had a big slimier than usual diaper, but otherwise was pretty good. I haven't made any changes to my diet so felt rather discouraged. I was going to try adding white potato last night but decided I'd better not.

Elo, I thought you were going to have more precise threshold info from this process or is that only for feeding K directly (solids)?

[EloysH]

Yes will have precise thresholds of tolerance when we do the "liberalisation"  however, they get you to go through all the challenges first, then the thresholds/liberalisation after.   

   I'm not sure why that's the standard course of action but for me, it makes sense because I want to widen my diet quickly - if I can move through all the challenges first, then I may be able to reintroduce whole groups of foods back into my diet without having to fiddle with thresholds.

The thresholds take a while a think - for instance the dietician suggested (for solids) 1/2 teaspoon every 2 days.  That would take aggggessss.   So I guess if you do a challenge, stop with a reaction, wait, then move to the next challenge you can get everything done in a matter of 6 weeks or so.

Anyway, we will discuss thresholds at the next appt, in a few weeks.

[hrk]

So it looks like you go back to the suspected food groups later.  In the other food challenges, you are eating from the ed but only eating the foods in the targeted group, is that right?

[EloysH]

yes that's very important.  And once the challenge is finished go back to the ED (unless he passes gluten or dairy) you can include those into your diet straight away.  They won't confound any of the results.  I don;t think I'll be testing gluten again and definantly not dairy.

[sherry lynn]

Good luck getting back to baseline quickly

[hrk]

I forgot to answer your question; I really think it was both regarding mechanical vs. intollerance.  Terrible symptoms whenever he was laying down (which seems to indicate reflux to me).  Poos were always regular and fine.  The red bottom has been more of a factor after going off meds.  That seems to point to foods to me, as we have ruled out strep.  Strictly on alimentum he was not fine w/o the meds; it could mean that we should have gone amino acid, but who knows.  Transition to dairy did not produce any additional symptoms at about 15 mo (going by memory on the age).  It was after everyone else made the switch, I remember.

[hrk]

Were they going to do the IgE at the last apt, too?  I am trying to remember, and thought I would ask if you would be getting results (pos or neg).

[EloysH]

IgE was not mentioned.  I don't know why scratch tests seem to be preferred.  Less invasive?  Will ask at the scratch test appt anyway, that's a while off, he's getting them at 8 months now, since he doesn't have rashes or any skin problems, they are not in a hurry to look for allergies. 

So Heath tested neg?  Did he ever get scratch tests?

Kai is already better today, not back to the "normal" but a alot better.  The sals must be out fo my milk by now.