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

[Peek-a-boo]

I'm so jealous!  What a helpful dietitian and great scientific plan!

[Edesanja]

That sounds fantastic!

[hrk]

I'm glad you have a plan.  I do wonder about a new food every three days, though.  With H that would never fly.  If a symptom started on day 1 of the new food, I would probably guess a reaction to the new food, rather than the three days of the food prior.  How are you going to determine which food it is with certainty?  Did she say?  This has been the crux of our problem.  :-(

[EloysH]

Oh Jean, to qualify- the foods that get introduced every 3 days  are only the 'low' foods on RPAH.  Since he is already tolerating them in my milk, we are pretty confident he will be ok.  SO we will work like this until we get about 10 foods and then sit on those for some time whilst I add more food into my diet.  He will be able to tolerate alot more in my milk than he would directly.  (Yay for me) 

Any food other than 'low' will be considered a food challenge and treated differently.  They will be introduced as 1/2 teaspoon every 2 days, keep going until a reaction happens. The tolerance is then determined 1-2 steps back from that point. 

Although we have already determined that he will react to high sals (through the challenge through my milk) - he may tolerate some moderates.  We have determined that he will probably tolerate moderate amines, although he will react eventually to some.  When these foods are added to his diet they will be treated as above with the challenge protocol for bubs.  Slowly... slowly...

[EloysH]

as for the reaction plan - if there is a reaction, stop the new food, recover, wait for 3 clear days.   THis applies as to whether it is a challenge or adding a "safe" "low" food.

[sherry lynn]

I thought chicken was at a later age?
How will you prepare it?

[hrk]

Eloys, will you also be keeping track of the amts he is eating?  H was so sensitive to textures in the beginning and did not like solids.  So, he would take a bite and then refuse most of his solids until he was on that high dose of meds.  So, he would only eat a bite or a serving a day, and that was probably not enough to tell, would that be right?

[EloysH]

yeah chicken is for later, however bringing in forward as want to get the protein into him. Thats the safest food, intolerance wise. 

Jean: a diary  is a good idea 

[lizzyr]

Sorry to jump on. I  have been reading this with real interest as I have finally established that my 9 month old is sensitive to both amines and salicylates (as well as dairy, beef and soy - possibly other things as well, I do not eat any known allergens and follow the Failsafe diet).

I just wondered if your dietician indicated whether babies grow out of a food chemical sensitivity? I know they often grow out of MSPI, but cannot find out if a food chemical intollerance is the same. I am reading forums of adults who seem to be just living with it.

You are incredibly lucky to have such a great dietician, not many health professionals in the uk seem to know a thing about this.

[EloysH]

Hey Lizzy, welcome 

Luckily my dietician and paed both have spent alot of time at the RPAH allergy unit where the diet was developed.

In short, yes, they often grow out of all the intolerances at the same time, sometimes with ther reflux, sometimes a little later.  It is guaranteed that they become less sensitive with time, of course some have it for life.   The dietician said that it is possible to train the body to tolerate larger amounts by firstly allowing the body to come good - then exposing to small amounts and then larger and larger over time.  This has been done with kids at age 2-5 who are intolerant to milk.   So I wonder if this is the same for adults who are living with it.  I have it flagged to speak to the dietician more about this.

I am really interested to hear about the symptoms of your little one when reacting. What foods did you try?


Failsafe is so hard insn't it

[Gypsymom]

Guess what?! Yesterday as we were driving away from the lake, I saw the postal worker and I asked if she had mail for me. There was just one piece - it was the packet from you, Elo! I was thrilled as I'd nearly given up expecting it. Had to do the long drive home so haven't looked at it yet, but very big thanks!

Super news on your plan; must be a huge relief to not be stressing over what to do

Welcome Lizzy!

[EloysH]

yay Shannon 

Have you added any new foods?

[Gypsymom]

Have you added any new foods?

Nope. Since we have the extra upheaval of moving back to the city, I didn't want to risk a flare, especially since he had a couple of bad days on the weekend (I think his Vitamin D drops). It was a royal PITA to be on a road trip with all my own food. There is literally nothing I can order in a restaurant and consider it safe right now. I was probably pushing my luck drinking their hot water! On the plus side, I was so hungry by dinner, the meal I eat at least once, sometimes twice, a day actually tasted good to me

Great new pic of Kai!

I really need to hit the gym -- the weight I've lost on this "adventure" is not hanging well and my arms have never been so floppy!

*TMI warning*




Strangely, S's poop habits are really changing. When he was really bad, we had 8-12 bms per day. Since I've been steady on my ED, he was going 2-3 times per day, mostly bright yellow and slimy. Now, all of a sudden, he is only going once every 2 or 3 days with lots of smelly gas in between! I don't know what to make of it. When he did go yesterday, it was pretty thin, but not really slimy and about the color of peanutbutter. DH says this means his chemistry is changing and it's going to be a whole new ballgame. Thoughts??

[EloysH]

Ithink his poos sound fine, Kais change quite a bit i think due to age and different things I eat.  Sometimes he has alot of gas, sometimes not, sometimes 1 poo a day or one every 2 days. Sometimes thin and watery sometimes slimy, sometimes seeds sometimes not, sometimes chunky peanut butter bits 

Crap about not eating out eh!   I am eating out for the first time since I start this ED - (months now) on Monday, I rang the restaurant in advance and spoke to the chef. Luckily they were sooo helpful.  They will make me roasted rack of lamb with no pepper and sunflower oil, roasted potatoes and safe steamed veges.

Sorry to hear about the tough road trip. So glad the bookelt go there in time.

I *dare* you to try long grain white rice (not basmati). 

[EloysH]

OK a summary of where I am at with this ED

*Spent 8 weeks on the moderate chemical RPAH diet without egg/soy/dairy/gluten/nuts.
Finally hit baseline when I reduced the serves of moderates to 2 serves a day.

*Did food challenge for salicylates (sals) through breastmilk (protocol invloves eating 6 (or more) x100g serves a day of high and very high sals)

* Kai failed challenge by Day 2

* waited for 3 clear days, go back to baseline diet. Started amine food challenge through breastmilk
(Kai and I reacted to dark chocolate on DAy 1, so started again without chocolate incase it was the caffeine and bromine)  Ate 6 x 100g serves a day of amines (bannanas, papaya and canned tuna and fesh salmon)

* Kai lasted till Day 7. On Day 8 he developed a small rash on his cheeks and showed some mild discomfort.  He actually is considered to have failed this challenge 

* Went back to baselines and waited for 3 clear days.

* Starting Kai on solids of low chemical foods (started today) (we know he tolerates them due to the fact his baseline is somewhere between low and moderate chemical).

Where to from here?

1. Introduce safe "low" foods every 3 days to build up a basic diet for Kai (rice, potato, choko, chicken, pear & swede)

2. Liberalisation of animes and salicylates for me whilst Kai holds his diet constant.  ( So I can eat more). We know I should be able to add quite a few more amines as he went quite well on the challenge.

3. Expand Kais diet to other "lows" Hopefully this means gluten free grains and oils too.  I want to start making him rusks etc

4. We are assuming he will fail dairy and wheat, so next liberalisation of these to add butter and oats for me for 7 days, to see if he can tolerate these small amounts through my milk.

5. Glutamate challenge and antioxident challenge

6. Liberalisation of amines and sals for Kai's diet so he can eat more widely (the veges and fruits are otherwise very limited)

LIBERALISATION PROTOCOL FOR KAI.
The liberalisation protocol for Kai will be to be eat 1 teaspoon every 3 days of a moderate sal or amine for two weeks.    If he can tolerate that he can move to next level of 1 teaspoon every second day for two weeks, then 1 teaspoon daily for two weeks. If there are no reactions on weeks 9&10 he will be on one tablespoon a day of "moderate"amines or sals.

  If there is a minor reaction at any point, then continue on as the symptoms may settle. If an adverse reaction then go back to previous level, and stay at that level.


Not sure what the serving sizes and rate will be for myself for liberalisation, as the chemicals are well filtered in the milk.  I think I get to add one extra serve of moderates every day for two weeks and then up from there.

as time marches on and he takes less BM, I will be able to eat more serves of each problem food simply because he is taking less volume than previously.

I also have high hopes that as he approaches 1 year old his tolerance will go right up and he can start eating really widely.