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daisychaon

Non-IgE food allergy- multiple proteins

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daisychaon

Hi All, I suppose I just need to feel like we are not the only ones going through this... there is so much info around for anaphylxis (IgE mediated allergy) but I haven’t found much for non-IgE and would love to hear from anyone with similar issues.

My DD is 19 months old and has multiple non-IgE allergies : CMP, soy, wheat, egg and corn, and certain fish, as well as lots of intolerances which my dietician feels are secondary to the gut inflammation from the allergies. These include most legumes, watermelon, sesame, likely coconut, beetroot, eggplant, etc. we seem to be best when on a low FODMAP diet (in particular avoiding onion, garlic and oligosaccharide rich foods. She has never slept through the night and seems to be in an almost perpetual state of grumbling along with gut pain, flatulence and loose poos, and 2-3 hourly waking. When having an allergic reaction she goes to half to one hourly awakening in agony and mucus poos. It’s horrible. The “grumbling” state seems to be almost eliminated with strict FODMAP though and she will then sleep 4-5 hrs with one night waking. However, any time I try to liberalize away from this or introduce something new we run into trouble.

I find it takes so long to try to work out triggers as it is dose dependent and often only after it builds up over several days, and then with the time delay to reaction with non-IgE (up to 72 hrs). I would never wish anaphylaxis on anyone and don’t know how those mums cope at all, but at least they get a definitive diagnosis and very clear signs if something g is causing a reaction! I hate trying to work things out all the time and self-diagnose and feel like I am never on top of it and it’s such a guessing game.

We have always had good growth but last three months she has dropped off her centile line and now trying to boost calories. I just wish I could fatten her up with dairy and eggs? Can’t even use coconut milk. Food options are quite limited and eating out is hard. Even allergy friendly food in supermarkets often has maize (corn).

Anyway sorry to rant on and on but just wonder if anyone else out there in same boat and any tips you might have? Can’t write a proper post as my poor DS clamouri g for my attention while DD has a nap!

Thanks in advance lovely people!

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Jameelah

Hi daisychaon,

 

I'm sorry I can't give you any advice but I wanted to let you know you are not alone in your frustration. Our journey has been a long one and there has been a lot of notes in our food diary and frustrations as we essentially try and figure out my son's triggers. We've had blood tests, no skin prick tests so far, but results so far haven't fit what we see. Some of his reactions are immediate (such as hives) while others are more delayed (like belly aches and mucous in his stools or eczema).

 

He's almost 17 months now and for the most part we have been able to prevent reactions after modifying his and my diet.

 

Here's hoping that in time it will get much better.

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daisychaon

Thank you Jameelah, sorry to hear you are going through a similar thing. It’s just so awful to see them suffering isn’t it? And the frustrations of the limitations of the diagnostic process. Obviously you are still breastfeeding, as am I. All the best, the experts tell me we might grow out of it by 3, 4 or 5 so let’s bunker down for now and hope for the best xx

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tinselfoil hat

I couldn’t not comment OP, you have my sympathy. That sounds so hard and demoralising :( thankfully DD has only one simple intolerance but I have some idea the difficulty because I went through somethings similar for myself a number of years ago. Without toddler fussiness and weight gain thrown in of course. You are doing an amazing job managing all that on little sleep. What a gift you are giving your child still breastfeeding!

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Ellie bean

I just wanted to ask if your dd may also have silent reflux and if you’ve looked into medication such as losec for the pain and sleep issues? My dd had protein intolerances as a baby but largely grew out of it as her gut matured so I’m no help there sorry but I do know what a huge difference the reflux meds made to her comfort. Often cmpi and reflux go hand in hand, I’d be wanting to check she’s not suffering oesophageal damage. May be worth raising with your dr? RISA website (www.reflux.org.au) May be a useful resource for you if only to read stories from parents in similar situations. I really feel for you, it’s so hard to see them in pain especially when you’re exhausted.

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daisychaon

Thank you so much for all your responses and words of support and encouragement which brought a tear to my eye. It is so bolstering just to have someone say I am doing a good job. Much gratitude lovely ladies. Supermombie, don’t know how you love with this as an adult knowing it’s ongoing and not something to grow out of. I absolutely take my hat off to you. People have no idea how difficult it is and I suspect half the time they probably think you are making it up or exaggerating. Or a hypochondriac. Yes, it seems to take DD a few weeks at least to recover if it’s been a bad reaction. I absolutely need to slow down with the introductions, allergist was really pushing me but she also wrote me off IMO, stated most of the behavior was “within normal limits” and would make comments like “all babies fart”. Alfoil hat, your sympathy was really nice to receive, thank you. Yes Ellie bean, we battled horrible overt reflux for a long time, started losec finally around 8 weeks of age, couldn’t wean it till 18 months (would start hiccuping every time we tried) but she is now off it without recurrence of those symptoms, but absolutely thank you for mentioning it, might benefit someone else going through this. In fact it was the reflux that first made me suspicious re CMP allergy but my paed was very dismissive and basically said it may or may not be CMP, could be anything, and so no point trying elimination. Because she was thriving it really got ignored by the health professionals until I begged him in desperation to let us try neocate, (this was when the symptoms really ramped up 200% after starting solids) at which point he said i needed to try lactose free formula !?!?!?!? Really frustrating. Feel like inviting them all for a sleepover at our place and then they might change their tune when they see my precious little girl on AGONY. Anyway thanks again all xx

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Ellie bean

If you are still looking for a formula to supplement with, allerpro is available without a script, we found it to be good- not as hydrolysed as neocate etc but partially hydrolysed like pepti junior

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daisychaon

Oh and thank you so much for insights and suggestions Supermombie- rice protein powder sounds really useful. We do see a paed dietician and she recommended extra scoop of neocate powder (she only drinks about 50 ml though anyway) and lots of nuttelex and olive oil, bacon fat etc. I feel terrible giving her all that saturated fat though with no nutritional benefit other than putting g weight on?

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daisychaon

Oops sorry didn’t see other posts- yes we are on probiotics. Extensively hydrolysed not enough for us, unfortunately

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Learningtosayno7

daisychaon what state are you in as I can give you a contact for someone if you live in Melbourne.

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Threelittleducks

Our DD had FPIES allergies to egg when a baby and was then able to grow out of it at around 2-3 years (for which we are very grateful). My husband follows the FODMAP diet and we notice our DD is similar in many ways and while we don't have to be super vigilant, we do loosely follow a FODMAPs diet for her (she reacts with loose stools and eczema, but far less severe than what you are describing).

 

I really do empathise with Mums like you who have the extreme end of this, Very hard work. There is an Australian FB page for FPIES support, which may be of interest to you (although I understand that your not quite the same as this, the parents there may be able to point you in the right direction for other similar groups).

 

Best wishes

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Tesseract

Another chiming in to say you're not alone. DS has CMP and soy intolerance, plus intolerance to sorbitol and fructans via onion and garlic. Can handle small amounts of legumes and mannitol thank goodness.

 

Just wanted to check since you said you're still breastfeeding - you're on the same diet as him right? The research into how FODMAPs go through breastmilk is in its infancy (no pun intended!) but if I eat sorbitol I absolutely see it in DS - screaming all night, green mucus poos etc.

 

His FODMAP intolerance is inherited, so we're well versed in the diet and I know how frustrating it is, especially eating out! But as they grow their tolerance grows too. And as you know most babies grow out of CMP intolerance. Hanging on there with you!

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MooGuru

Thank you so much for all your responses and words of support and encouragement which brought a tear to my eye. It is so bolstering just to have someone say I am doing a good job. Much gratitude lovely ladies. Supermombie, don’t know how you love with this as an adult knowing it’s ongoing and not something to grow out of. I absolutely take my hat off to you. People have no idea how difficult it is and I suspect half the time they probably think you are making it up or exaggerating. Or a hypochondriac. Yes, it seems to take DD a few weeks at least to recover if it’s been a bad reaction. I absolutely need to slow down with the introductions, allergist was really pushing me but she also wrote me off IMO, stated most of the behavior was “within normal limits” and would make comments like “all babies fart”.

 

but my paed was very dismissive and basically said it may or may not be CMP, could be anything, and so no point trying elimination. Because she was thriving it really got ignored by the health professionals until I begged him in desperation to let us try neocate, (this was when the symptoms really ramped up 200% after starting solids) at which point he said i needed to try lactose free formula !?!?!?!? Really frustrating. Feel like inviting them all for a sleepover at our place and then they might change their tune when they see my precious little girl on AGONY. Anyway thanks again all xx

 

Just wanted to add in here that it's ok to change medical teams if you don't feel supported by them or they aren't working with you or to say "I don't understand how you've come to that decision."

That is a lesson I wish I'd learnt earlier. DS only had CPMI and reflux which potentially may have been a symptom for something else but, with the exception of my GP and immunologist, almost universally ECNs, paEd etc "all babies cry", "you can't expect a baby to sleep through the night", "typical first time mum" - they judged without listening to what I actually said.

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daisychaon

Thanks to each and every one of you for those thoughtful comments/insights, and for caring. Some very useful ideas. Unfortunately banana is one of our triggers.

Yes, I make my own flour mix and make bread (can’t find a commercial one that fits our requirements) and muffins etc.

orgran egg replacer is a lifesaver!

Lots of stuff has corn (maize) but I must admit I haven’t properly canvassed Aldi or coles so will make time to do that.

Anyone using hemp milk? I like the idea of the high protein. Have made it myself a couple times but would love the convenience of it pre made- does anyone buy it in store or online and if so where do you get it?!?!

Thanks again everyone. FPIES group sounds like a great place to start.

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daisychaon

Meant to say I use rice, tapioca and buckwheat flours in flour mix

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daisychaon

Threelittleducks and tesseract, I was really interested to hear that your little ones seem to take after their dads re FODMAP issues.

My DD seems to be very similar to my husband in that he is intolerant to gluten (though not Coeliac) and there are a few other foods that give him issues. All came on in adult life for him though. His mum and maternal uncle are similar. I have asked the allergist if this is possibly something that DD will not grow out of but rather some familial IBS variant, but she is convinced she will grow out of it. I’m not so sure.

We are not in Vic so Melbourne contact unfortunately no good for us!

Supermombie, thanks for checking aldi flour and for ideas. You have given me renewed inspiration and I am going over all my recipes again and reworking them. It’s just so hard when so exhausted and never get a moment to myself day or night!

Thanks again everyone

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daisychaon

Oh yes and Tesseract- did you get breath tests done or just work out by trial and error re intolerances to diff carbohydrates? Yes, I am following the same diet as DD.

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Jameelah

It really is hard when you are tired or unwell. Cooking everything from scratch is so time consuming too. Cooking large batches of things and freezing is the only way I can manage.

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gc_melody

Another one here who is walking the path of both allergies and intolerances. My two are now 5 and 7 and still experiencing and medicated for reflux and on medically supervised restricted diets.

 

I cook with Neocate to keep their weight up and nutrients on track. We follow the RPAH Friendly Food diet on recommendation of their allergist/immunologist and gastro and between sticking to this diet and medicating for reflux, my kids have thrived. They still have 3-4 monthly check ups with the allergist/gastro and our food challenges haven't gone so well yet. I still hold out hope !

 

It is a seriously steep learning curve to understand and manage it. You might not think so but you are managing. It sucks, it's exhausting making everything like a 1900's nanna did but this far down the track, I can reassure you it does get easier. Either because this lifestyle is a 'new normal' or the sensitivities aren't as intense, or the kids can communicate and understand better or maybe all of the above. But it does get easier. You are in the trenches now and I feel for you.

 

RISA and investigating silent reflux co-morbidity is a good suggestion. Without RISA and EB, I'm not sure I would have made it this far TBH. Hang in there and sending random cyber hugs to a Mum who is doing a great job.

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daisychaon

Thank you so much gc_melody! Wow, you are a superstar in my eyes. That is full on, going through it with both kids and for so long. Thank you for reminding me of RPAH, was meaning to look into it a while ago and forgot (Brain cells totally taking a hit from lack of sleep!). Will check it out. Again thanks for your supportive words, what lovely people there are on this forum, I feel so bolstered by you all X

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gc_melody

No superstar here. No choice more like it :smile:

Hang in there, you're doing a fantastic job. Things will get easier.

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daisychaon

Thanks supermombie, good grief, just looked briefly at RPAH and nearly had a nervous breakdown, all that stuff about amines in various foods in various states/ages etc, it totally freaked me out to think that I could have been on totally the wrong track this whole time... however I have taken great comfort from what you said, especially the fact that low FODMAP works much better for you. I remember my dietician at the outset being very dismissive of RPAH given the paucity of scientific literature to support it. She definitely did not recommend it. However, I know many people absolutely swear by it. The gut is an incredibly complex organ and western medicine clearly doesn’t have a good handle on it at all.

Speaking of which, has anyone had any success with complementary/alternative options ie naturopathy???

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Learningtosayno7

Hi Daisychaon further to my PM last week yes I have another SIL who has had great success with alternative therapies and she now is able to eat a much more varied diet to what she used to be able to. Happy to chat further via PM if you want more details.

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gc_melody

Intolerances and allergies vary widely and what approach works for one, will not work for everyone. I think you need to find the approach which provides the best quality of life and reduction of symptoms, whatever approach that is.

 

FYI. The elimination aspect of the RPAH is not meant to be used long term. Most people use this phase until they are symptom free for two weeks to get to a base line and then systematically commence food challenges to reintroduce foods. It's a process and can take time to identify what causes reactions. The process is then repeated until you can find a dietary intake which is tolerated.

 

As I understand it, tolerance of naturally occurring food chemicals and proteins changes as the gut matures. Allergens which cause anaphylaxis are obviously not included here. My children are prescribed supplemental Neocate to cover macro and micro nutrients they aren't getting from their diet at the moment. I am hopeful this will change as they get older and their gut matures. Although I suspect my children will remain sensitive to respiratory and reflux inducing environmental allergens given the family history.

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gc_melody

The gut is an incredibly complex organ and western medicine clearly doesn’t have a good handle on it at all.

 

Agreed. But I think extends across the divide between traditional and complimentary medicine.

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