Oats anyone ?

[Waltonswatcher]

So dd2 has confirmed cmpa and soya allergy . Due to seriousness of it and gut damage incurred she was weaned with no meat fish egg nut seed wheat gluten and obvs dairy and soya .
We then slowly introduced and hit a point where all was tolerated bar dairy and soya . Then the runs arrive so we remove wheat and gluten , no change so remove oats . It took a while but this seemed to work . 10 mths later we reintroduce wheat gluten and oats slowly . All seemed well and then bang the runs are back . Wheat and gluten removed again , now it looks like the oats have got to go too .
I know some coeliacs can't tolerate oats , but how common is that ?
How many cmpa/ soya allergic kids are also coeliac?
And at which point do we just accept it and stop playing guinea pig with her little tummy ?
The consultants apt isn't til Nov . By then she will have regained the lost weight and I will look like one of 'those mums' ... I just can't seem to get that yes , she could be that unlucky .
Anyone else doubt what they can see before their eyes , or is it just me ?

The oats you are giving her are gluten free? Just double checking.

What are the other symptoms when she has oats/wheat/gluten?

Could it be celiac and allergies?

V common. Oats contain gluten. But you can get gluten free ones.

Don't forget, though, they are v fibrous. So could cause the runs even if gluten free.

Can you call/email your paediatrician's secretary? I would do that. I think the GP can run the cealiac test. I remember I got mine done.

It is tough! My DD has confirmed wheat allergy too, as well as milk. Recently we reintroduced soya and all was well, except we got to day 4 and I started getting doubts. I felt like there was some rash there but no hives. DH thought it was all fine. Sometimes I feel like I'm going mad with all the bloody checking and constantly trying to figure things out - it is so frustrating!

The oats are gf . Always have been ( £££)
The symptoms are the usual - watery explosive poo . Bloating and wind . General grumpiness - usually such a happy little thing .
Last time around we had the skin rash too , and terrific weight loss . This time the gp and I haven't let it get that far .
A second stool sample needs to go off just to be 100% its not a bug .
I can ring the consultant , sadly the lovely lady who knows us well is on mat leave . Grr .
I just sometimes get pangs of doubt that I am too cautious , but on the flip side I still remember her fighting for her life .

Waltons, I get similar doubts too, but go with your instinct. You know your dd and the situation best.

I'm wondering now whether my DD may be cealiac too. We are milk, soya, egg, wheat, nuts and fish free but she is still cramps and bloaty at night, and wakes up every 1-2 hours or so. Either that or lactose intolerance ...

Coeliac ds here. Our dietician told us we couldn't introduce gf oats for 12 months after going gf. Unfortunately ds has exactly the same reaction to oats as to gluten

Has your dd been tested for coeliac disease? I think it would be worth having the blood test at your GP surgery but she will need to be on gluten for 6 weeks prior to the test and if it's positive they may or may not send her for a biopsy after that (again, she will need to be on gluten before the biopsy for the results to be accurate).

I'm coeliac, and I have to be very careful with my intake of gf oats - 2 servings a week is my absolute limit

I don't give my coeliac kids oats. If I were you, I would ask your GP for an HLA-typing blood test for DD - the test that tells if you have one of the 'coeliac genes' (DQ2/DQ8). Not having the gene means she won't be coeliac, so you can rule it out. Having the gene doesn't mean that she is coeliac, but combined with the kind of symptoms you're seeing, does make it more likely.

One of my kids tested negative for coeliac, but does have the HLA-DQ2 gene, and had lots of coeliac symptoms which went away when he went gluten-free. I am treating him as coeliac (gf, and no oats) and will do a gluten-challenge and another test when he's older.

Ok, good advice guys !
Blood test would be an option but dd very very dr phobic due to lots of previous investigations . How do they do this with toddlers ?
She's already had one biopsy at 9 wks - no way am I going down that road again . I can not poison her to get the result either . It's hell watching it ...
So perhaps more gf folk can't tolerate oats than I realised . That's an arse as oats are so handy.
My plan now then is to ring consultant and suggest the blood test .
I could actually do with the confirmed diagnosis as my food bill is horrific . The prescription stuff doesn't really offer a lot but, the basics like flour would help at least .
Dd is now skinny as and I'm busy on the protein intake .
I feel like her personal chef !

OP, I know how 'personal chef' feels! It's a lot easier when their gut recovers and they get healthy again, it makes them less fussy around food.

At our hospital, they are very good about how they do the blood test for children. It's done on the children's ward, so the staff are very nice. They give the DC 'magic cream' (local anaesthetic) and they get to play in the playroom while it takes effect. Then they have 2 staff members doing the blood test - DC sits sideways on my lap, with one staff member showing them a book or a toy and chatting to them. The other staff member is behind my back, with one of DC's anaesthetised hands, drawing the blood. It is very quick and painless. Sticker afterwards, too.

All 3 of my DC have had it done, between the ages of 2 and 6, and have all enjoyed the experience! A treat on leaving from the hospital shop (comic or gf sweet/choc like Dairy Milk buttons) motivates them too...

Sounds like a daddy job !!
In my dreams ...

I think you should try avoding all grains, also oats. It's not just the gluten that's a problem, it's other stuff in grains that is just not good for you. We don't eat any grains anymore, although no one in the family has any grain allergy. But my DCs no longer have asthma and DSs wart on his cheek simply shrank and disappeared.

I suggest you look into Paleo (that's how we eat). We have experienced so many health benefits from this WOE. We eat lots of meat and vegetables, it's tasty and easy.

You write that your DD is skinny and that you are looking a protein intake. Also look at fat intake - if her gut was damaged as you write in opening post, good fats (lard, butter, olive oil, coconut oil - no seed oils) could prove very healing for her. Look up bone broth, we cook that all winter.

I have read about paleo diet , but need to again in more depth.
She is only skinny lately due to this recent reaction . I maintain her weight well usually - she's at her best with no wheat gluten soya and dairy . Oats have been ok at times .
I agree with you on the fats - but I am vegan and I prefer to avoid animal products if I can . When she needs to put on weight I do cook meat quite happily for her - she will often seek it out ; as if her body knows what it needs . I did cook with lard when she was on a mega mad exclusion diet - the smell was horrific and even the neighbours mentioned it !
She has done a better poo today , and eaten really well .
Re seeds , she loves them - it was heaven when we introduced those . I will cut them out for a few weeks and observe .
Thankfully I am still bf so that really helps - its been my saviour in too many occasions .

Oh , what about lentils ? She doesn't eat many but I do - could be passing through milk .
Bloody hell , its back to the bad old days of a food diary isn't it ...

Hi, oats (even gluten free ones) contain a protein called avenin which is similar to gluten and can cause gut problems, irritating the lining (hence the looseness). They also contain phytic acid which binds to minerals & vitamins & stops the body absorbing them so probably worth ditching them? Lentils can cause similar difficulties but if they are really well soaked and treated this can lessen the impact. Definitely agree with misscph1973 on the bone broth and coconut oil or possibly coconut milk if she will tolerate it? CoYo do coconut yoghurt which could be a start. Best of luck

Walton, I was vegetarian and then vegan before I went Paleo. I slowly started eating fish, then poultry and then meat.

I am not saying that you need to give up being a vegan, but if you still bf, then she will react to whatever you eat. It's not easy, but you could maintain your vegan diet whilst being grain free. Focus on good fats, ie coconut fats like Sarah suggests and avocados and olive oil. I also think giving up all lentils and pulses might be a good idea. I know it's probably not what you want to hear, but if your DD is sensitive to grains, then she is quite likely also sensitive to lentils and pulses.

You might find it helpful to google Denise Minger, a former vegan. She is very informed on food and health.

I have tried CoYo yoghurt, I found it vile, it is sweetened with xylitol, not that I have a problem with xylitol, but I just don't think coocnut requires sweetening!

Another thing you could try out is fermented foods. I make my own coconut milk kefir, water kefir and kombucha. It's easier than it sounds and their are vey good for gut health. If you are interested, I can send you starters?

we have also stopped all grains and pulses too . Still having rice though, that's seeming ok . I miss lentils already .
We eat all those fats , dd too hates the coconut yoghurt- its just too sweet .
We had a solid poo tonight - she was chuffed , she looks at everyone and takes an interest ( they are not stupid huh).
The consultant is chatting to the dietitian to see if they need to do bloods . The secretary was lovely- it's so nice to get total understanding not a feigned interest and looks of doubt.
I went out for a curry last night with the girls - I had a green salad and fizzy water ... The joy of breast feeding for two and a half years !
We do the good fats well , fat was my concern initially . It's much easier now she can have nuts .
I have no idea what the kefir is, am going to look on net and get back to you- thanks so much .
I am seriously considering the meat again- I feel grim if I'm honest . I started tonight with mackerel . Fish I could probably manage .