Told to avoid Gluten free oats - 3 year old recently diagnosed

[Rebecca129]

Hi

Ive posted once before. My son is 3 and recently diagnoses with celiac. We had our gastro appt last week and the dietician advised for the first 12 months after diagnosis to avoid oats also- even gluten free version. They said its because the protein composition is similar to gluten? They said we can reintroduce them after 12 months. I wanted to query this advice because my son has gluten free porridge every morning and really enjoys it and i like him having a healthy start to the day, as opposed to sugary rice type cereals. Can anyone advise further on this advice. Is this advice similar in other areas? Ive ready online that oats are ok as long as gluten free but my dietician has said otherwise. 

Just now, Rebecca129 said:

Hi

Ive posted once before. My son is 3 and recently diagnoses with celiac. We had our gastro appt last week and the dietician advised for the first 12 months after diagnosis to avoid oats also- even gluten free version. They said its because the protein composition is similar to gluten? They said we can reintroduce them after 12 months. I wanted to query this advice because my son has gluten free porridge every morning and really enjoys it and i like him having a healthy start to the day, as opposed to sugary rice type cereals. Can anyone advise further on this advice. Is this advice similar in other areas? Ive ready online that oats are ok as long as gluten free but my dietician has said otherwise. 

Thanks in advance

[cristiana]

Hi Rebecca

I was told to avoid oats for six months when I was diagnosed here in the UK.  But then again the advice may be different for children.

About ten per cent of coeliacs react to avenin, the protein in oats, and therefore cannot even eat the pure variety.   Unfortunately I appear to be one of the unfortunate coeliacs in this position.  

I imagine the thinking here must be that if one excludes oats initially and a good recovery occurs, once they are reintroduced and then symptoms return, it would indicate the patient was sensitive to avenin as well as gluten?

Cristiana

 

Edited August 7, 2021 by cristiana

[Rebecca129]

Thanks for your response

[RMJ]

I avoided oats for several years and got my antibodies down into a normal range before finally asking my gastroenterologist if I could eat them.  She said we could do a test.  I ate them for six months then she rechecked my antibodies.  They didn’t go up, so I can eat oats.

[cristiana]

Hi RMJ

I haven't been able to eat them for years but started again in the spring.  Initially all OK - but overdid things, and then got gastritis type symptoms and twitching muscles.  I have no idea if it is the oats or whether something else is responsible so I'll be interested to see if my antibodies have gone up.  I am so glad most coeliacs can eat oats though, I missed them!

C.

[Kate333]

Ignorant American Q:  what's the difference between porridge and oats?  Is one safe and the other not?

 

 

[Rebecca129]

Porridge is oats, they are the same thing, sorry x

[cristiana]

10 hours ago, Kate333 said:

Ignorant American Q:  what's the difference between porridge and oats?  Is one safe and the other not?

 

 

 I think of porridge as oats cooked with water and salt (if one is Scottish) or milk and sugar (if one isn't!) At least, that is what we call it in this house.   The thing that I do wonder about is what you Americans call flapjacks.  Flapjacks in the UK are oats added to melted butter, brown sugar andgolden syrup etc to make a sort of oatey biscuit.  Absolutely delicious.

All the above can be made using pure oats or normal oats... 

[notme]

i couldn't eat oats of any brand for 10 years, but now i can eat certain brands (nature's path is the one i eat the most) so i guess i had to heal up lolz

cristiana, i want to try your 'flapjacks' now!

[Rebecca129]

Thanks its just my son has no immediate symptoms. I guess im just hoping he isnt one of the 8% of celiacs allergic to avenin also. It really restricts their diet and being only 3 he is already fussy enough!! 

[cristiana]

https://www.nigella.com/recipes/guests/regula-ysewijns-flapjacks

35 minutes ago, notme! said:

i couldn't eat oats of any brand for 10 years, but now i can eat certain brands (nature's path is the one i eat the most) so i guess i had to heal up lolz

cristiana, i want to try your 'flapjacks' now!

 

This looks like a good recipe.   I'd advise to stick to oats - don't use spelt - and also forget about the chocolate chips.  Your first flapjack should be unadulterated.   If you slightly undercook them or add a bit more syrup (I think in the States it's called light treacle?) they will be softer.

https://www.nigella.com/recipes/guests/regula-ysewijns-flapjacks

Edited August 10, 2021 by cristiana

[mjroda]

Yes, avenine is one of oats composition. my son has to take it off too.

[sddave]

On 8/7/2021 at 2:33 PM, Rebecca129 said:

Hi

Ive posted once before. My son is 3 and recently diagnoses with celiac. We had our gastro appt last week and the dietician advised for the first 12 months after diagnosis to avoid oats also- even gluten free version. They said its because the protein composition is similar to gluten? They said we can reintroduce them after 12 months. I wanted to query this advice because my son has gluten free porridge every morning and really enjoys it and i like him having a healthy start to the day, as opposed to sugary rice type cereals. Can anyone advise further on this advice. Is this advice similar in other areas? Ive ready online that oats are ok as long as gluten free but my dietician has said otherwise. 

Thanks in advance

I don't eat anything with oats or soy/soybeans.    Farmers sometimes plant wheat, then harvest it, and plant oats or soybeans in the same spot.   This 'could' contaminate oats or soybean.    In addition, I think food producers handle wheat, oats and soybeans in the same facility and could cause cross contamination.  I'll probably never eat oats or soybean again.  I'm so sensitive to gluten I won't take the risk.

[RMJ]

17 hours ago, sddave said:

I don't eat anything with oats or soy/soybeans.    Farmers sometimes plant wheat, then harvest it, and plant oats or soybeans in the same spot.   This 'could' contaminate oats or soybean.    In addition, I think food producers handle wheat, oats and soybeans in the same facility and could cause cross contamination.  I'll probably never eat oats or soybean again.  I'm so sensitive to gluten I won't take the risk.

Very true, for most oats.  Some growers specifically avoid fields, silos, trucks, etc that have processed wheat and produce “pure oats” that are gluten free.  I’m very sensitive but can eat those. Some with celiac still react to those because of the avenin.

[sddave]

2 minutes ago, RMJ said:

Very true, for most oats.  Some growers specifically avoid fields, silos, trucks, etc that have processed wheat and produce “pure oats” that are gluten free.  I’m very sensitive but can eat those. Some with celiac still react to those because of the avenin.

I've never heard of avenin.   Does it damage the villi?

[Rebecca129]

In this case, my gastro advised us to avoid even oats labelled ‘gluten free’. The reason being is that the composition is apparently similar to gluten and thats why its advised to avoid it for 12 months initially. Only 8% of celiacs apparently have this sensitivity so i have to weigh up wether to cut it out as it is an already extremely restrictive diet for a toddler. My uk celiac website does not mention avoiding oats and says they are ok as long as they are labelled gluten free. Obviously the dietician /gastro is the specialist so i dont want to discount his advice but it is just very difficult to manage as my son loves oats. Thanks for everyones replies.

[RMJ]

It is a protein in oats that is somewhat related to the gluten in wheat, rye and barley.  It can cause issues similar to gluten in about 10% of people with celiac disease.

[Diana G]

On 8/7/2021 at 2:33 PM, Rebecca129 said:

Hi

Ive posted once before. My son is 3 and recently diagnoses with celiac. We had our gastro appt last week and the dietician advised for the first 12 months after diagnosis to avoid oats also- even gluten free version. They said its because the protein composition is similar to gluten? They said we can reintroduce them after 12 months. I wanted to query this advice because my son has gluten free porridge every morning and really enjoys it and i like him having a healthy start to the day, as opposed to sugary rice type cereals. Can anyone advise further on this advice. Is this advice similar in other areas? Ive ready online that oats are ok as long as gluten free but my dietician has said otherwise. 

Thanks in advance

My opinion only…I’d avoid the gluten-free oats… yes the proteins are similar in oats and wheat/rye/barley, etc. products. I’ve had issues all my life with IBS, fibromyalgia and POTS… oats (even gluten-free)  messed up my digestion for years. 

[cristiana]

4 hours ago, sddave said:

I've never heard of avenin.   Does it damage the villi?

Dave, this is something I would like to know as I've never been able to find this out.   All I can say is about three months ago I found I could eat oats (pure, certified gluten free) again seemingly without pain and probably rather overdid it.  Then, a month later, the burning stomach and neuro symptoms (muscle twitching) started up.   There could of course be a completely different cause but until I get my blood tests back at my bi-annual visit to the gastroenterologists I won't know.

 

[RMJ]

If you really want to dig into this topic, here is a scientific paper summarizing research available in 2019.  Overall they recommend not adding oats back until symptoms have resolved. They note that the strain of oats (something a consumer would never know) may make a big difference. Unfortunately it isn’t clear in all the studies they summarize if the oats are “pure” or not.

Ongoing debate on oats for patients with celiac disease

I found the following paper particularly interesting - they  fed celiac patients oats and then looked for an avenin-specific T-cell response, i.e. looking at the level of an immune reaction. There was a definite response, but only in 8% of the patients. 

T-cell avenin response

Here is a great diagram that shows how the different proteins in grains are related.  One can see that prolamin proteins in wheat/rye/barley are closely related, the avenin in oats a bit more distant (different tribe) then prolamins in rice, corn, sorghum and millet a lot more distant (different sub-family).

Prolamins in grains

If this is too much information please forgive me, I’m a scientist and I love this stuff!

[cristiana]

😊 RMJ - I wish I had your brain!  Can you tell me, this T cell response etc, are they saying there was actual villous blunting as a result of consuming oats?  It's late here in the UK and I'm reading this and finding all of this a bit complicated.

Edited August 11, 2021 by cristiana

[RMJ]

The T cell response was observed “in vitro” (in a lab, not in someone’s body) so it isn’t directly related to villous atrophy.  What it does say is that in some patients their immune system did react to the protein avenin from oats.

Most studies that did biopsies didn’t show villous atrophy, although some subjects had annoying symptoms. Here is one study (reference #31 in the paper I linked earlier) that did show oats causing villous atrophy, but in a minority of the subjects.

Oats and villous atrophy

So overall it looks like a small minority of those with celiac disease can definitely have an immune reaction to avenin, the prolamin protein in oats, and sometimes have villous atrophy.  I wish there was an easy blood test to tell who these patients are! Unfortunately at the moment the way to tell is: heal on a gluten free diet then try oats and see how you feel, how your antibody levels are, and how your intestines look on biopsy.

[cristiana]

RMJ - thank you so much.  I find the whole oat question so interesting.  Strange thing is I had absolutely no pain eating oats until I adopted a gluten free diet, and ate them all day long those days .    

[Rebecca129]

Thanks for everyones replies, very interesting. I also think if you cut something out strictly as is being suggested, and then reintroduce- the body is not used to it so i wonder if symptoms are therefore more obvious? Like if any food was eliminated them reintroduced- such as dairy etc

[cristiana]

39 minutes ago, Rebecca129 said:

Thanks for everyones replies, very interesting. I also think if you cut something out strictly as is being suggested, and then reintroduce- the body is not used to it so i wonder if symptoms are therefore more obvious? Like if any food was eliminated them reintroduced- such as dairy etc

I reckon you are right there.   

One thing I ought to add is sometimes I think pain can be to do with the inablility to tolerate a certain sort of fibre content in the short term, while the gut is healing.

I had the very same sore stomach when I ate lentils after diagnosis, so I had to give them up.   I reintroduced them a few months after going gluten free and they no longer caused the pain.   So I think it was the type of fibre that was irritating my then inflamed gut.  Something worth considering perhaps.    If you reintroduce oats after six months, and there is pain, try a few months later.