Author Topic: Help - gluten & wheat trialing (Read 5447 times)

*Kara* · « **on:** October 11, 2011, 22:45:22 pm »

So Alexandra had some bad constipation problems back in July - was on Miralax and started to have explosive poops. Took me a few weeks after stopping the Miralax to figure out it might be grain related... stopped all grains and almost overnight, she was back to normal poops.

It's been almost a month with no issues at all, so time to start to figure out if it is gluten or just wheat that caused the issues... or if it was just that her system wasn't ready for grains like wheat at all...or if she wasn't healed from the whole killer constipation issues...

I was giving her a baby rice cereal labelled as gluten free - I was told that gluten free is always wheat free... apparently not in this case. I was looking for an allergen list on the baby food company site and found one - the baby rice that is gluten free may contain traces of wheat.

Where do I go from here? It may contain wheat, but it might not... so I don't know if she has been exposed or not! Do I start with a grain that does contain gluten - and which one? Giving her wheat won't tell me if it is the wheat or all gluten..

And, to make it even more complex - I can't find anything like a flour, cracker etc that is labelled wheat free but will contain gluten... Can you assume that processed with wheat has to be disclosed??

ARGH!

deb · « **Reply #1 on:** October 11, 2011, 23:19:21 pm »

There are grains other than wheat that contain gluten, including barley and rye, so being wheat-free doesn't mean being gluten-free. And many grains are processed in facilities which process wheat, so even if you get oats or rice (which are gluten-free in and of themselves), if they've been cross-contaminated with the wheat, they may contain traces of gluten, in which case the processors have to report that. It's like when something is processed in a facility that processes nuts, they have to say it *may* contain nuts or traces of nuts, even if it might not, so you have to be super-careful to avoid any cross-contamination if you know you or your LO is super-sensitive or highly-allergic to something that *might* be in there.

As to what needs to be reported, in the States they have to disclose certain things like nuts, dairy, soy, and wheat and eggs, but I don't know what needs to be reported in Canada. I imagine it's mostly the same stuff, though.

MasynSpencerElliotte · « **Reply #2 on:** October 11, 2011, 23:30:56 pm »

Canada has the same as the states top 8 plus 3 more, so wheat def should be labelled. I came across a dog treat the other day that had wheat starch as the first ingredient but was gluten free, not really sure how that works.

I think "may contains" are a grey area here and in the states and there are no laws for labelling those afaik. They have to label for things that are in their product, but not otherwise.

*Kara* · « **Reply #3 on:** October 12, 2011, 00:12:36 am »

This one is labelled as gluten free with no mention of potential wheat contamination on the packaging at all... I found the info that it may contain trace amounts on the company website - and it wasn't something easy to find either. Ugh.

As for containing wheat but being gluten free - I believe that I read somewhere that the gluten can be removed from wheat

MasynSpencerElliotte · « **Reply #4 on:** October 12, 2011, 00:50:50 am »

Here, I found what I was trying to say about labelling:

http://www.inspection.gc.ca/english/fssa/invenq/inform/allerge.shtml

In particular this part about precautionary labelling:

"This policy allows the food industry to voluntarily label products which may inadvertently contain substances capable of causing severe adverse reactions. Precautionary labelling, however, must be truthful and must not be used in lieu of adherence to legal requirements. When an allergen is likely to be present in a product, the use of precautionary labelling is not acceptable and the presence of the allergenic ingredient should be accurately declared on the label."

So, it is all up to the company as to "may contains" and you really can't know unless you call the company! But for something to be calling itself gluten free and having wheat x-contam, that seems odd.

*Kara* · « **Reply #5 on:** October 12, 2011, 03:47:52 am »

Quote from: MasynandSpencer on October 11, 2011, 16:50:50 pm

But for something to be calling itself gluten free and having wheat x-contam, that seems odd.

Thanks for the link Heidi! I will read it ASAP.

I totally agree with your thoughts on this too! So odd. Since it isn't on the packaging at all - I would hope that the chances are pretty much nil - but how would you ever know?

EloysH · « **Reply #6 on:** October 19, 2011, 01:55:13 am »

Has she been eating wheat and dairy?

If not, and she is constipated on rice cereal and wheat free grains I would assume it is an issue with digesting grains in itself, as you discovered when taking her off the grains.

I would try a gluten and dairy free diet together, it it were me starting on a gluten free grain I would go for Quinoa or else buckwheat. Buckwheat cooked in rice milk simmering for 20-30 mins is a lovely proridge with bannana mashed into it. Quinoa cooks like rice and and very forgiving and high in protein.

Once she is established on gluten free grains then you can try oats, (technically only teeny tine amounts of gluten) then you can try rye - but it is very hard to find a rye bread that is 95% rye. We have a rye and chia bread in supermarkets in the health food section. She may tolerate selpt down the track - it is an ancient for of wheat but is low in gluten content.

If she doesn't tolerate gluten free grains then you are looking at a grain issue and she probably needs some gut healing and gut flora to be balanced. So a multi-strain probiotic would be a start.

*Kara* · « **Reply #7 on:** October 19, 2011, 03:28:18 am »

Thanks Eloise -

I took her off of all grains about 4 weeks ago and she was totally fine the day after the change in diet. She does eat dairy as well, but not much and not every day. No issues with constipation or the other way since the change - with the exception of the day before a tooth cuts

Otherwise - she is as good as gold!

i started her on a quinoa cereal a week ago (it's an adult o-style cereal), I grind it and use it like rice cereal

She loves it. It is wheat, gluten, dairy, soy and a whole bunch of other things-free! I am just about to start her on other grains again... I think she really just needed to heal her gut as you mentioned. She was on a multi-strain probiotic for 3 weeks.

I was wondering what to start her on first - my SIL suggested spelt since it has gluten but is wheat free - this would tell me if it was a gluten issue or a wheat only issue... if there even is an issue and it wasn't just a gut healing issue

I thoughts oats too but they are very likely to be cross contaminated with wheat... they are next though! This kid misses her Cheerios

EloysH · « **Reply #8 on:** October 19, 2011, 09:05:31 am »

Glad to hear she went so well off the grains. The advice from my naturopath and others that I have heard around the traps is that probiotics take many months to take full effect (for colonies to build up and crowd out the nasties) and should be rotated every 3 months so that different strains get a chance to establish. We have been advised to stay on the probiotics till he is at least 2.

See how she goes on the spelt - But I would hestitate as it is a clos relatve to wheat. I guess it might be nice to know what you are dealing with. I could give at least a slice of spelt bread a day for a week if you are treating it as a food challenge.

My Kai has been off gluten and dairy since day dot but still has gut issues - it's so annoying. He has been on a broad spectrum probiotic for over 10 months and his gut is still lacking in lactobacillus (we got a gut analysis done). He also has overgrowths of some nasty bacteria. We suspect that his is holding him back and still giving him reflux. We also some mineral imbalances, waiting for blood tests back - you need a normal zinc level to be able to produce digestive enzymes and reflux meds hinder absorption of minerals and vitamins in general. Anyway, just a note to say that it can take some time to fogure out, your LO sounds like she is doing really well though

deb · « **Reply #9 on:** October 19, 2011, 10:15:32 am »

Spelt is actually a type of wheat, so using that for a trial may or may not work. I think barley has gluten though.

EloysH · « **Reply #10 on:** October 19, 2011, 10:24:58 am »

I guess it will only tell you if you are tolerating spelt then?

weaver · « **Reply #11 on:** October 19, 2011, 11:33:32 am »

Definitely look carefully at spelt - it is an older type of wheat and is not gluten-free though the number of bakeries that think it is, is shocking. Barley has gluten so does rye. If you are going for gluten-free then you shouldn't be eating oats and should be careful about malt as an ingredient (often in cornflakes, inconveniently enough).

I'm not entirely clear if you're going for gluten-free or not but if you are, then this website is very informative and clear. And it's really good on food labelling.
http://www.coeliac.ie/

And here's a really good informative blog.
http://glutenfreeeasily.com/

HTH.

*Kara* · « **Reply #12 on:** October 19, 2011, 20:11:20 pm »

Thanks ladies - we have been gluten free for 4 weeks now and are just going to start to reintroduce... we need to determine if it is gluten as a whole or just wheat that was the issue... spelt is fine for wheat free diets and does contain gluten.. I know it sounds odd, but it's true

Barley is another one that we could use to test gluten but keep wheat free...

If all goes well with the gluten trials, we will test for wheat issues...

I don't suspect gluten as a whole - she ate barley cereal for two months without an issue... if anything, it could be wheat...

Buntybear · « **Reply #13 on:** October 20, 2011, 17:36:33 pm »

Well I never! So spelt IS wheat - but is OK if you have a wheat allergy or intolerance? I have steered well clear as it normally says wheat on the packaging.

deb · « **Reply #14 on:** October 20, 2011, 17:45:45 pm »

Spelt is often used by people with sensitivity to gluten as its gluten is much lower than regular wheat - but it does still have some, yes.

*Kara* · « **Reply #15 on:** October 20, 2011, 19:56:52 pm »

Here is a good link with a quick reference list

http://www.angieevans.ca/pdf/Grains%20&%20Gluten.pdf

EloysH · « **Reply #16 on:** October 21, 2011, 02:17:20 am »

Claire, I asked my paediatrician about possibly giving Kai spelt one day. He said that if wheat is his issue and not gluten then down the track he *might* tolerate spelt. He explained the gluten in spelt is not as hard the gluten in normal wheat and also it is about 4 times less gluten than traditional wheat. I think that spelt is an ancient form of wheat.

Anyway, he said to try Kai on gluten but not wheat first. So firstly try oats and then rye. For rye I need to find 95 % rye (if it is to be mixed with wheat) That is pretty hard, the only rye bread I know that fits is a rye/chia bread, I think it is about 50% rye and the rest are gluten free grains.

He said if rye went well, we would try spelt down the track.

*Kara* · « **Reply #17 on:** October 21, 2011, 02:27:24 am »

Quote from: EloysH on October 20, 2011, 18:17:20 pm

Anyway, he said to try Kai on gluten but not wheat first. So firstly try oats and then rye

Interesting... we never try oats first - they are almost always cross contaminated with wheat.

EloysH · « **Reply #18 on:** October 21, 2011, 03:03:29 am »

I was thinking that there is a brand here of uncontaminated oats, I must check We have a brand here that makes some kind of claim - I thought it was contmaintaiton free- or else guaranteed wheat free - maybe it is because they are organic - thinking aloud here does that fit with what you know?

The other thought I have is that the Dr said "almost gluten free" when he referred to the oats - now i don't know if that is reffering contamination with wheat or else that oats naturally have a tiny bit of gluten in them but not wheat gluten. I did think he meant the latter.

*Kara* · « **Reply #19 on:** October 21, 2011, 03:19:56 am »

Not sure if it has something to do with being organic... hmmm, that would make sense though.

My SIL has 2 LO's with celiac and they cannot tolerate the gluten-free oats at all.

deb · « **Reply #20 on:** October 21, 2011, 11:06:37 am »

I have a friend whose little girl has full-on celiac, like eat a graham cracker crumb and bloody stool the next day or two full-on. Her regular breakfast is oatmeal, so perhaps her family has found a gluten-free brand. I seem to think that it has more to do with cross-contamination with wheat than oats having their own gluten, and when I look for lists of gluten-free and gluten-containing grains, sometimes oats are "low-gluten" and sometimes "gluten-free," so the available info is contradictory.

weaver · « **Reply #21 on:** October 21, 2011, 12:06:53 pm »

I think also (but this may not be right) that some of the reactions people have to usual wheat is to do with the improvements that have been made to the grain over many years of intensive cultivation. Whereas spelt is an older grain which hasn't been through the same process and so for some people with wheat intolerance, spelt is ok. But it is NOT ok for coeliacs. Of course it's a personal choice whether you let yourself have a 'little bit of gluten' but any gluten in a coeliac's diet is potentially harmful.

weaver · « **Reply #22 on:** October 21, 2011, 12:13:46 pm »

Oh and oats are a mine-field as far as labelling goes. The Coeliac Society of Ireland says a gluten-free diet means avoiding wheat, barley, rye and oats. I know my sister doesn't eat oats though we had a brief period of hope that she'd be able to some years ago. I think the research briefly looked promising or something.

Anyhow, just to prove your point, I actually bought a packet of porridge oats this morning labelled 'everyday gluten free' (in big writing) and on the back (in tiny writing) it says 'most gluten allergy sufferers can eat pure oats without any effect on their health. However, if you suffer from gluten intolerance, introduce this product to your diet carefully and if necessary consult your doctor'. Hardly conclusive!

Buntybear · « **Reply #23 on:** October 21, 2011, 16:13:45 pm »

There is on going reseach whether oats are safe for a cealic. Generally they are considered safe as far as I am aware. The oat protein is similar enough to gluten protein to provoke a reaction in some suffers. I think it is a trial and error protein tbh.

Olly is fine with gluten free oats (the type that is not contaminated with wheat).

MasynSpencerElliotte · « **Reply #24 on:** October 23, 2011, 17:20:52 pm »

I was always under the impression that oats in and of themselves are gluten free, but because they are grown and processed where wheat is then x contamination always happens. I imagine anyone growing gluten free oats has a lot of hoops to jump through in regards to how and where they are grown and processed. I think being organic isn't enough to ensure they are gluten free.

weaver · « **Reply #25 on:** October 23, 2011, 18:12:02 pm »

My point about oats (and that packet in particular) is that some people regard them as gluten free (as it said on the front) and yet if you read/listen to the smallprint they aren't conclusively (as it said on the back). The producers of that packet of 'gluten-free' oats are licenced by the Coeliac Society of the UK so must be producing them in an uncontaminated process but they still have to put a warning on them that they're not suitable for all coeliacs. And the Coeliac Society of Ireland says to exclude all oats from a coeliac diet. Oats, as I said, are a mine-field!

*Kara* · « **Reply #26 on:** October 23, 2011, 20:42:57 pm »

I just read an article about oats/celiac

There is no gluten in oats (unless cross contaminated), but the protein that they do have is similar in structure to gluten, so some celiacs cannot tolerate them at all.

http://www.canada.com/health/diet-fitness/Nutrition+Celiac+questions/5587217/story.html

"Q: I read your notes in the Houston Celiac newsletter. I notice that you did not list oats as an issue like wheat, barley and rye. You mention oats only as a problem if cross contaminated with wheat. Is this correct? I thought oats contained gluten.

A: Officially, pure oats do not contain gluten _ the protein found in wheat, rye and barley that sets off intestinal damage in people with celiac disease. Oats contain a protein called "avenin" which is somewhat similar in structure to gluten, however. So while most people with celiac disease do just fine with oats (as long as they are not processed alongside wheat, rye and barley), some may not."

News:

Author Topic: Help - gluten & wheat trialing (Read 5447 times)