I've just found this website & forum, and from scanning a few posts it seems there is a wealth of knowledge here.
My 10 year old daughter is coeliac and has been diagnosed around a year. Recently shes been getting a resurgence of symptoms, which is obviously causing her some distress. First thoughts were that she has been accidentally glutened at home. During lock down we perhaps had become a bit complacent and not wiped down surfaces etc as well as we could - obviously no school/childminders or eating out so figured it must be home. So we tightened up our control measures and started keeping a food diary again. Making sure we aviod any 'may contain' or anything with oats. Throughout this she was reporting more or less constant pain between 2 & 6 on a scale of 10, and even with the tightened regime. Not nice when a 10 year old is crying in bed saying she wishes her life was over & she'd rather die than put up with the pain anymore (she's not generally a dramatic person)
We're waiting for blood test results, and for an appointment with the dietician but wondering if there might be any advice on what else we can do - really interesting to read the comments over 'gluten free' products still containing some gluten and the effect of accumulation on overall intake - I wasn't really aware that GF ranges would be anything but safe. I'm going to review her food cupboard and perhaps try eliminating grains altogether.
Really hoping that we can get to the bottom of it as its horrible knowing shes in pain all of the time. I have Ulcerative Colitis so am very familiar with how painful stomach cramps are when it flares up.
Sorry for the long post, any advice appreciated!
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lyndap2
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Sorry to hear about your daughter. Have you tried keeping a food diary?
Many coeliac‘s have secondary food intolerances. Mine are dairy and soya (discounting the obvious one of gluten of course!). For a while I also couldn’t tolerate eggs, but thankfully this seems to have resolved itself. In addition to this, too much rice seems to have a negative effect on my wellbeing (which seems to be in everything processed if you are a coeliac!). It may be that going totally grain free is an option for your daughter.
But as you rightly point out, it could just be that your daughter is a coeliac who is unlucky enough to be super sensitive to gluten.
Thanks, we have been keeping a food diary, also including pain scale levels & poos.
Nothing really solid to be gained from them to be honest, in my interpretation anyway. I'm going to try to see if cutting out processed food might help, and encouraging more fruit & veg fibre.
Hopefully the blood test results will be back soon which might shed some more light on things
Hi, sorry to hear your daughter is struggling at the moment. This is entirely relatable, but such a shame she is so young and facing this.
From my personal experience, I'm back at square one after 10 years of gluten free diet, and it seems that gluten free products are causing the issue.
I would suggest (and I too have only become properly educated this year on gluten content of gluten free foods) to avoid ALL foods labelled as gluten free or that have been anywhere near a production line in a factory where gluten is present. Do this for a few months if possible and see what difference it makes.
I've identified that it is ingredients/additives that are deemed gluten free that may be causing this issue, and posted a list on here that others have added to, e.g. yeast extract, dextrose, maltodextrin, glucose, glucose-fructose. All of these do/can come from gluten source. Also be careful with ascorbic acid. Vitamin e in supplements may also be from wheat source.
The standard advice we are given by coeliac societies, etc, is poor. This is a bigger challenge than switching to gluten free bread. The gut also needs to heal and too many damaging additives in gluten free foods that irritate GI tract.
Coeliac also upsets tummy/GI tract balance, so ask for referral for small intestinal bacterial overgrowth (SIBO).
Also conside that corn/maize has a gluten also. It is not thee gluten of coeliac, but may be as impactful. Most GF breads/biscuits use maize/corn flour.
Also find better sources of info than CUK. There is a coeliac research foundation in Florida celiac.org and the Beyond Celiac beyondceliac.org. Many recommend the Australian coeliac society as they do not allow any gluten in gluten free food coeliac.org.au.
I have no experience of children with CD - it sounds horrible for her (and for you trying to sort it out).
It is 18 months since my CD was diagnosed, and I have learned that once on the gluten free diet, and feeling much better, I became more sensitive to small amounts of gluten than I was in the first few weeks, and any cross contamination had more effect, so I had to be even more careful than I first thought.
Then I learned about being temporarily intolerant of lactose, and I have been on Lactofree milk for a year. I am just beginning to be able to drink ordinary milk again now. Hard cheese and live yogurt have not been a problem though. This could be another factor for your daughter.
Finally, I too have given up all manufactured GF products. I am not at all happy with the way they are allowed to have 20ppm of gluten. Somebody on here pointed out how much this can add up to if you were to eat several of these products in a day, and how this could be equivalent to the cross contamination with breadcrumbs that we all have to work so hard to avoid.
I hope all this helps a bit, and that I am not just enjoying the sound of my own voice!
Regarding the 20ppm, it's worth having a chat with some manufacturers. I believe Genius breads/bakery have a policy that they aim for no measurable gluten in their products. The testing only works for 5ppm or above, and Genius claim that they red flag anything that even registers at the 5ppm. Not sure how true this is, but this is what I have been told by them. They do still use 'dodgey' ingredients like dextrose in some of their products.
Interesting - I didn't know that about Genius. When I (rarely) buy pasta etc I look for Orgran, because they are Australian, and so adhere to the stricter Australian standards.
Have never heard of Orgran. That's good to know. Genius do baked goods, rather than dry goods. The quality is interesting at times, but I feel safe with them as long as I avoid anyof their products that contain dextrose, glucose or fructose. The woman who started the business did so as her child needed gluten free and she found the options limited, so she has good appreciation of the challenges.
My daughter prefers the Genius bread so its good to know they adhere to stricter standards. I didn't realise you could get it on prescription though, something to look into.
She also likes the Shar products so will do a bit of research into their standards. To be honest she doesn't really eat much bread as, whatever brand you chose its not really that great tasting!
Schlar are nice, but they do use codex wheat starch in some of their products, which is issue for anyone highly sensitive/reactive to the codex level of 20ppm.
GF food on prescription depends where you live - nothing is available where I am.
I agree that none of the breads taste much like the real thing - I don't bother with them any more, I make some rolls and scone-type things for myself, but mostly eat other things.
As Benjamin123 says, do be aware that many of us have to avoid anything that includes codex wheat.
The 'may contain' is entirely voluntary, in my understanding. It is not a hard and fast rule so many of the processed foods you are using 'may contain' but the manufacturer has chosen not to label so. I found adopting a gluten free diet as acheiving a certain series of levels of understanding. Once you've mastered the basics, you realise there is more to learn about the hazards, and takes time to get it right. I can eat gluten free foods that are labelled clearly as 'gf' but they make me ill, so that is something for you to consider also for your daughter. I can eat foods with no indication of gluten in the ingredients, or used in the factory, I get ill. I'm on a whole food diet now and reaping the benefits. I do not believe we are served well in UK for gf knowledge/foods and we are a long way off what it needs to be for coeliacs to get/stay healthy. Good luck.
I think I need to do some research on options for avoiding processed products and potentially going grain free. I think its difficult with children as they seem to have a lower threshold for what's 'acceptable' in terms of taste. Whereas an adult is more likely to think logically and get used to the taste of something which might be different, or not be as palatable on first taste, with her I tend to get a look like I've just tried to feed her dogsh*t and a 'no'. Then she wont try it again. I think she's getting to an age now though where she can be reasoned with and be more open to trying different things if they're less likely to make her feel poorly.
I managed to speak with the dietician yesterday, but to be honest it wasn't a very productive conversation. She denied that GF products have any gluten in at all and didn't think it was worth cutting out any other food types to see if it helped as 'her diet is already quite restricted'. Just got lots of 'well, it sounds like you're doing the right things' (referring to tighter cross-contamination controls & food diary) and that was that.
"She denied that GF products have any gluten in at all". Wow! This is the gaslighting I have referred to in other posts. This is fully underpinned by Coeliac UK's brainwashing of NHS clinicians and food manufacturers into calling gluten free (food that contains gluten) free of gluten. It is not. Also, from my own personal experience, NHS dieticians have been 'brainwashed' into the mainstream limited agenda on diets. I've had an NHS dietician laugh at me owing to the limitations of my diet and express alarm that I didn't have any dessert options in my diet. They also still tell people with diabetes to have lots of carbohydrates in their diet - a point that Diabetes UK totally dispute. NHS dieticians are, sadly, one of the less successful parts of the NHS, and are, sadly, keeping a lot of ill people ill. Milk intolerance/allergy goes hand in hand with coeliac, and it is norm for many to have to cut it out at least until their villi repair/enzyme levels return to normal. How dare she suggest you keep your daughter ill when there are potential options for her to regain her health. I would, personally, lodge a major complaint on that person. Only by complaints being raised will change happen.
Dietician wise, you need one that is a private dietician (if you can afford) who has experience and qualification in functional medicine/treatment of illness and a full understanding of coeliac.
In terms of your daughters limitations, this is the bit that I have no understanding of and can only endeavour to empathise with the challenges you are having. As an adult I find a proper gf diet incredibly frustrating and challenging. I have no idea how intensified that is as a child with a child's food palate and the social/peer challenges of fitting in and living a normal life. I wish I could give you better answers as an informed parent, but I'm unable to, but can say that this forum is invaluable for information.
So sorry to hear about your daughter. It is possible it's something else and not linked to her CD. I hope you get to the bottom of it. Does she eat dairy?
You will have to wait to see the dietician but it might be worth going dairy free because dairy issues and CD are linked.
In the meantime for her sore tummy try hot water bottles, peppermint tea, and activated charcoal tablets (holland and barrat). They absorb wind.
I'm intolerant to gluten dairy garlic onion sweet potato and a few more and it I accidently eat something I find those measures helpful.
My favourite bread is a home-made one, very easy, is made with almond flour, psyllium husk powder, and egg whites. The recipe is on dietdoctor.com. Websites with recipes aimed at people eating LCHF/keto/paleo diets are very helpful for GF cooking, as they are avoiding grains. They are all, in my view, healthier than most of the recipes pushed as GF, as these are often highly dependent on sugar
I think I've made this before - I went carb free (for weight loss rather than health reasons) at the beginning of the year so made quite a few diet doctor recipes. Sadly this change became completely abandoned during C-19 lockdown so now might be a good excuse to revisit this diet and it's something we can do together as well
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