Hi. I'm wondering what is the longest anyone has gone on GF diet before being glutened? All the standard medical advice is that you must adhere to a rigorous GF diet for full recovery and stay that way forever. I'm not sure the people advising quite get the issue with how impossible that can seem, other than stay at home permanently in a hermetically sealed environment and only eat food that has been subject to a gluten test prior to your eating it. Has anyone managed to crack this properly? I've been GF for almost 10 years and starting to suspect that I'm never going to even manage a full month without glutening. I'm pretty stringent, live alone, seldom eat out, shop with GF avengence, yet still getting glutened. Tonight it was with some mixed roasted nuts from Tesco in their own little sealed container.
Successfully GF, or just flailing and... - Gluten Free Guerr...
Successfully GF, or just flailing and failing?
Hi,
Yes - it is definitely possible. I had my routine check-up of blood tests recently. When I went back for the results my TTg2 Coeliac blood test result was so low and so within the healthy normal range, that my GP looked at it and mistakenly thought I didn’t have Coeliac Disease. She was a little taken aback when I said that actually I did…!
Don’t get me wrong, sometimes I still have gut issues from time to time. However these days it is normally caused by secondary food intolerances. In the case of nuts, the main culprit recently was macadamia’s. The reaction I got felt quite similar/a milder version of being glutened - needless to say it was pretty horrible.
And yes… I do eat out on occasion. I’m just super careful in when deciding which restaurant(s) to frequent and have very supportive friends.
Take care.
Hi Regalbirdy (nice name!). Thanks for posting. That's positive that you are doing well on the avoidance front. It's interesting you mention nuts as a second allergy. When I am being 'caught out' it seems to frequently involve things containing nuts, but I've dismissed that as cross-contamination. I'm fine with peanut butter, pistachios and brazil nuts as I've eaten all recently as individual items, with no issue. But I have been glutened this weekend from a roast mixed nut pack from Tesco. Tesco are checking with the manufacturer but have it one their 'safe' list. Think maybe take your lead and just avoid nuts also.
Hi,
It sounds like it might be just one specific type of nut in that packet causing your problem? Maybe you could figure out which one it is? 🤔
It seems a shame to throw the baby out with the bath water (so to speak)! 😉 All the nuts you mention that are fine for you to eat, are packed with protein and many other nutrients. So enjoy!
You could be right. I need to eliminate the suspect. I had suspected maybe it was the almonds as have had issue with them before. I'm aware almonds should be soaked before use as they have a toxin in the skin which makes them challenging to digest. Ok, I have a little experiment to run then by lining up the nuts, and seeing if there is a specific culprit. You're right about nuts being good in your diet. I love them, and they're pretty versatile and handy.
Btw, I don’t avoid all nuts – I eat several different types of nuts every week. Just not macadamia’s!
They are too pricey as well those macadamias.
Hi
It’s possible to have real problems with the very low levels of codex wheat starch found in some foods, although they are labelled gluten-free.
Any problems I have now, like RB, appear to be from secondary intolerances, such as dairy, or from food additives. The additives used in a lot of ready made gf foods, like gums or cellulose, give me bad stomach pains etc. I cook from scratch and avoid anything prepackaged / processed unless it’s from a trusted supplier.
Have you tried eliminating other common allergens, like dairy or soya? You could perhaps also look the Fodmaps diet, it helped me recently when I was having digestive issues.
Hi Penel. Thanks for posting. I've eliminate dairy years ago as got quite allergic to it. Month ago removed all soy products as told that might have coeliac-like reaction. I'm aware now from going through posts on this forum that gluten may be hidden in the more obscure ingredients like what you have mentioned. Additionally things like glucose syrup, vitamin e and starches. It is a minefield, and proper labeling with be an absolute life saver.
Hi Mise
Just to make it clear, the problems caused by the additives (especially emulsifiers) aren’t anything to do with gluten, but they have been shown to cause damage to the gut.
The ‘permitted’ levels of gluten allowed in products labelled gluten free is a real problem!
Thanks for updating on the additives. Our food in the UK is just full of crap really.
Yes, I think I'm learning that the 20ppm is a bit of a farce. I've posted on here regarding having coeliac reaction to a gluten free beer with the cross grains symbol on it. Coeliac UK stated it met gluten free regulations but lots of online posts/threads stating it's making people ill. I think the 20ppm is for the benefit of the manufacturers not those avoiding gluten.
It has to do with gluten, for the same reason that the 20ppm standard is set.
EFSA did find traces of gluten in the derivatives from wheat (dextrose, glucose syrup etc), up to 1,4 mg/kg.
But they concluded that the amount is safe for most coeliacs, unlikely to cause adverse reactions for the majority of individuals. Usually all these studies show that someone is not coping with the amount we should. Like 6% of the kids in the paper EFSA is referring to did react to amounts less than 10ppm. 2 children out of 32.
It's always tremendously small amounts of testsubjects. The greatest is 90 individuals, divided into 3 groups.
You are excluded from the experiment if your vili is too damaged, and/or if you still have symptoms. Hence no hypersensitive subjects are in those studies.
Link:
Science behind the decision
efsa.europa.eu/en/efsajourn...
EFSAs decision
starch.eu/blog/2007/11/01/p...
Interesting links, thank you.
Emulsifier additives are detergent-type molecules and can cause damage to the gut wall. The emulsifier carboxymethylcellulose (CMC) is used in a lot of gluten free products. Best to avoid most processed foods if you can.
Yes, we'd do best to avoid additives and processed foods.
Unfortunately cellulose can sometimes too be derived from wheat, and my guess is that it follows the same guidelines as dextrose etc. It could therefore cause double effects to someone who cannot tolerate any gluten.
I didn't know that it can in itself cause damage. Thanks for the information 
CMC is derived from wood pulp, it’s found in various food and non-food items. Not a good idea for anyone, coeliac or not!
Following your advice on emulsifiers, I checked my coconut milk - it has emulsifiers. Darn! That was good advice from you.
Hey
Gluten free is a mind field isnt it?
I have been gluten free 3 years and it that time i have been glutened once in amsterdam!
Oh the pain and sickness and had to travel back to london next day...
I have since learnt there are other ways to make ur gut stronger and I CAN ACTUALLY EAT A TINY BIT OF GLUTEN NOW....
So i saw a naturopath who suggested these things as he was ceoliac( so he cant but he knows alot about it)
1. Peppermint capsules.
2. Digestive enzymes
3. Candida tablets
4. STRONG PROBIOTICS
I have been on them now 2 years ans i thought i would try some of my husbands cake on holiday, one mouthful which would normally floor me and NOTHING!!!
Dont get me wrong i wont b running out and buying normal foods as i think i would soon build up a intolerance again but i can b glutened and not die from pain and flu symptoms anymore.👍🏻👍🏻👍🏻👍🏻
Hi Lulububs. Thanks for posting. I'm amazed you only got gluten once, and in Amsterdam, in a whole 3 years. Interestingly I'm reading online about medical marijuana being a good treatment/cure for coeliac - you were in the right city to try that out!
That's good information on strengthening the gut. I'm gone recently to nutritionist who made lots of general recommendations including the probiotic. It's interesting to hear you have experienced a reduction in reaction. That's positive. I've also read about glutamine being a good gut-healer. My aim was to give the dietician advice a good go for 3 months but got gluten this weekend, so p'd about that! I have taken digestive enzymes recently again as well, so good you advise that.
Ha ha I DID!!! And i still do... cbd oil it briliant i didnt wana say anything as i know some people can b abit ANTI cbd oil but ive had nothing but success and i been on it now since amsterdam.
Win win.
Yes i am very into my food so i have not been gluted yet as i make most of my food from scratch and when i go out to eat i make sure they are a well known restaurant for being “ ON IT” with the allergies.
Yes i take my supplements everyday without fail... after my morning brekkie of greek yoghurt and honey and cuppa then i wait 15 mins( as all them tablets should never b taken with anything hot, it kills the bacteria before gets to stomach) .
Only thing i still cannot stomach is bread,yeasty foods?
I still do not eat gluten as the gastro dr explained that just because it let me eat it once it because i have a strong gut but soon as i start eating it again it will start rejecting it again so i wont try that.
Just because you are not having a bad reaction to gluten does not mean that it is not damaging you.
I know that why i dont eat it...
I know that intolerances Build not like allergies that ur born with as i am a epi pen holder as i have severe allergie to shellfish as in i will die allergy.
I just wanted to see if my reactions was as severe as 3 years ago where it would put me in bed and on toilet for 3-4 days and it did not which is good but i would never take the chance of eating it in a meal ever again
I think lots of people using CBD oil. I've tried it a few times for hip pain, and it did take the edge off. There is the the standard type which is perfectly ok to buy in Holland and Barrett or online. I'm not sure it that has the best level for medicinal purposes. Without pushing you to answer on an online forum, do you have a preferred CBD brand?
Yes i use “ cbd brothers” 500mg.
Mouth spray, u spray under tongue yeh it dont taste great but smoking it never tasted great either in my younger days so it does not bother me.
The holland and barratt ones are cheap because there low dose as they cannot sell anything in high street shops over a certain mg.
Cbd brothers was suggested to me by a friend whose sister actually works in a medical marijauma farm as she is a medical scientist.
So i kind of stayed safe in goin with something someone that knows what there talking and ok’d it...
Apparently there a very good farm
Thanks for updating on that. That's good information. I live in the Greater Manchester area and an official medical marijuana clinic has been set up by proper clinicians, but the prices are astronomical. I've contacted someone else who provides website advice, etc, and has been a big proponent for medical marijuana for about 15 years after injuring his back. He as been imprisoned for his 'work' but with the new change in the law for prescription access to medicinal variety, hopefully the clinics will drop their prices.
Mise - thank you for your posts - I've been mainly a reader on here for several years since and the questions you've asked and responses you've had, especially to the question of being glutened, have made me now feel like a pretty normal coeliac. I thought it was just me who got all these feelings that I'd been glutened when eating food supposedly labelled as GF or cross grain symbol. But all that has been said about codex (which I did know but assumed it must be safe as 'they' said so apart from for a handful of Coeliacs) applies to me. There seems to be more than a minority who can't tolerant codex and also I've been really enlightened about all these other additive indredients to food which can cause issues. It does explain a lot about how often I feel like I've been glutened but can't think how since I believed I was ultra careful and strict avoiding gluten. Thank you everyone for all the info
You're welcome Sapphire10! I feel I'm going to be exhausting everyone on here with my questions! It's a really good platform and I've learned tonnes in the past two days. I thought I'd conquered the gluten drama, but far from it. Just a shame our GPs, etc., aren't more helpful on this front. It does seem to be a minefield and some on here are very clued up folk, particularly the posting on GF beers, etc., and emulsifiers. As you state, tolerance levels seem to differ, so one size does not fit all with the 20ppm or the codex. If you are using gluten free breads I've done some checking around and Schar and Genius bread both confirm they don't use codex. Schar can contain soy if you are avoiding that, but it is quite nice bread. The talk of secondary allergies is a bit of a minefield also as I now don't know if some of my being glutened is caused by that (seems to relate to nuts). It's all very stressful, but luckily CBD oil/cannabis oil is gluten free, so that may take the edge off it all!
Thanks Mise. That is interesting about the bread. I am still able to get bread and rolls on prescription and although previously I ordered mainly crispbreads and crackers instead of bread, now I can't, I have been eating Genius bread still on prescription with no adverse effects plus I actually enjoy it! I also have the Glutafin (which is Schar sister company) part baked rolls on prescription and these do make me feel glutened and I note from the ingredients on the part baked rolls Codex wheat starch is mentioned, where as it isn't mentioned in Genius. Maybe Schar use different ingredients or no Codex for general purchasing to those on prescription. I'll probably stop having the rolls on prescription.
That's a shame if it's the prescription ones, but always best to err on side of caution if they are giving you issues. I do like the schar brand.
As long as I stick to tried and trusted brands, I'm usually ok. 99% of the time I make my own food from scratch, including bread. The last time I got glutened was with tesco own brand bread. But that could have been a reaction to some of the additives. Eating out can be a minefield so I don't do it very often. Just rang up a restaurant this week to ask about gluten free options on their menu and was told anything labelled vegan would be OK.....totally not true, since they had vegan burgers in normal wheat bread.
Take care with maltodetrin too. Unless it specifies that's it's made from potatoes or rice, avoid it. I found out the hard way 😕. I took just one calcium supplement tablet which contained maltodetrin from an unstated source and was ill for a week. The caramel colouring in cheap balsamic vinegar is also a problem. Expensive brands don't use added colours and so are fine. I found out the hard way again. Also check stock cubes and never eat anything with gf malted barley......it's not completely gf.
And good luck!
Hi MeTeeCee. Thanks for posting. I had not realised that about balsamic. That's a pain as that's what I opt for in restaurants if the only other option is malt. Hem, it's like a proper old scam to get as much gluten under the radar as possible! I seem to be getting glutened every other day at the moment, and health back to where it seemed to be before I went gluten-free. I don't know if it's cumulative damage from occasional glutening or if it's tolerance level dropped whereby even the 20ppm is a joke now. I've been looking on the Coeliac UK website on the law side, and seems that labeling a product as GF without actually testing it is perfectly ok. I just feel that we are being continually conned with GF products to the point I genuinely believe they are what's actually making me ill now. I'm stringent at home, don't take risks when out, and lo and behold I get ill. All roads lead back to GF labeled bread, pasta, and products.
This is American site confirms what a lot of us have found out the hard way.
verywellhealth.com/symptoms...
That's a really good article. Thanks for sending the link. It would be great if the people at Coeliac UK took this on-board a bit more. I do wonder, out of all diagnosed coeliacs/suspected coeliacs, how many actually tolerate the 20ppm level. I also wonder if you start out tolerant of the 20ppm, but the low grade presence pushes your tolerance down further whilst prolonging damage/delaying healing. The no packaged/processed products seems to be the way ahead but not that massively practical at times. Very honest article though, and more like this would be helpful for putting the issue on the radar.
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