1. Is there a point where you start healing and become less sensitive?
2. Have you noticed your gluten reactions changing as time passes?
I'd be really interested in some input as I've now been properly GF for about three and a half years and in some ways it's getting harder to manage. I've become more and more sensitive and now react to wheat derivatives and, most recently, gluten grain alcohol. Does this just continue indefinitely? I already react to quite a few things labelled gluten free and have pretty much given up on unfamiliar processed food, as well as dairy and soya.
My gluten symptoms were initially generalised fatigue and concentration problems. When I first went GF a glutening would mean I'd suddenly crash and sleep for hours, and be dopey and anxious for a couple of days after. After I'd been GF for a while they became more about gut ache/constipation/nausea and the dopey anxiety period was accompanied by thirst and sugar cravings. My most recent full-on glutening came on like flu, with shivering - something I'd not had before. More minor reactions (eg maltodextrin) are just a buzzing feeling/poor concentration or very flat mood, but early on I never got these at all.
I'm not complaining – I mostly feel and look well now (to a level where friends and colleagues comment on the change) but I'm wondering if there's a point where it settles down!
I'm not diagnosed coeliac (tested negative some years back but had only been back on gluten for a couple of weeks after six months off) but have had pernicious anaemia for at least five years.
Written by
freelancer
To view profiles and participate in discussions please or .
29 Replies
•
Hi, I have been gluten free since October 2011. I had all the tests done, and they were all negative. However I know if I get glutened. I am usually sick for a couple of days. Crampy stomach, tired, grumpy, headache, achy. I hardly ever eat out, when I do I go to places where they know I have to be gf. Other wise I cook all my meals at home. I make I don't cross contaminate.
It takes time to heal and everyone is different. I am feeling so much better each passing month. At least I can eat more than rice. The good thing about going gf, I lost 12 pounds. I fluctuate 1-5 pounds now. So keeping it off. So that is good.
My advice is read labels and stay as safe as you can. Educate yourself and others. If you share a kitchen with non gf people. Have your own cooking equipment. Keep your counters clean. I even wash my dishes separate from my husbands if I don't put them in the dishwasher. I am extra careful. Using Clorox wipes to wipe the cooking counter before I lay food on it.
Thanks! One big advantage is I live on my own, so have been able to carve out a completely gluten-free environment - it's just complicated going to other people's houses. Yes, I lost 30 pounds (without trying) which I'd put on very fast a few years earlier, which I now identify as being one of the early signs that something was wrong.
I was diagnosed in 2007 following negative blood tests. My dad had bowel cancer at the time and my consultant (treating him too) wanted to check everything. He did an endoscopy and colonoscopy. That's when I was given a positive result. I was immediately referred to a dietician and within 3 days saw Professor Peter Howell who worked at Leeds. He was internationally acknowledged as an authority and leading expert on coeliac disease. He told me that, without symptoms other than during the last few months, I had been coeliac for many years!
Since 2007, I have become more sensitive to gluten, to a point where the smallest amount affects me for several days, like having a bad bout of flu, as well as the usual diarrhoea etc. I was once told by Prof Howell that this is because, in the presence of gluten for a long time (before diagnosis) although doing damage, my system became used to that process and it's effect was lessened. Once the gluten was removed and the damage minimised, any new introduction would spark a full blown reaction. It's that that I experience if I have gluten by mistake.
Sorry to have been so long winded in my reply. The essence of what I'm saying is that, if anything, for me, the reaction doesn't get better, it worsens, which is what the expert would expect.
I think as we heal we probably get more sensitive, because we go from having a damaged, compromised system to a healthy functioning system that lets us know as soon as we've ingested the toxin.
I have been gluten free for 16-17 months now and I react more severely and to more things than I did at first. Or is it that now I am well, I notice the symptoms more because I don't have the "background noise" of constant generalised non-wellness?
Like you I get the flu-y thing very fast now. It's helpful in a way because I can identify the offending item fairly specifically and avoid it in the future.
The "flu" really confused me as I thought it was possibly actually flu. Though it became clear quite fast that it wasn't. The background noise thing is exactly right. I thought my generalised non-wellness was down to pernicious anaemia and was very startled when it went away pretty much overnight on a low-carb diet.
I'll be as succinct as I can, i know how confusing all this can be. I was diagnosed in 2002, after 3 months of starving to death due to the effects of coeliac disease. I really recommend researching what exactly happens scientifically to you when you suffer coeliac disease. It will explain most of everything.
1a. Healing begins right away but can take up to 2-3 years dependent upon the individual and their length of suffering the disease before diagnosisand starting the strict GF diet.
1b. You will never become less sensitive. I do not think you fully understand what gluten/wheat intollerance is all about. It's an auto-immune response, a genetic malfunction. Which is a bit like asking 'When willI I stop blinking when I look into a bright light?' Answer = when your eyes are dead. That being said after fully healing, many coeliacs cheat, and can put up with the symptoms of consuming gluten if not too harsh, as I said, each coeliac is individual, but they are putting themselves at risk of much more dangerous illnesses, such as lymphoma (lymph node cancer). You may feel you are becoming resistant, but in reality you are not. It only fades once in our lives and that is during puberty, returning later in life.
2. Definitely! You become more tuned-in to your coeliac reactions, and as your gut heals and recovers for longer and longer the reactions (remember everyone is different in this) can be lessened than when fully damaged or increased. I always suffered bloating, stomach cramps, migraines, fatigue, depression with my childhood symptoms. But now I am healed and older, they are less severe in general, migraines becoming headaches, but the cramps can be almost as bad. But it is the arrival of diarrhoea and constipation that surprised me, I am lucky I usually get the constipation, which is far less embarrasing than the other one when out in a restaurant or a pub with friends.
Sorry, not as succinct as I wanted to be, and I do not mean to alarm you, but coelaic disease is a serious illness and many treat it lightly, perhaps like some may treat smoking or drinking to excess. Just because it does not make you collapse or swell to the size of a football like an allergy when you eat gluten, it does not mean it can not lead to serious, possibly life-threatening illnesses. If you only had a blood test before, get tested properly again, but I hope its controllable with your current problems only. Best of luck, and eat healthily.
Thanks very much – that's very informative! I hope I have a general grasp of the theory, but the changing reaction is the side of it I've never heard much about from people who'd gone through it . I felt as if I'd got to a point where I understood the signals my body was giving me and then suddenly they all switched... I agree about people not taking it seriously, but how do we change that?
1. I am confused about what I can and can't eat. After I did a FODMAPS elimination diet various foods were on the dodgy list such as mangoes but I have eaten some recently and nothing happened. Also tomatoes were giving me problems but I have been eating them again without problems. I still keep to FODMAPS diet so I know what foods affect me. I usually eat everything from scratch and don't eat out very much, but I do go to friend's for meals and they have been very good at providing GF meals with no disasters.
I have two reactions:
2. For me one of the signs that something is dodgy is heartburn and a general feeling of illness which I find difficult to describe - malaise maybe? This is/was the reaction to things identified from FODMAPS, bacon, cheese (usually containing potassium nitrate), GF oats, anything with Hydroxypropylmethylcellulose and small amounts of glucose syrup (eg in confectionery). I just know not to eat these products.
3. When I have been glutened I have had a violent reaction usually between 4 hours after eating something and I have to stay in the bathroom for 6 hours - I cannot move away from the loo for at least 4 hours. I have vomited on occasions. I feel pretty ill for about 12 hours - usually tired because this glutening happened in the night and I have lost sleep, so I go back to sleep. I feel pretty exhausted from the experience and feel shaky. Once I have got rid of the stuff I am okay but I do take it easy with food for the next 12 hours. I have had this reaction to gluten and glucose syrup.
I have not been diagnosed with coeliac but my GP thinks I probably have it. A FODMAPS diet was so helpful and has made me think I may have IBS too. I do think I can eat some foods that were on the dodgy list but not the ones with the additives. Occasionally my joints/muscles ache but I can't identify whether this is due to anything I have eaten. I had fibromyalgia before I went GF and it seems to have disappeared although I do have some tenderness but nothing like what I had before.
I feel as if I've got off lightly on the symptoms front! I can't do glucose syrup either - it's one of those wheat-derived things that they say are technically GF but for me definitely aren't possible. After a long period of errors I cook pretty much everything from scratch now or buy things I'm very familiar with as it's too anxiety-making. I used to get achy muscles, but they went away and I never identified what was causing them.
This glucose syrup is in so much stuff ..... drives me nuts! Sometimes when people come to dinner they bring me chocolates etc and I have to let everyone else eat them, (and watch them put every single chocolate in their mouths with envy!) or store them away - I have quite a collection now! M & S have a couple of things available and some dark chocolate is okay. I am going to dip brazil nuts in melted chocolate soon and have it for breakfast!
Maybe it was the gluten etc making your muscles ache? I have found that using basic foods I can be creative - bit of a struggle though as neither myself or husband are foodies or imaginative with recipes and stick to the same old stuff which is a bit boring. But as I am on a low carb diet as well as GF means I can have cream and stuff which helps.
You definitely become MORE sensitive as your gut heals. Sorry, your dietician will confirm it. You will NEVER 'recover' and be able to go back to eating gluten. Its something we just have to live with, but at least we are living ......
Cheers, no I know you don't recover, I just wondered if it's an endless journey into greater and greater sensitivity. Was vaguely depressed by discovering that gin had passed into one of the Things I Can't Have, when I was OK with it last year! And the "living" part has generally greatly improved, so I agree...
I've been drinking gin for 50 years, its one of my comforts and I'm SURE it and all spirits are totally safe, so what did you add to your gin (and had someone wiped the glass with a contaminated cloth perhaps?) Did you have crisps, some are tainted with flour?
It's possible it was contamination - I probably ought to do a controlled experiment. It was a drink before a meal but the gin was the only ingredient that seemed potentially dodgy. It wasn't like a straightforward gluten reaction, more like a heavy flattened feeling which lasted two days, a kind of superhangover though I didn't drink enough for that. I've had something similar with wheat-based vodkas, so now I stick to Smirnoff!
I'm working on the basis that I probably am. Because of the gluten reactions, lactose intolerance and pre-existing autoimmune disease. But I have no proof and am not willing to go back on gluten for another test...
You can have an immune reaction to gluten without it being autoimmune. One of the possible mechanisms for non-celiac gluten sensitivity is that the gliadin molecule triggers the innate immune response. So there is inflammation and swelling in the digestive system, the digestion itself is compromised, and and a generalised immune response. It's not the same as villous atrophy but it also needs to heal.
(This one from personal experience - a gluten challenge gave me pain and swelling in the lymph nodes under my arm pits, and crazy cortisol levels that woke me up suddenly in the night. If that's not evidence of immune system involvement then I don't know what is).
Some people with gluten sensitivity may actually be sensitive to the FODMAP content of the wheat rather than to the protein... in which case, reactions may become less serious over time. FODMAP reactions are caused by the proliferation of gut bacteria, rather than the immune system, and when you remove the food source, there are fewer bacteria around to generate a reaction next time.
After about 10 years gluten free I find my reaction to being glutened has become more severe (pain, v&d) but I recover more quickly than I used to.
I developed problems with other stuff, like yeast, xantham gum, lactose. I can now tolerate lactose and have not developed any other food related problems for a while. Cutting right down on sugar seems to have helped my general health.
Another thing I have noticed... and mention of FODMAPS reminds me to mention it... It's that many foods I used to think "upset" me in various ways, such as tomatoes, mangoes, melons, pineapple, kiwi, peppers, are all now o.k. since being gluten free. The only exception (and easily avoided) is the skin of apples.
Like others I have succumbed occasionally to falling ill with sweets (not often because I really am a savoury person not particularly sweet toothed ... but if they're there...!!!). I can only think it must be the ubiquitous glucose syrup.
It's not a "sugar hit" thing, as I am fine on obscene quantities of my own homemade salted caramel popcorn, or lemon mousse, etc. (all made with cane sugar and no syrupy processed toppings allowed in my kitchen).
Maybe those who have restricted their diet in an effort to diagnose and have later gone gluten free might find, as I did, that losing the gluten means you can reintroduce other things. i.e. FODMAPS might have helped when you had coeliac damage but on a healed gut you might now risk some reintroductions?
Goodness knows we have enough to contend with just avoiding gluten!!!
Yes, I think you are right. I'd forgotten that I used to have problems with tomatoes but now I don't.
As I've been reading through these posts I'm realizing that some of you may not be aware that gluten sensitivity is only a symptom of some other disease process going on in the body.
My daughter has Hashimotos Thyroiditis and she reacts badly to gluten. The Hashimotos also affects her blood sugar, her hormones and just about everything else.
She recently had blood and urine tests and she was very low in iodine, iron, vitamin D, protein, B12, folate, zinc, sodium and potassium. She had extremely high cortisol levels and was diagnosed with adrenal fatigue.
She believed the whole process started with a broken marriage (extreme stress) which affects your gut.
Interesting - my whole dodgy health thing (long before I identified any issues with gluten) kicked off after a prolonged period of stress (overworking with a lot of deadlines, bad unresolved issues in love life, unstable home life with several house moves in a short period). I always rather felt as if something got broken then and never quite recovered, even though I'm stable and happy now.
Thanks Aten. I have taken this possibility very seriously as advised by previous posters as I seemed to have symptoms of thyroid problems. My GP did a second thyroid test which she considered normal. I contemplated having private tests but decided against as the result did seem to be normal.
It is interesting what you say about stress triggering the onset because I reckon I have had this problem for years and kept it at bay for whatever reason until I had an accident. It was after this that my symptoms were not relieved and got worse and worse. I never put together some of the symptoms like fibromyalgia with digestive problems etc.
Interesting comments here about what triggers CD, with me I had a very bad stomach bug but with hindsight I had issues when I was a child. I have read that often females with CD found that it was triggered after the trauma of child birth.
Here's a really interesting link about CD triggers:
As for what has changed for me since diagnosis all I have found is that the effect of gluten is much more dramatic since going GFG plus I have other related issues. And now there are many more gluten free options in the shops and in cafe's which's a great improvement as I was diagnosed yonks ago when dinosaurs roamed the earth...well Jurassic park had just been released LOL.
• in reply to
I just read that CD trigger link you gave and my friend with CD almost died from mercury poisoning as a baby. The mercury came from a teething powder that his mother used on him.
Later he developed asthma, had a marriage breakup (emotional stress), uses a Cpap machine at night to breathe, and now has CD and adrenal fatigue with fibromyalgia type symptoms. Long term stresses of whatever sort has to come into it.
He did improve on a vegan SCD there for a while but later started eating gluten again and has gone backwards ever since.
I can't have gluten free flour/products either. I was making lentil & psyllium husk bread from youtube recipe that is bread like but don't really like it so stopped. My allergies cause vocal cords and throat problems plus sour taste. Symptoms seems quicker to arrive if eat wheat that's about it after 10yrs now. Still frustrated with all the food limitations as I'm allergic to all nuts and hypoglycemic too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Confused :( super allergic to gluten but negative result for CD and then told to just get on with it!? Do I get a second opinion? x
How many of you in the UK can eat everything clearly labeled as gluten free?