Do you feel ill today?

I was amazed to read how long it may take before a coeliac's gut is fully healed - a full seven years. What I didn't realise is that this, according to many articles is also apparent for people who suffer from gluten sensitivity or gluten intolerance - this was news to me.

So far, I haven't been able to find out what the occasional accidental ingestion of gluten does to the gut and the length of healing time it may take for this would-be hiccup to normal gut lining. I will keep looking, for it is something we should all have knowledge of.

In the meantime, I came accross this site which you may like to read as a very special person once said to me the following two statements: 'knowledge is power' and 'the more we can learn, the safer and healthier we can become' ....

injust10pages.com/blog/glut...

21 Replies

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  • Hi, Lynxcat. An interesting article containing a lot of informaton,thank you. I've not read it all yet, but I scanned through to the part about the time taken for the gut to heal. I think it says youngsters can heal in months but adults who have been undiagnosed for years can take one to several years to heal.

    I was told by the gastro, dietician and doc at the blood transfusion service that it could take up to two years to get back to 'normal' . When I told the dietician that I had accidentally glutened myself she said that any healing up to that point would be undone. That was two years ago.

    I had the endoscopy and got diagnosed in Sept 2009, aged 60. My guess is that a few tests have been carried out where people might have been re-endoscoped at different times after diagnosis and the 'two years' everyone quotes is an average. It would be interesting to know the range of healing times that the average was derived from. Mabe it was 1 to 3 years. Since endoscopy is the only way to visibly see if the gut has healed I guess we won't know using that method because we don't get a follow up endoscopy.

    However, if we are anaemic before diagnosis and blood tests show we are no longer anaemic some time after going GF I guess that might be a reasonable indicator that the gut has healed.

    As an aside, I note from the article that those of us who are short in stature due to being coeliac( I'm only 5'-6"), can't expect our growth to increase when we go gluten free. That would have been nice.

  • As for increasing in height you want to put the cuban heels on that you had with that hair Phil...

  • Ha Ha ! Alas, Jerry, the stacks went in the bin around 1977. We all had big hair and big shoes before that... Slade, Roy Wood, ELO, Queen, etc...I use that old pic of myself because I think its funny and is pretty much all I've got left to smile about.

  • Thanks for saying about being made short by coeliac I don't feel so bad now. All my family are tall, women of 5' 6" men of 6' plus and I am 5' 1" I got called titch and felt odd. Now I feel like a member of a club.

  • None of my family were six footers. From the Coeliac group meetings I've been to I've noticed that not many coeliacs are compact models like us, mimms. I wonder about that, because a classic symptom is supposed to be under-development.

    I got called a lot worse than 'titch', and my secondary schooldays were horrendous, with the bullying.

    Some learn to live with being different in height and can make up for it in other ways, but the other supposed classic symptom of lack of confidence and self-worth was definitely one that I suffered from. I don't think I ever got over it, and the anger and resentment still eat into me.

    Taller people are automatically selected for the best jobs and partners, regardless of ability or intelligence. I think they call it the Law of the Jungle. Everything I have achieved I have had to fight for. Nothing has ever been handed to me on a plate.

    Since being diagnosed that feeling has returned stronger than ever as people around me play on the fact that I can't eat or drink the same as they can.

    Maybe life will be better next time around!

  • Thank you philaustin your message means a lot because the only people who teased and bullied me were my family. I had to fight like a demon to even get noticed at home, so I gave up and did well in the real world .I have the advantage of being a woman and I get the " Oh cute " look but you are so right about having to fight for everthing and playing on the you cannot eat stuff and being different it really pisses me off

  • When they test your gut philaustin, do they in fact traul the full length of it? I cannot see how anyone testing a gut can fully confirm something that is up to thirty feet in some people as being normal, mended or fully healed. Adding on to this the bottom of your oesophagus, the full length of your duodenum and the enormous twists and turns of the small intestine to the point of the join of the large intestine.

    The reason that I ask this if of two-fold. As we get older every healing process slows down. Major operations that are undertaken can take five to seven years before a person feel anywhere near to normal afterwards.

    I personally feel that if a person has been undiagnosed with a condition like coeliacs disease for a very long long time then there may be damage that stretches the full length. Added to this the denial and slow learning curve - not realising the hidden dangers in so many products and food stuffs that prevent mending and healing - I think that it is bound to take longer than we would all hope. I am by nature an optimist - I would love to think that a person could be fully healed in a matter of months. I am though a realist and I think that it is probable it may take longer rather than sooner as we all make mistakes in our diet and this undoes the healing process.

    (I'm only 5' 4") ... will have to get out the stilettos, may be!??! Lol!!

  • When I had the endoscopy I watched a video monitor showing my insides and was able to ask questions at the time, but I was so zonked out by the stuff they squirted into my vein that I couldn't really say how far the camera went. They did both ends at the time and I recall, before getting slugged, this huge spool of cable which I asumed had the camera on one end at the side of the operating table. I know they took gut samples from at least two positions because they were marked on a sketch in my medical notes. You would think the health of the gut could be measured by drinking a chemical tracer that could be detected in a blood sample to measure the amount of absorption, hence the efficiency and state of the gut walls /villi.

    Probably non-PC but I am old-school and I reckon stilettos make a ladies legs look beautiful Lol!

  • Well - I have never had one so at least you have seen your gut in a state of mend! Lol!

    I too wished they would bring this sort of medicine into this century and be less invasive - you would think that they could invent a type of ultrasound that could check the whole of the gut easily ....

    I am so wishful ....

    And yes stilettos do look great - but are difficult to buy nowadays even the sweet kitten heels!

  • a chap I know is only 5'2", he was diagnosed at the age of 4 yrs, his 4 siblings are 5'6" plus (even the girls) so maybe you, like him, were destined to be small but perfectly formed :)

  • Diagnosed coeliac 2007. Started probs 2010 suggested endoscopy, was told it wouldnt do any good. After over year discomfort/pain had failed colonoscopy Then ignored by gastro team 8ish months, so had to write and ask why (computer slip up) ha ha ha. Why colonoscopy and not endoscopy cant understand. April told acid, no other info just acid, see you in 7 months. .gp said endo no good. So called care gastro team 21mths so far. Now trying lactose free. Not sure if butter contains lactose.

  • Hi Osborne, Have you fully checked out everything that you are eating? Many of us get problems with pure oats, codex wheat, and gf drinks. Gluten is lurking everywhere. It could be that you may be unable to digest grains - any form of grains - including rice. If you haven't already tried then perhaps try using just simple grasses like millet and quinoa for a while.

    If you know that lactose is a problem - then try using lactose free cheese in place of butter for a while. May be make a simple type scone using chestnut flour/millet flour/chickpea flour/nut flour - avoiding any form of grains and see if that is of help.

  • Hi Lynxcat, Had discomfort a.m. with gf oats &soya with water but added honey..so will try minus honey. Leaving other grain alone for now, apart from 1-2 slice bread daily wiyh jam or peanut butter hardly ever use pure marg or butter. Much better than last couple years so not unduly concerned. Really chuffed when not feeling abd/belly discomfort a real pleasure to feel nothing. Looked out for cheese, really should ask at info desk. Have good intake normal non gluten foods, fresh not in tins. Thanks for advice, drs just write scrips and put IBS but dont tell you. (well mine didnt)

  • Hya, I agree with Phil that this is indeed interesting so thanks for sharing it. I think that you come up with some very interesting facts Lynxcat, so thank you.

    I think what Phil says about it being interesting to know what statistics were used to define the average time the gut takes to heal and I think that would make a great poll for GFG. So where's Fiona? as I shall ask her.

    I was very lucky with my gut recovering because I felt better 10 weeks after diagnosis and I knew that I had responded to my diet. I was diagnosed in my early 40's with severe anaemia after going to give blood. Because I had been so anaemic they were monitoring me closely and I had a second biopsy and blood test and they told me that my villi had recovered and my iron levels were fine so I could be a blood donor again.

    I also think that we have to take into account how slowly the wheels in the NHS turn, in that my iron levels were normal within 3 months but by the time I had seen the gut specialist 6 months after diagnosis then wait for an appt for a 2nd biopsy and then see the specialist for the results of the biopsy nearly a year had gone by as I was well out of the woods and not an emergency.

  • My son was diagnosed at the age of 8. It took him a full year of being gluten free to put on a single ounce of weight. Almost another year after that we still struggle to get weight on him, his relationship with food is a very poor one. I had him at our GP last week and told her he had in fact lost 5 pounds since Easter. First of all she told me to give him more to eat (might we not have tried that one already?) and then she said "maybe we're making a little bit too much of this, Mum?" in the most condescending manner imaginable. I would push it except that he sees his consultant in 3 weeks time. I think he healed quite quickly to start with but we seem to have run in to a brick wall and in fact seem to be going backwards again.

  • Hi Kitty, this is very interesting and I have heard this many times from parents of coeliac children and the ''poor'' relationship with food is what we see as the fear of food and fear of being made ill by food, it's a confidence thing. I'm a bit of a bruiser me and yet I fear being made ill by food especially in restaurants.

    My other comment is that I noticed that Shane your son eats malted cereals, not all countries consider cereals that are malted to be safe for coeliac regardless of the level of gluten. And I always recommend any coeliac who still has issues to avoid these allowed levels of gluten and then see how they feel after a month.

    When I was first diagnosed I didn't eat any prescription foods or processed foods like corn flakes and my body recovered really quickly and when I tried to introduce these foods boy did they make me feel bad!

    And please don't take these comments the wrong way.

    I would ask the consultant what he thinks about low levels of malt etc. and I'm sorry that you Dr was condescending this is just what you do not need.

  • Hi Kitty, This might not be of any use at all, but years ago - and I mean a very long time ago (during the 1950's) when children were in many cases like stick insects, they were often given certain foods which helped them to increase in stature: egg custard - which for a child was beautifully sweet and went well with sliced banana, runny honey, sweetened stewed apples or a dollop of jam and could be served for breakfast, lunch and after dinner treat; sweetened rice pudding - which many mother's served for both breakfast and after dinner pudding - as it's lovely both hot and cold and is nourishing; jam flaps - which were cornflour, egg and milk batter ... this is then used for the following: cut into two-inch squares some gf bread - butter one side - add a liberal spread of favourite jam - dip into batter and lightly fry on each side. What about for a main meal minced pork placed into a frying pan with water, a teaspoonful of good quality brown sugar, a teaspoonful of gf smooth peanut butter, Kallo chicken stock cube, carrots cut wispy thin, butternut squash cut wispy thin, one thin and finly chopped spring onion, a couple of celery leaf tops and a few peas ... when almost done boil a small potato until soft and strain - add a knob of butter and a dash of milk - beat until it looks like cake mixture then serve all together.

    These sort of dishes were used after the war to help children to grow - I know that the circumstances are different but felt that they may be of help.

    Marguerite Patten (often nick-named the Queen of British cookery) wrote quite a lot of recipes which date from around 1940 to 1954 with the aim of helping people to find ways of feeding themselves. Some of her recipes even to this day are useful if you tweak them a little.

    I do hope that your son gains some weight soon - I hope that you don't mind me adding this answer - I have children of my own and I know just how worrying it can be from time to time. x

  • Thanks Lynxcat. A very interesting and informative artcle.

    I whole heartedly agree with avoiding processed foods, like breakfast cereals!

    KittyBling, I do hope you can get some good advice on food to help your son. I can find myself feeling paranoid about food at times but it must be worse for a child. Do you have time to involve him in cooking/preparing food, so that he can see what goes into his meals? I don't know if that would help?

    My son had problems with eating as a child (cerebral palsy not coeliac, so he tended to choke easily) so I let him choose what he would eat, as far as possible, and attempted to avoid any conflict/anxiety. He lived on a very restricted diet for a time but it did him no harm. It seemed to allow him to feel more confident around food. I don't know if this is of any help. Good luck with the consultant.

  • To add my experience to the mix - I was diagnosed in October 2011 and I had a follow up Biopsy after 7 months. I received a letter from the Gastro saying that there had been a marked improvement in my biopsies.

    As an engineering / analytical type person I like numbers so this wasn't really waht I was after - I wanted before you were 10% now you are 80% to give me a clearer understanding of what marked improvement means.

    Should I ask for this do you think ?

  • Hi ianwoowoo, Personally, I think if I were you I would be tempted (especially going through a biopsy) to ask for details to be given and broken down in layman's terms so that you have full understanding of them. You may find that your GP may not be able to do this without referring the results back to the hospital but it is often surprising how much more information you can get by asking.

    Good luck!

  • I actually feel great today and since I went gluten free I have not looked back. There have been accidental gluten episodes but most days I feel better than I have for years.

    I do my own cooking and baking and go to restaurants where I know they understand and cook accordingly for me ( I live in Greece). I carry safe snacks with me and always eat before social get togethers in case there is nothing for me to eat there.

    I avoid free from products as they are full of things I would rather not eat, like soya. It really affects me badly. I try to keep my diet as natural as possible centred around protein, veg, fruit and good oils. Other food is taken only now and again as a treat. I feel great!

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