GP suggests going gluten free

Well I got my blood test results... TSH all the way down to 0.39 and T4 actually increased to 14 + (sorry didn't get printout) So it looks like I'm staying on 75mcg for the time being.

I asked about still feeling fatigued and the continuing edema.  Was genuinely surprised when GP recommended I go gluten free!  I know I'm not coeliac following a past blood test.  So where do I start?

45 Replies

  • Hi Joburton , well if you like your bread as most do  there are quite a few others to choose from. I shop at Sainsburys & they have a 'free from' section for gluten free foods. You could also have a go at making  your own bread with gluten free flour. Also look at  Holland & Barrett and health food shops In your area and on line .Most knorr products are gluten free for gravies etc. It's more expensive but I've always prefered the Warburtons bread to other brands.You could also try sourdough bread it's not gluten free but because the old methods are used to make it, it seems to agree with people.  Can't say that it's made a huge difference to how I feel yet but it's still early days for me. My daughter swears by it though. I think there's  a gluten free group on here. 

  • I know about the obvious barley, rye, oats and wheat, but I'm a bit concerned about falling foul of the hidden gluten in some products.  Mmmm I like sourdough bread :)

  • Just check labels for ingredients, I do that online beforehand so I don't have to spend ages looking whilst I'm shopping. I love sourdough bread too, the old ways are sometimes the best.

  • It seems like a really hard sacrifice at first but it really isn't when you get used to what you are looking for. I am a bit of a hypocrite saying that bcos I do relapse at times usually when I'm watching the pennies, but before you know it you are having gf days without any effort. There really is quite a lot of gluten free stuff. I like the genius products, but I'm aware that supermarket products can be full of sugar in different disguises. Just trying to keep it as natural and unprocessed as possible is the best way   

  • Thank you - I guess it's just a case of changing habits!  To be honest, I usually only grab gluten containing foods when searching for a quick appetite fix (sandwiches, cereals, cake bars, biscuits, etc)  It will probably do me the world of good to cut them out ;)

  • Hi Joburton

    You won't regret getting off the gluten honestly. I started at the end of last September and have lost 22.1/2lbs so far. This is a bonus to me because my weight had shot up and I was struggling. Apart from when I was hyperactive, this is the first time I have lost weight without being on a diet! It seemed daunting at first but it's second nature now. I watch out for Soy too. I gave it up because of all my gut issues and wish I'd known about doing so years ago. Maybe my gut would be in better condition now.

    Sainsburys brown bread is ok toasted. Schar Yorkshire puds are nice. I can recommend Nutribix (only seen them in Tesco so far) for breakfast with goats milk. A lot of the other stuff in the free from range is full of sugar. Knorr gravy pods are gluten free. Loads of stuff is already gluten free out there. I also don't eat after 6pm and drink coconut water (Aldis is good and cheaper at £1.79). x

  • Now some weight loss would be a bonus!!  Unfortunately I don't have a local Aldi nor an Asda... We do have a Lidl though, along with Tesco, Sainsbury and Morrisons.  Innocent Coconut water is currently £2.00 in Tesco so have been making the most of the offer.

  • Joburton have you ever come across anything that helps edema ? It really gets me down not being able to wear my wedding ring, might have to see if I can have it widened. I wear it on my pinky finger now & even thats becoming tight. 

  • No I haven't managed to clear it either.  My wedding ring has been languishing in the jewelry box for at least 12 years.  It does diminish slightly if I drink plenty of water, but any activity tends to make it flare up again.  My hands start 'burning' and puff up, especially in the spaces between the knuckles - it's possibly an allergic inflammation not just fluid retention because it isn't a pitting edema. 

  • Mine isn't pitting either Jo .I was looking over my blood test results yesterday and noticed that although my serum bilirubin level was in range it was low so I googled and read that low bilirubin causes inflammation and lowers antioxidants. 

  • I don't think my bilirubin has been tested...  On top of the systemic inflammation, I get acute reactions at times.  Do you get noticeable urticaria from insect bites or foods or medications?  I'm highly allergic to nsaids and almonds make my lips swell.

  • No I don't but I do suffer from psoriasis and certain food & meds can make it flare.

  • I changed from Levo to thyroid s and some swelling went and the mucin is slowly going

  • If it doesn't grow - don't eat it !

  • Yes, I agree, Gluten substitutes are usually disappointing and often full of sugar, gummy substances and preservatives. Fresh foods are definitely healthier and more delicious but life without bread and cereal can be a bit daunting as it's so much a part of our food culture, GP seems very enlightened.

  • My hubby suggested I try some bread substitutes, but I had to reply that I would rather go without than be disapointed with the alternatives, lol.

    I was very impressed with my GP, walked out of the consultation in a state of pleasant shock.

  • Buckwheat pancakes are nice both sweet and savoury and don't feel like a compromise. They only take 5 mins to make and you can keep some from breakfast to have with lunch.

  • Does buckwheat have a similar taste and texture to regular wheat?

  • Not really similar but I think they're one of the few cases where they taste as good.

  • I'd sign up with You get a wonderful 'bible' of all gf food produced. Basically good food cooked from scratch, watch what you use to thicken sauces and gravies. Remember that junk food is junk food be it gf or not. There are loads of websites and recipes out there and once you get into the swing of it you won't have problems. I found Schar bread to be the best of what was on offer - expensive though but tasted like bread and a good texture too.

    I don't even find eating out a problem, like you I'm not coeliac - I'm trying to reduce my antibodies (it's working) - I have a friend who says it's thanks to non coeliac gf people that he now has a terrific choice when he goes out to eat. Nando's is one of my favourite places to eat - they have a manual that has every single ingredient of every single dish with every single diet catered for. Their food is all cooked fresh too, they are terrific but a huge number of places offer gf food.

    If I am out and need something to eat I buy nuts or cooked chicken, fruit is also good for when you need something in a hurry.

    I'm impressed that your doctor has suggested you go GF - good for him.

  • Ha!  I've just been and got a link to to say almost exactly the same thing ;)

  • You aren't the first to suggest Schar.  Thank you I will look into it :)

  • You have to check every single label .. you will be shocked. It's in Kelloggs cornflakes and liquorice sweets and soy sauce and sometimes baking powder and vinegar and just about everything in the corner shop. 

    You need to find a few staples .. I eat oat biscuits (0ats are safe usually, unless they're grown in fields which had a previous wheat crop) and carry some in my pocket when I go out. Rice cakes, obviously. Go get some different flours, gfree and rice flour, there are many more, for pancakes and cakes. Be very very strict for around eight weeks .. don't share a toaster ... then eat the yummiest wheatfull cupcake you can find and look for reactions. 

    I was off for six months and the first time I ate a biscuit after that I blew up to six month pregnancy size within half an hour.

  • Oh yes, and wash anything like pasta pans used for others v carefully. And don't eat chips out, they are almost always cooked in fryers where bread covered products are also cooked.

    I woudn't touch sourdough bread during this period. You have to exclude every trace of the stuff, as though it is cocaine .. the tiniest trace will have an impact.

  • I don't tend to eat chips anyway so I won't miss them (hopefully) .

  • Yikes!  Within half an hour!  I am really curious if gluten is linked to my 'myxedema'  I had always assumed that it was poorly drained lymph fluid... but now I've learned that could be due to leaky gut...  

  •  I have given up wheat recently, although still eating organic oats. I have also given up sugar it has been a couple of weeks now and I have had lots more energy. I enjoy corn thins which are like rice cakes but made with corn. I think they are gluten free and very nice with peanut butter. I have only given up wheat and have not been over anxious about being totally gluten free but am feeling much better. I have heard that drinking lots of water is good for oedema. It stimilates your kidneys to work better  and reduces oedema. Dont over do it though as too much water can upset electrolights.

  • Hello, thought I'd drop a reply in here as I've been GF for the last few months as there seemed to be evidence to suggest it helps with Hashi's antibody levels. I've had friends go GF and feel amazing and never go back but to be honest it's done nothing for me so far. I certainly haven't felt better, if anything I've felt worse as I've not been able to eat what I would like to and it's a bugger if you go out for dinner! My life does revolve around food so it's quite a sacrifice for me, that's not to say I eat badly, quite the opposite, but I do love to go out for dinner and it ruins that a bit. My bloods are exactly the same as when I started too. I'm persevering because I know these things take time but to be honest if after 6 months nothing has changed, I'm binning the idea. I have to add that I am lucky in not having any gut issues at all. I almost feel guilty that it hasn't worked on me, like I'm some kind of failure, but I know that's silly. I guess my point is that if it works for you then great and it's a small sacrifice to feel better but if it doesn't, you're not the only one! Would love to hear how you get on!

  • It took more than two years for my anti-bodies to drop on a GF eating plan ....  Nothing seems a quick fix - but of course we are all so different.  I subscribe to the theory that the longer we have suffered - the longer it takes to resolve ....

  • There's definitely a lot on whether the gluten/antibodies can escape the gut to have an impact..... I guess that's the decider as to whether it has an effect. Seems to be lots of talk of 'leaky gut' so could be why it helps some and not others? I am (currently) really lucky with having good guts, I've never in 30 years of life had a stomach upset from eating and only had 2 bouts of being ill  with gut issues *touching all wooden furniture in my reach*. Do you feel better GF? I ask as I know friends have really felt a difference within a few months whereas I've noticed no change.

  • You can click onto my name and have a read of my profile - somewhat abbreviated !!  So late in the day I have decided to go gluten free and am happy.  Having read the book - Why Isn't My Brain Working - by Dr Datis Kharrazian - it quickly convinced me to go GF.  Apparently Gluten molecules can permeate the blood/brain barrier and cause inflammation/problems.

    I do not feel hugely different - but am aware that some of the things that happen within are not felt or experienced - especially at a cellular level.  Some people lose weight - I have not.  But then I have just read that having B12 jabs can cause weight gain !  So what's a girl to do !!

  • Sounds like you have found a lot that does work for you, guess we all need to find those things and stick to them! Saw you do a lot of yoga on your profile, I have my first class tomorrow to see how i get on with that. I am a big exercise/fitness freak and one of my big fears is thyroid stopping me from doing this. I've gone down to exercising every other day (from every day!) to give my hormone levels a chance to recover in between so trying yoga on my rest days to keep moving but with less strain. 

  • Again yoga is something we have to keep at - but I am sure you will enjoy the rewards of flexibility. Good not to over exercise as I have read it can use up all your FT3 !!

  • Don't feel guilty!  It's worth a try and if it's not for you then move on.  If you have a healthy balanced diet to start with then you're on a good foundation.  In my case, I basically avoided eating much at all because my size has really got me down.  I'm going to give it a go for at least 6-8 weeks as part of a process of elimination.

    If there's no improvement in my energy levels and swelling, then the GP will consider referring me to an immunologist to see if there's an underlying mast cell issue.

  • Immunologist would be great regardless I would have thought, everyone I've interacted with on here seems to suffer multiple inflammatory issues, while my guts are rock solid, I'm up to the eyeballs with skin and respiratory allergies! Could have the answers for you 🙂

  • I really hope so, I've also got a pretty stable digestive system, It only 'revolts' if I inadvertently eat warmed/melted cheeses like brie, camembert or dolcelatte...  I am redheaded with freckles and have had a lifetime of some respiratory and skin problems too.  However I've got to be a good girl and 'jump through hoops' until I can get onto the next stage!

  • I have a friend who went GF a few years ago now and noticed not a hap'orth of difference but he gets all sorts of side effects if he does eat gluten.

  • If you are into cooking for yourself there are some wonderful recipe ideas on the net.  Some sites have virtual cookbooks.   There are also quite a few freebies on Amazon kindle - though you do have to sort on price.

  • I have kindle unlimited at the moment, great lead - thanks for the advice 

  • And look on the bright can still have Christmas :-0

  • What thyroid medication are you on? Because my odema a was not helped by Levo, I changed to thyroid s and within weeks some of my swelling had gone, I still have a build up of mucin in cells but this is slowly going. I have only started gluten free about a week ago, but don't feel much difference yet I think around week 3 I should start feeling its effects, morrisons have a great free from range and Tesco too

  • On 75mcg Levo, and no noticeable reduction of mucin on body, although face is slightly less 'bulbous' now.  It's been a couple of weeks gluten free, but too early to notice any changes apart from the blessed absence of acid reflux.

  • I seem to be fitting back in my smaller clothes now but I have actually put 3lb on this week , strange as the only thing I have done different is no gluten, did your weight stay the same joburton? 

  • Bathroom scales seem to be stuck, lol.  (At least they're not going up!)

  • Yes so disheartening though

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