Thyroid UK

Going gluten free?

Hi,

I was diagnosed hypo over twenty years ago and prescribed levo - 100mg daily. In 2007, 10 mg daily of liothyronine was added. In 2010 the lio was increased to 60 mg daily. For the first time in over twenty years, I felt well again. I lost all the weight I had gained, felt healthy and had lots of energy. I slept well. Apart from regularly arguments with various gps over reducing levo and stopping lio every thing was great.

In late 2014 everything changed for me. I have gained almost a stone and a half, I am always tired and always hungry. If I don't eat every couple of hours I feel really ill - very nauseous, severe headache, very weak and very irritable as my husband will attest! I have no hair under my arms or at the end of my eyebrows. My toe nails grow at a tremendous rate as does the hairs on my legs. I have lots of tummy problems - pains mostly gripey in nature sometimes quite severe and alternating bouts of constipation and diarrhea.

My thyroid tests vary quite a bit although this is partly due to the increased time I stop meds prior to a blood test. One of my blood tests was done within a couple of hours of taking my meds as the endo insisted I have a test immediately!

My gp is not prepared to consider any tests what so ever. If I complain of feeling unwell his only answer is to instruct me to stop lio. I did try reducing by a tiny amount last year and became really ill - I could not function mentally and was really tired although unable to sleep. Gained several pounds. I went back up to my regular dose. He then insisted I reduce levo - again I tried reducing a tiny amount. I was really hungry, severe headache etc. Again I returned to my regular dose.

After reading many articles on this site, I wondered if I should try going gluten free.

I don't think this would be too difficult for me most of the time. I cook most of my own bread so I'm sure I could master a gluten free loaf. I rarely eat cakes, puddings or biscuits.

The big problem that I have and do not know how to get round, is what I eat when on holiday. My eldest son, lives in Stutgart so I travel there four or five times during the spring and summer. I spend one to two weeks there at a time.

I have been a vegetarian for over forty years so eating anything with meat or fish is not an option for me. I have to carry food with me whilst travelling. Going out to Germany would not be a problem but I don't know what I could eat coming back.

I have just returned from Germany and whilst there I made a big effort to look for gluten free food. As far as I could see, it does not exist anywhere near where my son lives.

Can anyone offer me any help or advise on what I can eat whilst travelling particularly from Germany. As we live along way from an airport in England, it takes approx 9 hours door to door. As far as I could find out there is no gluten free option at Stuttgart airport. We regularly visit Italian, German and Indian restaurants, none of them specifically offer gluten free, is there anything that is likely to be gluten free at these restaurants? Are all vegetables gluten free?

Would it be helpful for me to be gluten free whilst at home but eat gluten whilst on holiday? Or am I likely to benefit only if I am gluten free 100% of the time?

Not going to Stuttgart is not an option - my son works very long hours and is not able to come to the UK very often so we have to visit him.

Any help or suggestions would be greatly appreciated.

14 Replies
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Do you have high thyroid antibodies? You need to know. Did GP or Endo ever test these?

If antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, LOW vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working.

Being vegetarian low B12 is more likely.

Always get actual results and ranges. Post recent results if you have them

What supplements do you take and how much?

If you have Hashimoto's then going strictly gluten free is likely to be beneficial.

It does need to be 100% to be effective

I would guess it might be easier to be gluten free than vegetarian in Stuttgart.

Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

scdlifestyle.com/2014/08/th...

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Hi Slow Dragon,

Thanks for taking the time to reply. I do not know if I have thyroid antibodies. I don't actually know what they are. I did speak to my doctor about this a couple of years ago. I was told that the NHS does not test for this. He also said he could not treat me based on private tests. I could not see what paying for this test myself would achieve on this basis.

I was diagnosed vit D deficient about 4 years ago after years of diagnoses of fibro myalgia. Gp prescribed 800mcg daily vit D - no initial booster dose! I was told I must not take any more as I can overdose. I quickly found that 800mcg in winter is not sufficient. I had been taking 1400mcg through the winter. 6 weeks ago I increased this to 1800mcg daily which I will take all year. I think there has been an improvement in the way I walk.

I have been self medicating on Neurovits plus (B1 - 3.3mg, B6 - 20mg, B9 folic acid -800ug and B12 -500ug) daily for several years. I took 500ug of vit B12 daily for years before that.

I did try taking iron tablets but they made me too ill - even the very gentle ones!!

I have had no tests done this year.

In Dec 2016 my vit D level had gone up from 84, 2 years ago to 91 in a range of over 75. My sat Phosphate was 0.75 ( 0.8 - 1.5 ) Not sure why this was tested.

My thyroid function was last tested in Nov last year. Serum T4 16.4 ( 11 - 23 )

Serum T3 4.84 ( 3.1 -6.8 ) My TSH has been suppressed for many years.

My U + E kidney function was also tested - don't know why!

GFR Creatine 90 ( 60 - 200 ), Creatine 60 ( 45 - 84 ), Sodium 140 ( 133 - 146 ),

Uria 3.6 ( 2.5 - 7.8 ), Potassium 4.9 ( 3.5 - 5.3 ) I was told Sodium was a little high but not a problem.

I've no idea what any of these mean/ do ? I was told the usual - they are all satisfactory

I had vitamin / mineral levels last checked in June 2015 - again told all satisfactory.

I was concerned with some results:-

Serum B12 617 ( 187.0 - 883.0 ) This seemed rather low to me as I had been self medicating B12 for years.

Serum Folate 14.9 (1.8 - 18.3 )

Serum Ferritin 29.9 ( 10.0 - 204.0 )

It was after these results that I tried taking iron tablets. I took them for about three months but I stopped because even the very mild ones left me feeling really sick all the time and I had constant diarrhea. Now I take them occasionally for a few weeks at a time.

I've actually found it quite easy being a vege in Germany. My son's lived in Stutgart for 6 or 7 years. We've found a dozen or so places that offer a vege section on their menu. We're very much creatures of habit so visit the same places over again. The local Rewe supermarket also offers a small selection of frozen vege food - mostly burgers and sausages but a couple of other things as well.

It is a bit more of a problem if we travel to a new town. We have walked out of several places, when we've found they don't offer anything vege on their menu - my husband whose not vege finds this very embarrassing. I don't!! If they can't cater for thousands of possible customers then they should not be in business.

We then end up in a kafe house having coffee and cakes.

But, as I said I've never seen anything specifically gluten free on any menu or in the Rewe.

Your help is really appreciated.

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Your ferritin is very low. Normally if can't face iron then eating liver once a week, but if veggie that isn't really an option

SeasideSusie may have some ideas on trying different iron supplements.

All veggies are gluten free. You just need to avoid All wheat, rye and barley

See coeliac UK for info and ideas

legalnomads.com/gluten-free...

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Thanks for taking the time to reply.

No, eating liver is definitely not an option for me! Unfortunately, I've always been hyper sensitive to just about anything I've tried to take. I have problems with all tablets - any side affects they may have, I always get! I can usually put up with the problems for a few days but iron tablets need to be taken for longer and I really couldn't take them for any longer. All I could think of doing was taking them every few weeks for a few days. I know it's far from ideal but don't know what else I can do.

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dizzy864 If you've tried Gentle Iron (iron bisglycinate), I'm not sure there's much else. I did try Ferritin 5mg by Cardiovascular Research but that still made my constipation worse, that's when I gave up iron supplements altogether.

There's Blackstrap Molasses you could try, plus anything on this list of iron rich foods apjcn.nhri.org.tw/server/in... and the only other thing I can think of is liquid iron - some people find it helps, others find it's pretty useless.

There is Mega Food's Blood Builder which someone mentioned recently, I haven't tried it but see what you think amazon.co.uk/MegaFood-Daily... It says they're vegetarian tablets. If you do try them, can you please let me know how you get on, I might try them myself if they help.

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Hi, Thanks for taking the time to reply. Yes, I did try iron bisglycinate adn it was better than the other forms of iron that I took but the longer I took it, the worse I got until I could not take it any longer. it got so that I could not leave the house!!

I took a look at the Mega food. It is quite expensive. It was disappointing that it did not state the actual iron content of the tablets.

I suspect that as it is actually a multi vit that the iron in it is minuscule. I did quite a lot of research on iron tablets and found that the ones that don't cause problems are the ones that contain only tiny amounts of iron.

I also took a look at the iron rich food list above. I do have a banana every day - also good for potassium. I have porridge most mornings with milk so have some iron but most of the iron rich foods are meat or fish or derivatives.

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If you click on the second picture on the Amazon link, it gives the supplement facts and lists iron as being 26mg per tablet. That's pretty good, slightly more than Solgar Gentle Iron.

The Vit C and B12 are negligible but the amount of folate is very good.

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Hi,

Thanks for that, I obviously missed that. It is pretty much the same content as my iron biscglycinate tablets which are actually 25mg.

I doubt they would be any better than gentle iron if taken as directed. My gentle iron tabs were a lot cheaper so I think I'll stick with taking them occasionally.

.

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I usually eat apples when travelling. They provide enough energy and liquid to keep me going.

For something heartier, a rice salad or rice with curried pulses and vegetables could be gluten free. Being uncouth, I don't have a problem eating such fare cold.

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Me neither! lol

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Thanks for taking the time to reply. I need more than apples when travelling home. We leave my son's apartment at 3.45pm for a 7.20pm flight. We arrive home just before midnight - with the clock change it's about 9 hours travelling.

This means that we have to have our main meal at the airport.

Stuttgart airport has no restaurants, just a couple of cafe / bars. Both sell hot and cold drinks and and Rolls filled with an assortment of cooked meats. Neither offer anything else. We usually bring a couple of rolls each with us to eat just prior to boarding the plane and I have another roll as soon as we get to our car this end.

The problem we have with taking our own food is that we are fairly loaded with cases which we need to take on a crowded bus and then two absolutely packed trains - it is rush hour when we travel. We have to be able to pack food that can be securely contained given our cases are banged into and bumped about - hence taking rolls. The other problem is that the temperature whilst traveling is usually in the high twenties to mid thirties so care is needed transporting any food.

It's interesting that you suggested rice because I thought that would contain gluten as it's a cereal. It is a bit of a problem cooking at my son's apartment - it's a typical lads place with very few dishes, pots or pans as he tends to have take out or eat out most of the time as do we when visiting. We don't tend to be in his place much so there's not much time for cooking. It's also a problem buying any pre packed sauces etc - my lack of german means I could not look at labels for gluten free.

I don't think I could eat a cold curry!

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Lots of nice gluten free crackers - eg Nairn have wide range - look in the "free from" section at supermarket

I usually take a couple of boxes away with me for emergency rations

great with cheese, guacamole, thahini, humus etc. With some tomatoes, salad etc

If you have option of cooking or using kitchen first then lots of other options

gourmandeinthekitchen.com/g...

pureella.com/quinoa-chickpe...

the-gluten-free-chef.com/gl...

Beware - soya is definitely not good for thyroid health - obviously there's likely to be more soya in vegetarian diet

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Hi, Thanks for replying.

The problem is not really using a kitchen. It's that my husband and son expect to eat out most of the time. We are on holiday and don't go to sit in an apartment and cook. Eating out is a big part of our german break.

I've looked at all of the places that we regularly eat. The beer gardens and beer fests all offer two vege meals - spatzle which is a type of noodle in a cheese sauce and dumplings in mushroom sauce. Apart from the fact I detest mushrooms both meals contain gluten.

A cafe bar that we visit offers omelets with rolls - I could ask for a double omelet without a roll, but not sure they would understand as I don't speak any german! The only other thing they offer is a quiche which sometimes is vege but again it will contain gluten. We regularly go to an italian restaurant but they offer pasta and pizzas again neither is gluten free. We also go to an indian, I can drop the naan bread but I would guess that the vege curry contains gluten in it's sauce. Again they do not speak any english so I can't ask.

Other than that when out in new places, I can often only find a cafe / bakery that offers anything vege and that's a cake and coffee, again it has gluten. I really have to eat whilst out, I can't wait till we get home.

My husband is not vegetarian and he's never understood why I don't eat meat - he really thought when we got married I would start eating meat again. His father worked at Smithfield's meat market when he was growing up so meat is such an inbred thing for him. He is not understanding at all! He would not give up eating out and I really don't want to either.

I'm not trying to be difficult, I would really like giving up gluten to work but I just can't see how.

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I recommend the Gluten free Summit online to realise why problems with gluten worsen more each time we go back on to it. It has to be GF all the time. I have non coeliac gluten sensitivity and gluten is linked to auto immune problems.

I do find deliveries from Shipton Mill GF Mill excellent, combined with a couple of recipe books from River Cottage. 'Gluten free' by Naomi Devlin and Light and Easy has good ones too. There is a great GF loaf recipe that takes minutes to put together on Shipton mill site.

When travelling I do take some stuff with me a lot. if not home made like soup and bread and cheese, things like tins of tuna, pulses etc can be good. A very small effective camping stove easy to set up and use. A few places are set up for GF but not many. The contamination is to be avoided .. so not everything with gf ingredients is really gf, and much of the commercial stuff is junk food.

I find it useful to think of all the things I can eat. Dr Mark Hyman has some good info on YouTube.

Going to friend's houses is the most tricky, but as I am clear about it and happily turn up with a cooked chicken and some home made gf bread or gf shortbread to share they usually do not mind at all. At breakfast I usually have a couple of eggs rather than their cereal/toast. Nb I cannot use their toaster ... contaminated with wheat crumbs.

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