Another 2 days lost to Gluten....: I cannot work... - Thyroid UK

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Another 2 days lost to Gluten....

Loobs39 profile image
13 Replies

I cannot work out what came first - being Hypo or having a problem with Gluten. I was diagnosed Hypo in 2012 but had a 'problem' with Gluten long before that except it wasn't so much a problem as an irritation. I would sometimes be bloated in the afternoon at work, normally after eating a sandwich for lunch but sometimes not bloated even if I had a sandwich so I didn't make a connection. The first real problem was about 6 years ago when my husband nearly ended up taking me to A&E because the stomach pains were so intense. The same happened sporadically over the next few years but so rarely and with no obvious (at the time) trigger that I still didn't think too much about it. However, once diagnosed Hypo and with a TPO reading of 700 (0-66) I decided to reduce my Gluten intake and now, as I recently posted on here, I have managed to reduce my antibodies to 33 and I am convinced that it is because I finally completely gave up Gluten several months ago. But, and here's the problem, I am now totally 'allergic' to it, so much so that something I could eat a just a couple of months ago (eg mustard) that didn't effect me then, now makes me feel ill. Anything major (like a handful of my husbands French fries 'cos they are only potato - only they aren't and they contain flour) makes me ill for 2 days. Then just before the weekend I made some cookies with gluten free oats and was so ill I thought I had an ulcer until I realised the symptoms were identical to the previous time; chronic stomach pain and back ache for several hours, inability to sleep, then high pulse rate and no energy at all (2nd day) culminating in a severe headache waking me in the early hours. So have I made the situation worse by giving up Gluten? Was I better with occasional stomach ache and high TPO antibodies or was I right to cut back on Gluten? More to the point, have I effectively made myself Coeliac? The problem is, I now view food as an enemy and am losing weight as a result - where do I go from here?

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Loobs39
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13 Replies
Clutter profile image
Clutter

Loobs, You may have oat and wheat intolerance in addition to gluten allergy. Eschewing things which irritate you may make your symptoms worse if you reintroduce them but won't 'make' you coeliac.

Gluten-free has enabled your TPOab to fall which has to be a good thing. Check out the pinned link Gluten Free Chat for recipes. You need to lose weight you just need to eat differently.

Loobs39 profile image
Loobs39 in reply toClutter

Thanks Clutter, it is difficult because I seem to be intolerant to stuff now that I could happily eat a few weeks ago? I had porridge 2 weeks ago using supermarket gluten free porridge and was fine but daren't have it again in case it makes me ill this time. I guess my main query was whether it is better to have low TPO antibodies and a restricted diet or should I not have given up gluten and if so, would my insensitivity not have gotten to this stage?? However, I have to say from the position today of feeling epic (unlike Sunday when I felt sooo ill) the gluten/.oats free diet is very good for you - people keep telling me how well I look and the weight loss has been good (although enough's enough). Right, time to embrace my inner rabbit - salads and fruit for breakfast/lunch/dinner from now on.

Clutter profile image
Clutter in reply toLoobs39

Loobs, If you have sensitivies continuing to eat gluten would make you worse. I think that your body has been healing on your g-f diet and violently objected when you reintroduced it. How about jacket potatoes with your salad? If you're vegetarian you may be B12 deficient. b12deficiency.info/what-to-...

Loobs39 profile image
Loobs39 in reply toClutter

What a lovely thought that my body had been healing, I guess the TPO antibodies reduction sort of shows that. I am not vegetarian by the way (and to be honest I have never been a big fan of fruit or salads) but now juice every day as well as eating loads more veg and salads so it really is making me feel good. Chicken and (home made) chips tonight - with a salad of course!!

crimple profile image
crimple

Loobs, I was diagnosed wheat intolerant over 15 years ago, then hypo 7 years ago and last December diagnosed with raised TPO after feeling very unwell. I read several books about autoimmune disease and diet and I am now gluten and dairy free. I try to prepare food from scratch but do eat some GF cereals and lacto free dairy. MY TPO came right down. Then the other week I ate some cheese and felt very ill for several days. I recommend Robb Wolf "the paleo solution" and Isabella Wentz "the root cause" to help you understand antibodies and diet. My grand daughter is coeliac and just a crumb of bread can result in her being very unwell for a couple of days. Both my daughters are on GF or wheat free. They are keeping an eye on their thyroid function.

You will get used to your diet and it is easier to deal with compared to 15 years ago when people looked on me as crazy or ultra faddy about my food. Be aware that a negative biopsy for coeliac doesn't mean you are not gluten sensitive. Tests for coeliac are not accurate and if you have the blood related coeliac rather than gut related it is more difficult to test for. Hope you get used to your new regime.

Loobs39 profile image
Loobs39 in reply tocrimple

Hi Crimple, I certainly am getting used to my new regime - salmon and a poached egg for breakfast - yum!! I fortunately don't seem to have a problem with rice so I can eat rice cakes (and therefore butter which I also have no problem with) but it is the fear of food and the uncertainty of exactly what I can eat that bugs me - there are an amazing amount of products with gluten which isn't listed on the ingredients as gluten - I need to find a definitive list of brands/products which are gluten free (and I don't mean the products that are sold as gluten free because I have had bad reactions to lots of the breads and rolls from various ranges - not sure why). I have been following Isabella Wentz for a while now - she is good. There is no way I can have the test for coeliac disease now 'cos eating gluten for 6 weeks would finish me off - I will simply eat well (which is basically what it is all about anyway) x

Loobs39 profile image
Loobs39

I can well believe that it is serious because the pain is so severe I can imagine it must be damaging. It must be dreadful to have this problem from a very young age - I find it a pain (literally and figuratively) but I am 58 years old so haven't had to live with it until now. I take Levo and have no problem with that so I guess I am not so sensitive - I do find that if I mistakenly eat a tiny bit I simply get stomach ache for a few hours - it is when I ingest a lot (ie 4 cookies worth) that I really suffer.

crimple profile image
crimple

Yes, ingredient lists are shocking. I can't eat eggs(declared intolerant at same time as wheat) and a lot of GF bread has eggs. Also Soya is a bad ingredient for me and that seems to get everywhere too! An earlier comment about oats has me wondering as I have been eating GF oatcakes, but maybe I shouldn't. I know that the Coeliac association has a list or an app of GF foods and my daughter has a phone app for GF eating places. I think I will have to take an even closer look at the carbs that I eat! I know rice cakes and corn thins are fine, but so boring. I found some rice bread, very dense, in a deli and it is kosher too! It is OK toasted. Warburtons GF multiseed wraps are good if you can get hold of them (Waitrose and Tesco I think) and BFree multigrain wraps (Asda) are also good(bfreefoods.com) Orgran do various bread and cake mixes and Doves farm flours are good. We just have to spend more time making our own food. I have promised myself I will have a go at GF and dairy free icecream using lactofree milk and cream. Choc is a problem, it is a weakness and whilst I like rich dark chocolate it often has too much sugar. As you say eating a healthy diet is the important thing, that's why paleo style is good, back to basics meat, fish, fruit and veg. I am just glad that I do seem to have a bit more control now over this horrible Hashi's thing! Hope you find ut what it is in the breads that causes you problems.

Loobs39 profile image
Loobs39 in reply tocrimple

Well I think that I will leave trying anything for a while - I will make my own 'bread' using ground almonds and coconut flour as that is something I know I can deal with. The oats that made me so ill this time were gluten free and a really good make - I decided to make almond cookies and never considered there would be a problem - lesson learnt pdq!! After being ill the weekend before (that will teach me not to pinch chips from my husbands plate) I bought a small deep fat fryer and now make a tiny batch of my own chips whenever I want - I have tried to follow a paleo diet but get so hungry that I do allow myself rice and potatoes. The other thing of course is that eating healthily is not cheap - I am fortunate that I do not work and have the time to cook stuff from scratch which makes it a bit cheaper but even so, when you see a lasagne for £1.25 big enough for a family of 4, you can understand why people would buy it if they are cash and time strapped. So - almond bread if I can just find that coconut flour I know was in the cupboard!!

in reply tocrimple

Have you looked at the "Even less sugar" range of chocolates from Hotel Chocolat?

All grains have gliadin, a protein molecule similar to gluten, and enough to have sensitivity, regardless if allergic and/or intolerant, for your immune system to attack.

I have tested negative on gluten on numerous occasions and with biopsies. Bread, caused me problems at times but with no adverse reactions. Oats was giving my guts very severe pain and after 12 hrs of having it as porridge.

I have recently decided to go grain free. A few weeks now; so still early in my journey. Although not overweight, I have dropped 1.5 kg in the first week. I believe this was the swelling and the water retention around in my abdomen.

I have read several books to include 'Wheat Belly' written by an America cardiologist called Dr William Davis and he believes wheat is at the bottom of all chronic illnesses and inflammations, diabetes, and much more. Tim O'Brien and Gary Taubes preach for the same thing. All have mentioned the correlation of wheat/gluten/gliadin with Hashimoto's antibodies, etc. Give it a go for 4 weeks, at least, and stop all grains and see how it goes.

Cross contamination with gluten do exist as well i.e. in coconut flower, cocoa powder, and many other ingredients that have been decantered in one place as flour.

Loobs39 profile image
Loobs39 in reply to

Thanks for replying - I am now grain and bread free (even the 'gluten free' bread) and feel loads better - I just have to stay off anything that could potentially have gluten in.

in reply toLoobs39

Congratulations for your strong will and decision. You are spot on to also avoid all 'gluten free' breads etc. I hope this will pay off very soon.

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