I've got Hashimotos and the symptoms were so extreme I was desperately looking around online for what to do. Community for that on here recommended Dr. Wentz diet which involves cutting out gluten. Life changing.
I was initially cleared as not being celiac from a blood test (that they did amongs a bunch of other test and disnt tell me theu were doing so didnt prep for it). However, based on what I've described to GP they think it was false negative. Offered endesopcy but I'd have to eat gluten for a while and I know that'll put me off work. I think you have to eat if for a few weeks right? So that would literally be 3 weeks of bones feeling like lava, muscles like lead and fatigue that leaves me bed ridden. Not tempting to say the least but you get more support from NHS if you are diagnosed. I'm basically trying to learn to live like I am diagnosed as celiac, but I keep getting things wrong. Like I ate marmite last week and apparently that's not a lot but this week I've felt like I have a constant fever. Only took half a day off work. Couldn't think what made me so sick and so I was thinking what oh what have I eaten... then suddenly thought to check the label....rookie. I proper just need to learn to check the label. Think that cuz it wasn't too much that's why I only had to have half a day off. But it was HORRIBLE being in work and completely reduced my quality of life. I really need to LEARN to check every label or this will keep happening.
Theres no way I could have the test now without having a horrid time before it is there?
Any tips generally on living with this? Also any tips on what to do to help yourself when you have gluten yourself?
I eat really well now and take supplements to help get back what I was missing. I was vegan/ sometimes pescy but have gone full meat eater now to make sure I'm nourishing myself cuz both hashimotos and celiac mean your body finds it harder to absorb nutrients right?
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Flowerpot108
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Its the little things like marmite, stock cubes, gravy powder etc that can catch you out easily when you start (and when we can start eating in friend's houses again that is what you have to watch for and explain!). If you are reacting that strongly to a little gluten then it certainly sounds as though the blood test was a false negative because you had already cut out gluten. Unfortunately you are right, you would have to eat gluten for 5-6 weeks if you want to be tested and made 'officially' coeliac.
I think you are right to go back to eating meat - B12 and iron especially need red meat, and we need extra calcium so plenty of cheese - so vegan and coeliac are a very poor fit. Personally I always believe that getting nutrients from real food is better than from supplements as far as possible.
I am just starting my third year of being coeliac. I have not been badly glutened since 6 months in, when I got better at reading labels and especially at being super fussy when eating out. It was another 6 months before I really took on board the danger of cross-contamination and how important it is. A friend kindly made me a "gluten free" cake in her kitchen, and it seemed fine until I woke up in the night with a nasty mouth ulcer - just caused by cross-contamination in her kitchen. That was just before the first lockdown - I am going to be less polite about accepting food in future! This last year, with no eating out, has made the diet easier - so that's one small benefit of Covid!
Yeah I was wondering how fussy I needed to be about cross contamination as I live in a house share 😬 and I assume when the ingredients have no gluten listed but say made in a factory that deals in it I should avoid that too. Yeah I'm a bit nervous about eating out again having bad all this happen during lockdown.. I did end up glutening myself when I saw my mum for Christmas and I ate some chipolatas that must have had gluten in cuz she was careful about separate stuffing and i brought my own mince pies etc... I just need to be more on it. My health, my responsibility.
Yeah I really miss cheese and am hoping to reintroduce it after going a while not glutening myself. For my autoimmune condition hashimoto's some people cut out dairy and if I cut out dairy I can tell it helps cuz my other autoimmune condition psoriasis clears up 😅 I'm collecting autoimmune conditions you see haha. Might ask GP if I can speak to dietician to see how I can safely reintroduce where possible. Cuz dairy products do really pack a punch of nutrition as well as being tasty.
Yeah defo not eating it for 5/6 weeks hahaha that would be hell 😅 I'll just have to live without diagnosis. They have put on my medical record "likely celiac but refused endoscopy as concerned about symptoms from eating gluten" so it is on there to refer to.
Be VERY fussy about cross-contamination. Never buy any manufactured foods that says anything like "made on premises that also ..." - those products are not safe. Sorry - it is bad news, but not as bad as being glutened! Also - assuming you can eat oats (I have had to give them up) you must buy oats labelled as gluten free - it is impossible to keep oats from contamination with other cereals on most farms as they use the same combines and grain stores.The other source is shared kitchen equipment. I have it easier, as I live on my own, but I do know you should never share a toaster, chopping board, or wooden spoons with other people. Label your food and educate your house-mates about how important it is not to borrow your stuff. Don't share butter or other spreads, including jam, marmalade, chutney etc as they will sometimes put a crumby knife or spoon back in the jar.
I don't envy you having other autoimmune conditions as well - it must make it even harder.
That's ok - I have learned most of what I know from people on here sharing their tips!
You just have to read every label, and re-read. And be aware of the 'hidden gluten' in additives and things going by different names like maltodextrin. Also, do not trust the Coeliac UK food list as it has dodgey items on it. Also familiarise yourself with fact that commercial GF foods are manufactured to a codex level of less that 20ppm gluten, so may not be gluten free enough for you. It's a pain, but it really does come down to being ever-aware and ever-vigilant. Also be careful with the supplements you take as they can contain sources of gluten, so even check those carefully. House sharing - you need your own toaster, chopping board, wooden spoons, spatula and I would argue - saucepans and pans. Guard them for your life, and make sure they are washed on their own, and not with gluten dishes. If you have a dishwasher, don't put your own things in it - they're a nightmare for gluten. Also grill pan is your enemy - get your own if you can, and also keep things covered in the oven as gluten circulates.You need to keep your food separate from your housemates (separate cupboard if possible) and do not let them share your utensils/plates/pans.
I've just completed a gluten challenge to be tested, but thankfully my symptoms are quite mild so I managed to suffer through. The gluten challenge is 6 weeks and you have to eat gluten twice per day. As my partner is coeliac and I wanted to minimise cross contamination risk, it looked like ryvita crackers for breakfast and a cereal bar as an afternoon snack.
Do you live with others? I think that makes it harder. I opted to gluten free at home to minimise risk, but if that isn't an option, you will need a separate preparation area and separate cooking utensils. It's best to have your own shelf or box in the fridge, for butter and jams, the sort of stuff people double dip in.
If you are dedicating your kitchen to being gluten free, it would be best to ditch things like wooden spoons and teflon pans/baking trays, buying new stuff (if you can afford to), as gluten likes to linger in scratches. Stainless steel items are ok.
Take a day to clean the kitchen thoroughly. Bin your toaster, scrub the oven, wipe all cupboards.
In the summer im moving in with my partner who says he's happy to keep the house gluten free, so that'll be nice! As long as it has had a good clean post the last tenants we should be alright 😁. Until then I'd better buy some separate bits and bobs just for me in the houseshare!
A while ago we had posts from a mum of a student who bought a slow cooker (instant pot would also be good as it has more functions, but it's more expensive) and just cooked all meals in that.
If it's just for a short spell, you could probably get away with using temporary measures. If we stay somewhere self-catering we cover baking trays with tinfoil, use toaster bags, chop food on plates. Make sure you use the top shelf of the oven if cooking at the same time as a housemate.
(Just came back to this and realised I repeated my first paragraph, so sorry if you read this earlier and and now wonder where an entire paragraph has gone)
Oh thanks for the tips! That sounds a much cheaper fix! And I was wondering where I would store all these new kitchen items 😂 was thinking my bedroom might be filled with them 😅 toasted bag is ingenius !
keep it simple and eat fresh food - can't go wrong with fruit, meat and veg- just check on your gravy and sauces that you might use with your chicken. Rice is simple and get gf pasta for your bolognese. Easy - I have got an oat allergy too which is very bad - worse than my wheat allergy so I can't eat a lot of the gf food that has oat flour in. But I manage. I was diagnosed at 2 I am now 44 so have lived my whole life being gf. There is so much more on offer than when I was a kid. Just check your labels. You can join the coeliac society and they use to give out a little book which tells you what you can eat - not sure they do that now - but worth looking into.
Thanks!!! Awwwh bless you, I can't imagine not being able to eat oats as well! Yeah the GF aisles have been getting bigger and bigger and some of the items less and less dry! 😂 whole foods are deffo a great shout, as you say its the sauces that scupper me.
I am so sorry you are having such a difficult time. I, also, have been diagnosed with Hashimotos on top of Celiac, DH, and IBS. Mine was diagnosed through extensive blood work done 10 years ago. I, personally, would not undergo an endoscopy or colonoscopy to prove what the blood work and change in diet have already proved.
Like many of us you may have to go completely grain free and have nothing in the way of process or packaged food. I have found that if I stick only to meat, vegetables, fruit, certain nuts and seeds I do well. I hope this helps.
Awwwh gosh! Yeah I seem to be fine with gluten free processed foods although I know I shouldn't eat too much of them as they aren't good for you I am lucky to have them there as a treat! I do feel for you having so many conditions!
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