Well, I did an otc gluten test for sensitivity and it was negative, and I think I had a coeliac test in the past before being diagnosed with ME. I’ve been seriously thinking about going gluten free as advised on here to try it. I have elevate tg antibodies which I found out on here are related to Hashimotos. My last test showed the tgab had gone up again so I wondered if the Hashis is very active at the moment or having a bit of a swing as my tsh bottomed out just below range at 0.1 on 75mcg.
Generally, I haven’t been feeling too bad, but still a bit achey in my joints and my flippin’ weight has been stuck for ages even though I’ve been tweaking my diet left right and centre to be more healthy and trying to do a bit more walking.
Anyway, this last week I cut out bread (was having 1 slice a day) , biscuits(2 rich tea) and pasta(once a week) (so not that I was eating loads of it) and have lost 3lb!…might just be a blip though as that has happened before and then weight bounced back up for no reason. But the main point is - I actually feel a lot better! Not as many aches and pains and generally a bit more energy. Not having griping hunger type pains I was having before. It’s odd because my appetite seems to be more suppressed. The only issue I have had was feeling absolutely terrible after eating porridge oats! Weird! Made me very constipated and bloated like a balloon and felt like I’d been kicked in the guts! It was very strange. Anyone else had issues like this with oats? Is gluten a problem for a lot of hashi people even if not celiac? What is the connection?
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Hi there, I can't eat a bowl of porridge either. Makes me feel bloated and brings on reflux. I put it down to it swelling in my stomach and putting pressure on stomach sphincter. I can however eat oat cakes (ones with no wheat in), and banana/oat pancakes which I've been making for breakfast recently, without any issues. I am not coeliac, and I swither with the gluten free issue. However, over xmas I relaxed, and ate gluten thinking 'well, we'll see how it goes'.... so after a month of gluten my psoriasis was horrendous and my reflux was worse. I'm off gluten again, and my psoriasis is clearing up after a couple weeks without gluten. I think the non-coeliac gluten tests are pretty inaccurate. From everything I've read the food test kits basically react to whatever is in your diet, whether you are intolerant of that food or not. I was reading an interesting paper recently which I'll post if I can find it again. Otherwise, your best bet is to simply go gluten free and see how you feel.
Hi Forestgarden. Thanks for your reply. Strange isn’t it…I felt terrible after being on the porridge for a few days. I have a very vague memory somewhere in the attic space of my brain where I may have had a problem with increased reflux after drinking oat milk. I wasn’t really keen on giving up the gluten but have been surprised at how I have felt this past week or so. My stomach is not “growling hungry” like it was. I’m going to try gluten-free and see how I feel as you suggest. Thanks.
Personally I don't believe in the gluten sensitivity blood tests as there are a number of reasons that someone might have a sensitivity to gluten (or anything else) and it only tests one of them. For some people who get a skin rash from eating gluten they need a biopsy for example.
The only real way to know if a gluten free diet helps you is to try it and see.
If you have fatigue issues generally and especially if you have an ME diagnosis then likely your issue could be carbohydrates in general and not necessarily gluten specifically although it may also be an issue.
Dr Myhill always recommends the paleo diet which is low carb and now paleo/keto as it helps mitochondria to work better.
Upping good fats with eating salmon regularly or adding an omega 3 supplement can help but takes a long time to see results.
Thanks for your thoughts. I’m going to try gluten free and see how it goes. I think I definitely have some kind of problem with food sensitivity. I’ve must been reading about issues with oats, which I seem to have, and read about the protein called avenin that some people can be sensitive too. I still wonder if the ME diagnosis might be more related to being hypothyroid and hashis.
No, not yet. I have to wait for another NHS test. I don’t feel too bad generally, better than I did before levo/on the 50mcg dose. I’ve been pondering the idea of seeing someone privately because I have a funny feeling my tsh isn’t going to pick up any time soon and my gp will just look at it and reduce my dose to 50mcg. It bottomed out at my last blood test - just under the range so luckily the GP said “no action” and was still under range weeks later when I did medichecks. I wonder why some people’s tsh comes down slowly with levo and others just crash like that?
How a TSH behaves is a very individual thing. Be sure to test at 9am or earlier for highest TSH. Leave 24hours between last dose of Levo & blood test also. Stop any B complex 4-7 days before.
Keep going with the iron rich foods. Maybe ad a vitamin C supplement to help things absorb better.
Refuse to reduce your dose if your GP insists.
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Thank you for the advice. I will deffintely follow it. I think I might need to try actual vitamin c instead of the orange juice I was using because the oj just gave me horrendous acid reflux.I then tried black grape juice which has vit c and I can drink no problem, but then I read somewhere that black grape juice might affect iron absorption.
hello Jojolove just a thought… not all porridge is gluten free as might be contaminated with wheat in production/ factory. My friend pointed this out to me so now I’m extra careful to check with Coeliac UK app xx good luck
Thanks Delilah. I love porridge but I’m really reluctant to try it again now. It felt like it had set inside me like concrete! The symptoms didn’t start straight away - took a few days to build up, very strange. I added prunes to it but still ended up constipated and bloated with low stomach ache. All of those symptoms went when I stopped the oats. I read somewhere that people can have a sensitivity to a protein in the oats and that maybe the problem. No idea. I think I might try something different from the gluten free range and see how it goes. I’ll definitely have a look at that app - thanks for that info, didn’t even know there was such a thing!
Maybe overnight soak your porridge and add plenty of fluid …. Check for the GF approval on packet …. Oats should be naturally gluten free but cross contamination is easily done in factories x good luck
I did not test positive on bloods for gluten but I cannot handle it. I had to go gluten free a year before I found I had low thyroid.
I stopped gluten free porridge oats for similar reasons to yours. I have been thinking of retrying it as I miss is. As you say it has protein similar to gluten in it. Congee / rice porridge might be another option ?
From reading on here and other places, I believe I am gluten intolerant and gluten gets through my gut wall (leaky gut) and the thyroid gland munching hashi antibodies attack it/flare up. I then feel rough for a week.
Just read your bio - bonkers isn't it. ... When NHS find you are hypo why do they not test anitbodies and T3 levels. All your years of suffering - feel for you. How much money has not properly checking and sorting thyroid cost the NHS ?
My doctor looked shocked when I said I want to know why I am hypothyroid ? what has caused it ? they then agreed to test antibodies. Surely newly diagnosed people should have T3 measured to make sure they are converting as part of being treated.
My Mum is the same as me with gluten and thyroid. Mum has TSH near 2, T4 mid range but T3 at 10% of range. Results hardly changed over a year. She saw a consultant 20 odd years ago and he said would loose his job if he prescribed T3, when she was still not right.
She has now gone from 75 to 100 mg now. Historically TSH was 2 to 3 it seems with alarm bells being raised if it went below 2 ! She has suffered.
She struggles with finger prick blood tests but many have failed over last year.
I’ve never really considered gluten as being an issue for me, but I’ve been reading lots of studies that relate to gluten and hashimotos disease and the fact that i felt a bit better cutting out bread, biscuits and pasta makes me wonder so I’m going to give it a go and see what happens. Rice porridge sounds like a good option to consider. Thanks for that idea.
Oh yes I’ve had plenty of years of suffering, at times I honestly felt like I was literally dying a slow and painful death. The pain and suffering at least stands me in good stead for getting through the slow and rocky process of finding the right dose of levo! Hehe! I believe I was showing hypo symptoms when my tsh went above 2 which is many years ago. And I wouldn’t have even known about the elevated tgab if I hadn’t have been advised here to get that tested. I think it’s massively important to know the cause of hypo. My GP shrugged when I told him and said something about it showing “maybe a possible auto immune component” to the hypo! As if it was nothing! And I agree with you about needing t3 tested. Mine was pretty much near the bottom of the range.
Your poor mum…I can definitely relate to her struggles. It’s very hard when the tsh is rising but still within what they call “normal” limits. Same with the silly title of “subclinical” that gets thrown around. Makes it sound like a tsh that is just over range means nothing even of the patient is severely symptomatic. Best wishes to you both x
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