I have a chronic autoimmune disease of rheumatoid type, inflammation is a symptom, I self medicate with OTC pain relief and get by. I’ve become unwell this year with new and different symptoms, tests ongoing but high cholesterol , celiac negative, iron ok, abdominal scan clear and endoscopy showed functional dyspepsia. GP days I’m subclinical and dismissed from her (lack) of attention with scripts for omeprazole and Prochlorperazine. I’m reading here every day and learning hence I’m asking is reducing intake of gluten foods enough or does it have to be strictly none to cause improvement?
I’m veggie and don’t supplement, eat well including dairy with plenty fruit and vegetables, gentle exercise, five foot 1 and 8 stone 8 now having lost 16 pounds unexplained within three weeks early this year.
Thanks in advance for any response.
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Stills
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I would completely eliminate gluten for a few months . Then see if you notice a difference . There are lots of good alternatives. Doves farm spaghetti is nice enough even for people who eat gluten . …..
Keep a a food of how you feel each day and all food not eaten
Thank you. GP won’t test and I can’t fund many private tests. From what I’ve read here GP or endo won’t prescribe accordingly anyway and private scripts are way too much and I haven’t got the fight in me for it right now . Sorry to be defeated but members have encouraged me to go gluten free snd I’m starting this week. Thank for all your detailed advice and help.
Thriva has good prices for a full thyroid panel. They also have discounts by referral or first time ordering. They also have a GP contacting you in writing if the results are not in the normal range.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
Post discussing how biotin can affect test results
Am I right to assume you have had all the tests you have had because you lost so much weight without trying to? If you want to be gluten free then I’m afraid you have to be completely gluten free.
They provide a wonderful handbook with every ingredient and food known to man along with information about restaurants etc and a very good website.
I joined a few years ago when I developed inflammatory arthritis yet another autoimmune condition after a couple of years after I recovered from Graves’ disease.
I found it massively reduced my thyroid antibodies (I knew because at that time I regularly did home fingerprick tests) but it also made a massive difference to my IBS. I was never tested to see if I was coeliac - I think I’m probably more likely to be gluten intolerant- but I’m not prepared to eat gluten just to find out.
Yes and then blood tests revealed a red flag for cancer hence the further test’s February onwards which didn’t reveal much. Then in August terrible headaches, migraine and vertigo attacks resulted in a repeat of the same tests plus iron and an ECG which were all ok. An anti sickness med was prescribed to be taken during vertigo attacks and Orthostatic hypotension diagnosed. However since then vertigo has thankfully only happens twice so I’m unsure about that. I’m tired all the time, headaches dnd joint pain much worse but my RA condition was dismissed as the cause. Reading here snd members responses and experiences made me think gluten intolerance. My GP won’t test and what I’ve learned here is no point in private tests as GP can’t prescribe anyway.
I take your advice and will try gluten free as it’s the obvious choice, how many months is necessary ? Thanks for the tips x
You don’t say, but are you taking something for the rheumatoid arthritis? Other than painkillers? I have sjogrens and am taking hydroxychloroquine to reduce the inflammation. Have you had blood tests to look at inflammatory markers, etc by your rheumatologist? RA can cause weight lose too, alongside a raised temperature. Do have a look at the symptoms of something called POTs , again common in autoimmune disorders.
It might be wise to check back with your gp or rheumatologist to ensure all angles are covered in terms of wider blood tests than just vitamins and thyroid ones. You may have done this? Unexplained weight loss needs further investigation and it sounds like you have had some, but not got to the bottom of it? You need to get to the bottom of it, even if it is just your diet? I suspect you may be in a rheumatoid flare and blood tests would show this.
Hello and thank you for your reply. I’m not taking any RA meds and have been off steroids and RA drugs since my mid 20s. Stills has damaged my joints and the pain comes from that combined with swelling and immobility. For the last ten years I’ve felt Stills stirring so to speak and know I probably need a low holding steroid dose to keep it at bay. ESR and CRP don’t reveal Stills activity but the results at ER were ok for these. Drs all looked blank when I mentioned Stills, then looked it up on Google then shrugged saying AI and ignored it. My GP call after hospital visit was unsatisfactory and no tests have been done for Stills activity but I’m trying for tests now. If I knew for certain it was all RA related I’d find the money for a rheumatologists and get prescribed… hopefully.
Hi, just adding from my experience here as in remission from Graves for 6 years now (with small relapse after second covid last year which I managed to quickly quell with my original regimen) - you do need to go 100% gluten free, but it should be fine with the options available today compared to even 4 years ago, so don’t let this change be stressful.
All the advice above is amazing, as usual. I will always cherish this site for the support it gave me as a terrified new mum who had just gone through a thyroid storm and was told the only option was having her thyroid taken out!
I’ll just add a few bits from my experience.
Omega 3 is a great systemic antiinflammatory - very important especially in auto-immune conditions. We need these fatty acids to maintain flexible cell membranes to allow smooth exchange of substances and signals in and out of cells. You can get algae derived Omega 3 nowadays, but do consider actual purified fish oil ones such as Eskimo or Nordic as they are very good quality (I know you are vegetarian, it’s just that Omega 3 is such a potent supplement for our cell health).
Since my diagnosis studies have shown that Selenium is effective at reducing anti TPO antibodies associated with Hashimoto’s.
Digestion and absorption are very important - if they don’t work, then nothing you eat or supplement with will have the expected effect. I would look carefully into/ask why Omeprazole was given - as it stops the cells in your stomach from making stomach acid which you need to break down your food. Also as the broken doen food leaves the stomach, it’s the acidity in it that stimulates the release of pancreatic enzymes needed to further break down food molecules.
The weight loss is concerning - I’ve experienced it with Graves, but not sure how common it us with Hashimoto’s. But when you link this with the cancer red flag you mentioned and adding tiredness and aches and pains I think you should have further investigations linking into the cancer red flag.
What I can say is that if you do go 100% gluten free you will feel the benefits if gluten is the issue. It does take a while for gluten antibodies to calm down, but you should feel a change within 2 weeks - I did, and I was doing a 3 months no gluten trial 6 years ago… I felt so good, I never looked back. I did get glutened a few times over the years by mistake and the symptoms were so immediate and horrible that I am extra careful always. It feels like a big change, but if you think about it most food is gluten free unless a gluten cereal is added to it. What is your biggest worry about going gluten free?
Lots of hidden gluten. Like soya sauce . Tamari is available but more expensive . If we aren't used to reading labels it's easy to have gluten without knowing
Thank you for your detailed reply and help. If I’m honest I feel out of control when usually I'm in control and it’s scary. Plus my emotions are haywire and I’m tearful and sad at the same time enraged and aggressive. I realise this is probably caused by hormones ( I’m also on HRT) and the natural grieving process for my three recent losses. Combined though it’s quite overwhelming.
The PPI was prescribed in February for these symptoms, heartburn, indigestion, increased bowel movements and weight loss. By August when cancers tests had found nothing Dr said take it as required which is rare now as it gives me a terrible headache. The anti nausea med is also take as required and again I try to avoid it as it gives headaches which I have many off.
Your words have galvanised me thank you. I will shop for gluten free flour, pasta and alternate items this week, start a food diary and get on with it. Thank you x
2 ish months? If you buy direct you get a discount by subscribing. Delivery every 2 months is possible and you can delay delivery dates. What I like is that there's no fishy taste and it's more versatile than capsules.
I get mine from Amazon and I see I have ordered them 10 times so far. I bought them originally for my bones - I’ve got osteoporosis, but I find them amazing for my dry eyes.
So sorry, I missed the question here! I use Nordic Supplements - it's purified of heavy metals and has good ratio EPA:DHA, you can have it as a liquid (better price, but fishy taste) or capsules. The liquid gives you 1390mg of total Omega-3 fatty acids, and I would want to take at least 1000mg per day, so this covers it quite well.
For me I have to be gluten-, dairy- & egg-free. If I eat these products, the joints in my hands swell & throb. Stop eating these foods & it all calms down. Cold water therapy/ swimming helps too. No pain killers required. Gluten- free has to be strictly 100% gluten-free. I have Hashimotos hypothyroidism.
Useful reply thanks, goodness know what I’d eat in that scenario but obviously you manage ok. Cold water swimming, I’m impressed by that. Cold is the enemy of all my joints with chronic Stills disease but I do swim twice a week in a warm pool.
Hi we have so much in common! I have reactive Arthritis a flare up at the moment !
I also had cancer flag at same time … same diagnosis!
Last time I had a flare 10 years ago. I went gluten free after not managing the endoscopy 🙈 and felt so much better but had to go completely though and very sensitive to gluten now .
Please follow Becky Excell … excellent blog/ books for recipes that are delicious!
Do you mean you had a cancer scare then diagnosed with Orthostatic hypotension as I was or diagnosed with sub clinical hypothyroidism too. My endoscopy showed nothing nor did the abdominal scan. I have vaginal spotting, I’m post menopause snd several years on HRT.
Oh no sorry it wasn’t cancer thank heavens ! I thought you said was more a functional problem… more lazy bowel. But now I have read your description again
I have underactive thyroid which I have treated with Levothyroxine. I am just through the menopause. But yes try gluten free . I am now lactose free too which often coincides or dairy free .
I hope things improve. I am lucky that my gp s do test things regularly and under NHS rheumatologist now … had to wait 6 months mind. Hope the gluten free makes you feel better everyone said how well I looked after I did and much less tired looking. Good luck ! 💕
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