I wanted to make a post asking about non celiac gluten sensitivity. I have been gluten free for many many years though not strictly eg worrying about cross contamination etc. I had been operating on the assumption I was on a completely gluten free diet for the last year since starting thyroid meds but found out yesterday the oats I've been eating for the past year are not gluten free and I am aware that non gluten free marked oats can commonly have cross contamination. This has caused me to wonder if I might have non celiac gluten sensitivity as I tested negative for celaic when I was 21 (however I may have already been eating gluten free at this time - I seem to remeber I wasn't told to eat gluten by my doctor for the test) but have always had low ferritin since I was first blood tested at 17 with bouts of bad anemia and despite being on a good dose of thyroid hormones and many symptoms having improved I still have very bad reflux and constipation aswell as continual iron deficiency anemia which I am now aware can be symtpoms of celiac problems.
Another interesting thing is that in February last year I had the highest iron result ive ever had in my life - 90 (15-250) despite not being on an iron rich diet at all - I wasn't eating anything iron rich icnluding meat. I also had the best thyroid levels i've had (5.6 range 3.5-6.5) and so always assumed the higher ferritin was due to that as my thyroid levels haven't been optimal since last april along with very low ferritin again. But now I have remembered that back then I had been on a genuinely gluten free diet for months - I had been very unwell with hypo induced gastroparesis and could only eat meal replacement shakes which I just checked are ceritified gluten free. I introduced T3 shortly after and improved but the month after I started eating the non gluten free oats and a short while after is when I started to go downhill.
I am also aware however that constipation is a hypo symptom as is iron defieiciency and acid reflux does seem to be a hypo symptom for me- it gets worse the more hypo I am but it does seem a coincidence that I suddenly went downhill without a change in dose after the introductioon of posssible gluten contaminated food. It also seems strange to me that I currently have a good but not optimal thyroid level but my reflux and constipation are still very bad and as bad as when I was 10% lower in the FT3 range. Many of you seem quite knowledgable on gluten so I wondered if anyone had any insight on this? Could something as small as eating potentially contaminated oats cause such problems even without celiac?
Any insights/experiences would be hugely appreciated! thank you
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owl87
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Yes it could if you are very sensitive . I can tolerate ordinary oats despite stick re. Other things
Best way to find out is keep food diary and use gluten free oats for a week or two . If you definitely feel better stick with gluten free or try ordinary oats and see if you are adversely affected
So hard to know what’s causing what sometimes isn’t it ..
Thank you for the reply! I have ordered some gluten free oats so I will go an a STRICT gluten free diet and see what happens! Definitely is confusing - so many related issues with hypothyrodism its hard to know what causes what :L
GF oats still may not suit you and can be cross contaminated. I couldn't tolerate gluten free oats or any bought GF stuff - I realised when I started eating more corn/cornstarch as replacement that I was in pain with that too, potato and rice also affect me so I am now completely grain free. Coeliac testing is great for picking up people with late stage disease but misses far too many of the earlier cases where you would have more chance to do something useful to slow progression. And we don't test for NCGS at all. If gluten/grains make you ill, don't eat them - please x
Hello Owl, I tested negative for coeliac in 2007 at Hashi's dx....positive Nov 2020. You may be coeliac Caroline Quinten did a gluten challenge which is on you tube. I would stick with your plan of totally gluten free and see how you feel.
Thank you for the reply! Its very interesting that you tested positive on hashis diagnosis after a previous negative! I was diagnosed in october 2019 and had the celiac antibody test april 2018 so only 1.5 years but my hypothyrodism has had a very fast progression and im 90% sure I was already not eating gluten at least a year before that test! I will and I am definitley interested to see what happens!
I didn't make myself clear there. I was dx Hashi's in 2007 and at that time I tested negative. I think I'm probably the classic 'had it for 13yrs before diagnosis'. It is now causing me a multitude of health problems which is why I recommend that if you think gluten is causing problems just cut it out completely.
The blood test isn't always accurate - the biopsies that have been held up as the 'Gold Standard' are not always accurate. You could do a gluten challenge now and get a negative result - then test positive in 10 yrs.
If you really want to know....I would wait until your health is at its peak, and then consider whether you want to do the challenge. Take care.
Hi, I too was gluten free when tested for coeliac disease, I was told to eat gluten for 2 weeks then tested negative, years later I was told by coeliac uk that I should have eaten gluten daily for 6-8 weeks for a proper evaluation. As the body needs time to produce antibodies I think!? Just to alert you to the fact that I and plenty of others cannot even eat gluten free oats! I react to them the same way I react to gluten. I use gluten free buckwheat flakes instead now. My symptoms were endless incl constipation/diarrhoea, itching, regurgitation, acid reflux, aching joints, mouth ulcers, bloating, stomach pains, depression etc...I am not a medical person but after endless anaemia I found neither my diet or iron supplements helped, I tried lactoferrin supplements for a time and that did improve things. But I think being able to digest food properly is the ultimate goal, so being 100% gluten free and being in good thyroid health really helps, if I'm moving into hypo I cannot digest anything! Hope this helps.
Wow this sounds very like me! The more hypo I am the worse and worse my digestion gets! Last ft3 blood test was at 5.1 (3.5-6.5) so not a terrible result and I have since increased my dose so probably have an even better level of t3 by now but still have dreadful reflux and constipation that really isn’t any better than when my ft3 was 4.8! And this is even though another of my major hypo symptoms extreme coldness is much better! I also have constant bloating, tiredness, lightheadedness and a thrumming body (though I think the last 3 are likely iron related) and iron deficiency/anemia that doesn’t respond to anything! Once in 2017 I was put on a ridiculous amount of ferrous fumurate for a ferritin level of 6 (15-250) (and I wasn’t even having a period at that point!) and it raised to a monumental 22 after 3 months of taking double iron tablets 3 x a day to which the doctor said good enough! I will definitely keep that in mind about the oats! Hoping they’re ok for me because I do love them! 😭 thank you for your reply! 😊
The other problem with a lot of iron supplements is that they cause constipation which is also a common hypo problem! So I had a lot of problems with taking these supplements at the time! I was given the suggestion of taking Spatone a liquid iron supplement which was ok but I was still at the lower end of normal taking a couple of sachets a day. The Lactoferrin which helped my iron levels, I was actually taking it to ward off coughs and colds as I would get everything going including yearly bronchitis it was very helpful for that. It is a bit expensive but may be worth looking into. 🙂
Hi owl87 , I am a little bit late to the party, but here is my take. I know I have a problem with gluten. I am now 47, I knew I had a problem back as a teenager. In my 20's I had dreadful IBS brought on by any thing with gluten. I went on a 'GF' diet. Saw my GP who basically said, the only way you can conclusively know if you have coeliac disease is by a biopsy not just by blood tests, thats a big deal, so if you feel better GF, then just don't eat it!
Fast forward, in my 30's and having (in hindsight) loosely followed a GF diet I developed Hashimotos - an autoimmune disease. There is a lot of evidence that the protein in gluten is biologically almost identical to the proteins (someone will know and correct me here) that are produced some how by the thyroid system. I love oats, yet have never been able to eat them either normal or GF. The whole room will know if I have eaten any ! (ha ha).
I have had real problems with my Hashimotos. I had been diagnosed with ME, I have been told I am a candidate for T3, in the last couple of years I have had some really bad problems with my tendons and aches and pains and now Fibromyalgia has been mentioned. Last year, during lockdown, I relapsed onto a gluten laden diet, with the caveat at the end of 6 weeks I would get a coeliac test. It came back negative.
Now here is the thing. When testing for Coeliac, they test for only 3 known proteins that cause reactions. (Wheat, Rye and Barley) In reality, there are over 400 gluten-like proteins and 40 that have been proven to cause worse reactions then the ones they test for.
I have been seeing an osteopath for the last 4 months. He warned me from the beginning my symptoms were something he probably couldn't help with. His professional opinion was it was something systemic. ie either something I was eating or lacking. I insisted. He tried everything including shockwave therapy and acupuncture. I have had no improvement and a lot poorer. What ever is going on is progressive and over the years I am getting worse and worse.
Last year I thought T3 would be my answer to everything. But, if I am honest, I think the problem is I have an autoimmune disease brought on by something I eat. I don't really want to enter the next 20 years of my life being dependent on the whim of the GP or Endo at the time, on what I am allowed to have or not have in the form of T3 or not T3, more T4 or less T4. I am also getting desperate!
Last week I brought the book, No Grain, No Pain. I am working my way through that. It is depressing... The idea you follow pretty much a paleo diet. Ie Organic, grass-fed meat, organic, sea-caught fish. Organic veg, some nuts and a bit of fruit. Cut out all processed food (including foods branded as Gluten-free), all grains (including quinoa, rice, corn/maize etc). And test and supplement any nutrients that your body has not been able to absorb over the years. The depressing bit is, obviously the longer you have had problems the more likely you are to develop other food intolerances. (The book then goes on about cutting out dairy and legumes, nightshade flowers (as Lapinblanc88 mentions above) and checking all fillers in supplements. Turns out good old prescribed Levothyroxine contains corn starch - a massive gluten-like problem. So that is where I am at. I feel I have tried everything, the only thing left is a complete overhaul of the diet. Certified GF only means there is less then 20ppm of the 3 proteins, so they are laden with corn, rice, and other chemicals and fillers and other gluten-like proteins.
I came on here to find if there were any levothyroxine that does not have fillers that can contain gluten and came across your post. So in answer to your question, yes I think non-coeliac sensitivity is very much a thing. It is a difficult thing to completely conquer and probably is dismissed by many GP's etc. Some people will recover easier than others, some people won't need to exclude so much. So I guess it is a game of trial and error. I naively thought I had been 'GF' for years. I now feel I am just starting my GF journey.
Have a look at Sarah ballantyne AIP diet. I was on the elimination phase for 4 whole months! It was really hard. Basically only fish, meat and vegs for 4months. I learned that I reacted to:
Wine
Cheese in large quantity
Corn
Gf oats
Peppers
Potatoes
Almonds
Large quantity of tapioca ( e.g in quiche)
Xantan and many additives
I'm now off the diet and my aches and pains + antibodies are still at bay.
My night sweat have greatly reduced
I have more energy and joints pain very rarely
My goitre is also gone.
I'm now eating all the above in small quantities from time to timez except corn, potatoes and gluten which make me very ill.
Thanks Lapinblanc88 . I will look at that. Silly really, over the years it always comes back to autoimmune disease and diet!. Did you have any professional help for this, or was it all from your own back, reading up and applying etc? Did you test for nutrient deficiencies?
No professional help. No one wanted to hear my complaints as a relatively young woman ( mid 30's)I researched so much and read studies and health professionals books.
I also left a highly stressful job in TV which was detrimental to my health.
What first alerted me was a blog on leaky gut and it kinda made sense ... Also my mum has 3 autoimmune diseases ( I have psoriasis, endometriosis and I had Hashimoto)
I thought I had nothing to lose by doing the AIP diet and that a very healthy diet could still benefit me. So I went ahead and bought the aip diet book. Really interesting!! Fascinating! Felt better within 4 days. It's not hard if you plan ahead and love vegs. It's harder on the long run. And exhausting to always check every single thing you buy
I used to be deficient in iron, b12 and vitamin D but not anymore. No other tests
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