Can anyone tell me how coeliac disease affects your psychological health. I've read it can make anxiety and depression much worse. Please note I haven't been diagnosed with it, but I have been having stabbing pains in my abdomen and lots of bloating and wind, which surprisingly went away for a while. Unfortunately I've read a few posts regarding how people have been treated under the NHS and it makes grim reading and I know for a fact that if I'm tested for it and no antibodies show, they'll say I haven't got it and I know that's not necessarily the case as it doesn't always follow that no antibodies means no disease. I have Hashimotos and was diagnosed with IBS about 20 years ago. I must admit I want to get tested as there is a much higher chance of having both coeliac and Hashimotos, but trying to get the NHS in general to listen is becoming a bit of a nightmare. Any words of wisdom will be most welcome.
Coeliac disease?: Can anyone tell me how coeliac... - Thyroid UK
Coeliac disease?
It's worth just going for a test, as at least it'll give you a place to start from.
The doctor should really run two tests, the TTG IGA test and the TTG IGG test, IGA looks for antibodies, and the IGG test should rule out false negative. I recently had a test and my doctor didn't think the IGG test was a real thing though, so not all GPs test for it.
Do you currently eat gluten?
I do try to avoid it but it's in so many things,how do I find out which foods contain it without spending hours in the supermarket?
Normally shown in BOLD letters wheat / gluten .. it’s all processed food you need to look out for , just go to the free from aisle , sometimes more expensive … if you cook fresh food you are normally safe , it’s just your stock cubes / flour / soy sauce things like that you need to look out for ..
You need to be eating a large amount of gluten before being tested, otherwise you're more likely to get a false negative. You'll need to do a gluten challenge, which is where you eat gluten at least twice a day for 6 weeks (a meal and a snack), and then go for a test.
If you want to be tested there is no point going gluten free before the test otherwise it will be negative. If the test comes back negative then try gluten free, maybe, and see if you feel better.
Personally I saw dramatic reduction in anxiety as soon as went absolutely strictly gluten free. More on my profile
Majority of Hashimoto’s patients are gluten intolerant NOT coeliac
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
healthcheckshop.co.uk/store...?
Assuming coeliac test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
hypothyroidmom.com/how-to-l...
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Thanks for reply, I do try to avoid gluten but not very knowledgeable about best place to find out which products I can buy that are gluten free. I still want to get tested though to rule out coeliac.
You would need to be eating high levels of gluten, at most meals for 6 weeks before testing
If you know you feel better on gluten free, there’s little point putting yourself through that
It's likely to be more than 6 weeks for an endoscopy after a positive blood test - the waiting list was around 6 months in many places, before the pandemic struck.
That was just to do coeliac blood test …via GP or privately
Yes endoscopy likely many months wait
I had to have private endoscopy
I must have misread 
Hi Sobs1962, I haven’t tested positive for coeliac but like many members who are hypo, I’m so much better being gluten free. Following advice from forum members to try 3 months without it was one of the best things I’ve done for my health. My stomach pains, bloating and digestive issues have disappeared and won’t ever eat gluten again.I also recommend buying a good probiotic like Biokult. I followed a members advice to make my own probiotic water kefir (there are lots of YouTube videos on this if you fancy giving it a try).
I take actimel every day,but my problem is we have a limited budget and gluten free products are ridiculously expensive and my husband thinks all of this is in my head as I have severe depression, anxiety and BPD.
My partner is coeliac, and I can sympathise with how expensive it can be at times. It's generally cheaper if you can switch your diet to foods that are naturally gluten free - it does involve a lot of potatoes and rice unfortunately.
Some supermarkets are working hard to bring GF prices down to be closer to non GF prices, for example Asda and Morrisons are a bit cheaper these days.
Hope this helps
Making water kefir is a very cheap probiotic- the grains cost around £6 on Amazon & last indefinitely if you feed them with sugar water. I’ve found Aldi & Asda sell the cheapest GF bread/ pasta but agree it still costs more.
I get a reaction to a lot of GF stuff as well - I can’t eat GF pasta, sausages, white rice , corn, jacket potatoes - it’s a pain in the ass eliminating stuff. I think I need to try grain free, but I’m in denial on that atm. lol
Hi Sobs1962, I have Hashi’s and for years was told I had IBS. I am now gluten free and def feel better for it. What put me off getting tested for coeliac was having to go back to gluten, feel crap for six weeks, for the possibility that I’d get a def diagnoses. Or not.I already know one answer which is I feel better on a g f diet. Yes it is a bit harder to settle into a new routine. Shopping is important - get the right stuff and you’re not tempted. Get some good gluten free cook books. Take g f snacks out with you (the most difficult challenges can be being caught out and about, hungry but with no g f options in sight), though even that is getting rarer. Being Gluten free seems easier these days. Sorry don’t know if that helps,
Hi I am coeliac and the best place for information is Coeliac UK hive of information and if you become a member there's an app (or directory which can be sent to you) you can scan your food in the shops which stops a lot of confusion with the may contain or made in a factory where gluten is handled etc.
Personally I do not buy many things like this and stick to naturally gluten free foods and try to avoid processed food.
I eat mostly at accredited places where possible, list of places, chains of restaurants are on Coeliac UK website.
Some CCG areas still offer gluten free prescription food, mine doesn't, you can sign up for trial of food, Glutafin they send a hamper out and there's few others to try, as manufactured gluten free products are more expensive in many cases than your typical alternatives, again all on Coeliac UK website.
Myself I had extremely high antibodies but no outwardly typical symptoms we are all different and I had gastroscope but I went privately so all done rather quickly, this was 2013, my GP does my annual checks now under guidance of my gastroenterologist letter which was sent, I'm not sure if this is as thorough with NHS but NICE guidelines should be followed at least.
I had Dexa scan and follow up 5 yrs on follow up was mainly because I'm have joint/muscular problems but all fine.
Having Coeliac disease Psychologically I found no difference or anxiety.
It does or can alter the way you eat out socially and have to consider where eating when out and about, when on holiday etc which might be out of your local area that you know is safe places to eat.
I have had few holidays abroad and had no problems, but does involve researching places, but there's many helpful folk blogging about areas to try.
But the effort of restricting and all the checking in itself can be too much for some.
Gluten can cause neurological problems from reading some papers on it, not all digestive upset symptoms, I fall into the no digestive symptoms but obviously having deficiencies in early days things were bubbling up and at some point it would if presented itself.
As some have said the test usually involves eating at least equivalent of 2 slices of bread or other gluten containing foods daily over 6wks (you have to eat enough gluten for test to show positive in some people (not in my case) if I've not explained that very well please check out Coeliac UK how to get diagnosed.
You shouldn't be diagnosed with any other digestive problem without having a coeliac check, so as this was long ago I'd ask them to now follow NICE guidelines.
There is a chance if your antibodies are high enough they won't want to do a gastroscopy this was bought in last year I think but not sure if all areas of UK do this yet.
I too have hypothyroidism I'm unsure if Hashimoto thyroiditis but most likely the case and from information given and read, getting any deficiencies into an upper ideal level and good diet excluding gluten is helpful for thyroid, is what I've taken from this forum and to have full thyroid panel of which I know many suffer to get from our GPs!
I'm not saying you should do this but I guess it is an option if you're going nowhere with GP and trying to be tested and going private isn't an option, is to omit gluten if you think you feel better without it, but you'll never know what's what, and will need to up your diet in areas eg fibre & B vitamins etc which gluten foods often give us, but at the end of the day unless you have refractory disease only thing you can do for coeliac disease is go on a complete gluten free diet.
I would personally get the test after you've eaten required amount to lessen the risk of false negative test.
I have been doing lots of reading on menopause.
Dr Louise Newson or Menopause Dr (Instagram) highlighted for me a possibility that few of my problems stemmed from perimenopausal symptoms and these can hit us earlier than you think or later even after menopause, it might be something to look at if anxiety is a problem for you.
I started hrt September and made big difference to my problems I'm not completely there but early days I may need few tweaks with dosage, but it may be an area to look at too, just going from my experience.
After all like levothyroxine is given as hormone deficiency for thyroid and metformin for insulin... hrt is same but had bad press from inaccurate studies which have been rectified but everyone only remembers bad news including GPs.
Thanks for reply, I'm beginning to think it's all in my head and it's my severe anxiety that's causing psychosomatic symptoms will try to get tested but I stopped eating bread a few years ago, so don't want to go back to eating it unless it's absolutely necessary, but worried about vitamins and nutrients not being absorbed, it's a bit of a vicious cycle.
Just wondering if you'd had your B12 levels tested, as severe anxiety is just one important symptom of deficiency. I don't think it's all in your head. Research shows that 40% of those with thyroid disease go on to have B12 deficiency, (three in our family have both), especially if you have any kind of digestive problem that might affect absorption of B12, which takes place in the ilium, the lowest part of the small intestine.
This link tells you more about the complex symptoms and difficulties with diagnosis, as well as how to approach your doctor:
b12deficiency.info/signs-an...
Below is latest BMJ research document summary (full document behind a paywall), from which you'll see that there is really no reliable test and deficiency should be diagnosed by symptoms if in any doubt:
This Dutch link also explains more about testing, B12 misconceptions and the importance of early and adequate treatment:
stichtingb12tekort.nl/weten...
PS I found fermented foods - kefir and sauerkraut, etc. really helped long standing digestive issues 🤗
All I can suggest regarding vitamin & minerals is not to exclude too many food groups, unless really necessary (and under guidance of dietitian preferably) as this can cause problems.Has you GP tested anything regarding any likely deficiencies?
Eg Iron, Ferritin, B12 and Folate to mention a few?
Don't be too hard on yourself given this climate it's enough to make anyone worry when things don't add up, completely get the vicious circle it's my experience with thyroid, I thought it was all in my head.
I've just eliminated one thing at a time.
Break things down into manageable things you can do for your health.
Your problems may or may not be manifested due to your anxiety.
I definitely think nutrition and lifestyle is fundamentally the starting point with everything.
Gluten traces are in an unbelievable amount of products, and if coeliac this is a problem and for those highly sensitive to gluten.
If you're still eating other sources of gluten and only given up bread maybe that needs looking at.
All traces of types of Wheat, Barley and Rye and Oats unless it states gf oats, you need to avoid if coeliac, but some coeliacs are also sensitive to the protein avenin in oats too not just gliadin in gluten.
I am 8 yrs on with coeliac disease & hypothyroidism I'm still having Iron and recently a Folate dip, and I'm in negative range now for coeliac disease past 5yrs, so even with my diagnosis all I can do is eat well nutritionally and supplement when problems occurs from information presented from my annual blood tests.
There's only a gluten free diet available at present for coeliac disease, so as long as you eating all the right things you should cover most bases.
Low B12 can cause constipation and very similar symptoms to low thyroid.
You can get supplements, B vitamins are water soluble vitamins apparently it's hard to over supplement these as we pass these out in urine.
I would firstly get checked at Drs, before taking anything.
Drinking enough water getting enough vegetables... if you're having to resort to laxatives go back to your GP.
Anxiety is commonly thought to upset the digestive system both diarrhoea and constipation, my Father would get himself into a perpetual problem.
I think go to GP explain your concerns, they may just say just go gluten free if it's going to cause you so much digestive upset, but they should offer a test and check all your levels and more that I've mentioned.
If your levels are ok and you keep eating a good balanced nutritional diet you should be ok and ask to test annually with your thyroid test... then you will keep on top of any absorption issues.
You will find lots of help on Coeliac UK with what tests are required for testing of coeliac disease and the follow up ones.
Thanks for reply, the problem at the moment with the NHS is they appear to be completely disinterested in anything that isn't covid and getting them to do anything at all is a major fight. My practice are terrible and they just don't care. Thinking of changing practices as was wrong decision to change in the first place.
I think Covid has put many things back, but in time things hopefully will be better.For now until you can get to see a GP who will listen, you could make sure you're eating well nutritionally.
Unfortunately seems like we have to do things for ourselves more until we can get help.
I've used the time to research various aspects ready to be armed with knowledge to present to my GP... although I think I'll have to pay for my tests myself as NHS cannot do all I want, I just want to know if I pay for these tests will my GP act on them.
There is a dna test which you'd have to pay for I don't think NHS readily do them which would let you know if have the genetic disposition to carry the coeliac genes... that said whether it's been triggered will only be found by antibodies.
Ultimately a coeliac diagnosis will only highlight that you have to go on a complete gf diet which you've said you're doing or at least you've cut bread out (that maybe not enough) do you eat pasta, cakes, biscuits and then there's cross contamination and lots of sauces and beer are full of gluten.
Your worry of absorption and some deficiencies, if any, can be highlighted without a coeliac test, which you can help somewhat by making sure you eat well anyway until you see someone.
On another point thyroid could still be the problem it can cause many symptoms.
As others have said again gluten free diet helps some with thyroid.
Hope you get help from your surgery soon.
Having battled with anxiety for many years, I totally understand how you feel. My GP sent me to a psychotherapist with ‘health anxiety’ but joining this forum & reading posts & links helped me realise that anxiety is a thyroid issue. When my thyroid meds and key vitamins are optimal my anxiety is so much better. I find magnesium, mindfulness & aromatherapy all useful in keeping my anxiety at bay. Best wishes to you.
I was referred to a dermatologist in 2019 and have been given creams, lotions and potions for a sore rash I keep getting on my back, which doesn't heal. I get the rash in other random areas aswell. It's not that severe like a typical coeliac rash but very sore.b I'm waiting for blood results as I only had the test the other day, but she did tell me that generally the guidelines are that if blood results don't show antibodies then that's classed as negative for coeliac. She said it is an unreliable test. I have to wait for a biopsy on my skin which is a proven diagnosis for coeliac disease.
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