Non-gut related symptoms - could it still be CD?

[AtemiM]

Hi All

New here and just looking for some opinions on my situation.

As some background, I’ve been struggling with joint pain since December last year. I went to the GP who did:

– nerve test for Carpel Tunnel (normal)

-referred to physio in case it’s tendonitis (it was mostly wrists and elbows at that point with some weakness in my hands and arms). Physio doesn’t think it is.

Move forward to spring and joint pain is now everywhere, plus I’m exhausted all the time, pale and short of breath. Raft of blood tests showed iron deficient anaemia, a raised Rheumatoid Factor (slight raised at around 30 u/mL), raised CRP and Erythrocyte sed rate (again, only slightly raised), and high Thyroid peroxidase antibodies. GP suspects Rheumatoid Arthritis and refers me to Rheumatology. Rheum consultant rules out RA (because no evidence of synovial inflammation).

November now and I’m still having joint pain and now chest pains added to the mix along with terrible tinnitus and worsening pins and needles/ numbness in my arms and weak grip (intermittently). Also noticed my IBS symptoms are much worse. I’ve had IBS since before my DD was born and she’s turning 18 in January.

Back to the GP with this list of symptoms. New blood tests done which show raised CRP and RF again but also Transglutaminase IgA level of 93 U/mL.

The GP has referred me to the Gastro team off the back of the IgA result (but the waiting list here is around 21 weeks from referral).

I guess my main question is, it is possible that it’s Coeliac Disease and would that likely cause the non-gut related issues I’ve been having (joint pain, chest pain, weakness etc?).

Thank you for taking the time to read through if you got this far! Any thoughts appreciated.

Thanks

[Cooper27]

Your symptoms sound like they could be linked to your thyroid issues to be honest. There are a lot of similarities between thyroid and coeliac disease symptoms. Here's a full list for thyroid:

thyroiduk.org/if-you-are-un...

I've been in your position before, with high TPO but normal thyroid results, but I still had a whole raft of thyroid symptoms. I'd suggest joining the Thyroid UK group on here, and asking for some feedback on your results if you have them.

I felt a lot better for working through Izabella Wentz's Hashimotos Protocol (a book), managed to get my antibodies back in range and become a functioning human being again

[Cooper27 in reply to Cooper27]

It's worth mentioning that although coeliac disease typically only affect 1% of the population, it affects 5% of those with hashimotos (the autoimmune thyroid disease you have), so the two are closely linked.

[AtemiM in reply to Cooper27]

Hi

Thanks for the reply. My GP hasn't suggested a thyroid issue. My thyroid antibody level was high but my TSH level has been consistently normal. No mention of a Hashimoto's diagnosis. 🤔

I will do some further research on that. Thanks.

[Cooper27 in reply to AtemiM]

Yes, that's what I had too. High TPO but normal everything else. The antibodies mean you have hashimotos, which is an autoimmune condition in which your body attacks and destroys the thyroid. Eventually you will be hypothyroid, but it's a waiting game for it to happen.

Your doctor won't diagnose you until your TSH and T4/T3 are out of range, but you can feel pretty rubbish in the process.

Do you know what your TSH result was? Typically doctors want your TSH to be above 5 (some even wait for a result above 10) before they'll diagnose, but you're technically hypo if you have a result over around 3.

[AtemiM]

TSH has been raised previously then been fine.

TSH results screenshot

[Cooper27 in reply to AtemiM]

Definitely post this on the Thyroid UK forum - I think you're what they call sub-clinical, which means you're basically hypothyroid, you just don't meet the doctors definition yet. You'll understand what I mean the more you learn about thyroid health.

You must feel quite rubbish right now, but you'll get good advice there.

Do check out Izabella Wentz (aka the Thyroid Pharmacist) she has a blog and gives some good advice: thyroidpharmacist.com/

[AtemiM in reply to Cooper27]

Thanks so much for taking time to respond. I'll post over on the thyroid board later.

[AtemiM]

Antibodies were at 413 U/mL when they were done in June.

[AtemiM]

My T4 was also normal in June

T4 blood test results

[nellie237]

Hi AtemiM,

I'm sorry that you are feeling so unwell. I am Hashi's (since 2007) & diagnosed Coeliac this time last year. I agree with Cooper27 that you should post your thyroid results on the thyroid forum. I believe that the combination of 2 over range TSH + high TPO means that you should have been prescribed Levothyroxine. If your GP waits until either TSH goes over 10, or FT4 goes under range you will be feeling very, very ill.

"I guess my main question is, it is possible that it’s Coeliac Disease and would that likely cause the non-gut related issues I’ve been having (joint pain, chest pain, weakness etc?)."

I have noticed that I've had a lot more joint pain over the past couple of years, but then I'm getting older so who knows? Weakness, definitely related to the Coeliac not the thyroid for me.

I had exactly the same investigations for Carpal Tunnel etc (nerve test & RA also negative) around about the time of the Hashi's dx. Also Plantar Fasciitis is common. It does gradually improve, although my wrists/hands didn't fully recover, they did get worse again at coeliac dx.

Chest pain is a whole different thing. If they've ruled out heart issues, I would suggest that you ask the Gastroenterologist to check your stomach acidity when they biopsy. I was on PPI's for over 10yrs (for reflux), which I have since learned is a really bad idea (I have a hiatus hernia). If you go on the thyroid forum you will read a lot about Hypo's having low stomach acid, and the symptoms being the same as high stomach acid.....so, when I saw the Gastro I asked if this could be checked as I didn't want to stay on PPI's if they weren't needed ........Yes, was the answer. Unfortunately, when I arrived for the biopsy, the clinician had to ask me what the Endoscopy was for because she hadn't heard from Gastro, and that threw me a bit and I didn't think to ask. Covid times.

[Narwhal10]

Hi AtemiM,

Welcome here,

I’ll be brief only because I’m tired. First and foremost were you ever DIAGNOSED with IBS ? Or have you simply put up with symptoms?

Yes there’s over 100 symptoms for coeliac/non coeliac gluten sensitivity which do include joint pain - which I have. The simple way to think of it is - if your gut doesn’t work then the impact is pretty great. It’s only water and vitamin D we get from sunshine. Iron deficiency anaemia is common. Did you have vitamin B12 (also causes pins and needles), folate and calcium levels checked ?

Like Cooper27 said thyroid problems and the 2 do go hand in hand. I’m still learning about thyroid so, knowledge is poor. although I know labs only flag results when the numbers are pathological- meaning disease state. So, people have symptoms but levels are suboptimal but in normal range’.

Hope this helps 😊

[Frodo]

I had improvement from all kinds of symptoms when I (accidentally) stopped eating gluten.

[Ukulelelady1]

Sorry you have been feeling unwell, it sounds like you are struggling a lot. To be honest, isn’t any good anyone diagnosing your symptoms, because it could be any number of things. You need to keep going back to your doc until they find out what it is. They have all the test results, and they know what they are doing.

Having said that, we can only tell you our own experiences, in the hope it may point you in the right direction. I have had similar pain for a number of years, and I have diabetes, hypo-thyroidism, coeliac disease and also fibromyalgia. It was quite difficult getting diagnosed with thyroid disease, but as soon as my diabetes was diagnosed, they retested again and was found to have an extremely low thyroid, my hair was falling out in handfuls, and I was very weak, and walking with a stick (the weakness/shakiness turned out to be withdrawal of amitriptyline, because my body wasn’t absorbing my medication, due to having undiagnosed (at the time) coeliac disease, which rectified itself, once I got my coeliac diagnosis and cut out gluten, it was a slow process, but after a few months started to work, as did my thyroid medication). I also have osteoarthritis, which was early onset due to my hyper-mobility problem. So it was like looking for a needle in a haystack. Fibromyalgia can cause a lot of pain, and it does in fact move around the body, rather than be on place all the time. It seems to take turns in what is going to hurt next, and even chest pains can be put down to that.

I presume your doctor has done an ECG to check your chest pains are nothing to do with your heart? As that must not be overlooked.

As you can see, there are lots of things that can cause your issues, and definitely, coeliac disease can cause joint issues. My own joint issues get worse, if I get cross contamination issues with gluten. Your doctor is the only one that can give you a diagnosis and sometimes, it takes a while before they are in the right path. Don’t despair though, eventually it will come to light what is causing your issues.

[Hidden]

Obvious question: have you actually been tested for coeliac? And if so, was it just blood test, as false negatives are common with the blood test and biopsy should be requested in symptoms concurrent with coeliac. My own experience was gut/joint/nuerological - all symptoms improved/disappeared with removal of gluten - I had to figure that out for myself after a number of years of utterly pointless hospital appointments and tests. One gastro told me emphatically that there was zero link possible between gut symptoms and joint/nerve pain in my hands - he was wrong, I was right. You really will only know if you get properly tested for coeliac, and do not cut gluten out till then. If all tests negative, then cut out gluten and see what happens as there is also non-coeliac gluten intolerance which has many of the same symptoms.