Rheumatologist querying AS?

Hello Sam

I'm guessing you think you may have AS as you are on this forum. I share the family history (my grandmother hhas sero-negative RA and I have a slipped disc (L6/7 because I have an extra / supernumary disc). You need to discuss with your consultant If they are prepared to test for HLA-B27 gene. I also share your concerns about drugs - I am also taking a tramadol every day, despite waiting until the pain is distracting me from doing anything.

If you follow my introdutory threads, you will also find some really helpful information from ropeburn and treatmegently. I have been gluten free for nearly 8 years, which has probably protected me from some symptoms, but I am now going to try the low-starch diet, as it has been validated by an immunologist from Kings College.

Don't give up hope - and don't assume it is AS until you have been thoroughly investigated. The NHS recommends that we become expert patients - I can't put the link or the post will have to be moderated. Familiarise yourself with the NICE diagnostic guidelines so that you can check that your doctors are following them and you get tests within a reasonable timefrrame.

Give yourself a realistic timeframe to remain on the drugs - short to medium term they are not a risk to your long term health.

Stay in touch - we are all here to help each other.

L

Hi Lucy.

The Rheumatology Consultant I saw is querying RA and AS but as only my lower back was showing any inflammation she said it's more likely AS. When my Physiotherapist referred me to Rheumatology she suggested AS too.

I had blood tests today. My blood test form said my DR is querying AS and RA. I'm being tested for Creatine & Electrolytes, Liver Profile, Bone Profile (Ca, PO4 and ALP), Thyroid function, Rheumatoid Screen, CRP, FBC, ESR, Anti CCP and Vitamin D. Hopefully these results and my X-ray will give them a clearer idea of what's going on.

I decided not to take Tramadol anymore due to the toilet probs. It literally took over 15 mins to be able to get started to urinate. Frustrating ! The consultant changed my medication from Naproxen 500mg twice daily to Etoricoxib 90mg once a day taken with Omeprazole and food.

I'm back to the hospital in July unless they see the X-rays and bloods and decide I should have an MRI sooner.

I just want to get to the bottom of this soon.

Thanks

ok you seem to have had all the tests i have except the blood salmonella, shigella and klebsiella - which I think you should have. The course of antibiotics cleared up my peripheral joint pain - now I just need to get rid of the back pain. my vit d was 14 so am being treated with drops but they cause cramps... really you should have an mri so they can see any bony spurs especially in sacro-iliac area.

Thanks. I had the MRI for the slipped disc and as a result of that I know I had a shallow protrusion at L4/5 pushing on the left descending nerve. Excuse the lack of the long medical words. I simplified it. According to my physiotherapist it wasn't an unusual result for someone my age. Only a small minority of people with slipped discs experience any pain or problems with nerves. Plus the injury couldn't be aged so I don't know when it happened.

The next MRI, if ordered, will be of my buttock region. That's depending on the X-ray and bloods result.

I've had the severe elbow pain since before 2007 but when investigated that year it was put down as Tennis Elbow as my forearm muscles were tender and all blood tests didn't show anything on the Rheumatoid Factor.

Hello Sam,

I was at a meeting recently where my rheumatologist who specialises in AS was saying that he is part of a group trying to standardise diagnosis of the disease. One of the questions ask if you respond the NSAIDs (anti inflammatory drugs). People with general back pain such as muscular or slipped discs don't respond as well to this treatment as we AS patients do. The MRI scan can give definitive proof of AS if it shows inflammation of the sacro-illiac joints (excuse the spelling!) This is usually the first symptom of the disease and it can only be confirmed by MRI. There is also a specific blood test which shows a specific gene (I think it is) that is present I in well over 90% of patients.

I'm surprised that your rheumatologist has not confirmed the diagnosis with the scan, although I'd you didn't have any inflammation at the time I suppose it wouldn't show up.

As I've said in other threads, AS is an illness that you can fight against. A healthy active life, good physio and generally following the doctor's orders are good rules to follow.

Furthermore, the psychological side can be difficult; it's you, your friends and family against the disease. Don't let it take over your life.

Good luck with your treatment and stay positive.

Thanks for replying to my post. It's great to hear from other people in a similar boat to me.

I'm waiting for my X-ray and blood results then take it from there. I received my next appointment letter today but unfortunately it's not for a few months which is a but disappointing as I'm keen to know what's causing the pain I'm in. Having read the signs and symptoms of AS online I seem to meet the criteria. It's just a case of trying to find the medical evidence to back up whatever diagnosis the doctors come up with.

It's interesting what you say about Naproxen and anti inflammatory treatment generally helping people with these conditions. Unfortunately it didn't help me and relieve my symptoms significantly. That said I've only been on Etoricoxib 90mg for a few days so it's not really in my system yet.

Thanks very much

Hi

Definitely get the HLAB27 test. If your doctor won't do it - find another doctor.

I got tested in ~2005 after having very similar symptoms to what you described. It was exacerbated by a sprained back carrying a child and slipping.

After a cortisone injection in my sacroiliac joint I discovered the tingling went etc etc as did the bleeding in my bowels! (Nasty stuff).

That's when the rheumatologist suggested the HLAB27 test and voila there it was.

Now all doctors will prescribe something each and every time. I still have diclofenic so that I can compete in long distance trail running events.

But usually I just avoid starch and I am fine the majority of the time. If I “cheat” then I need the diclofenic. It’s very simple.

I use iodine to test for starch in my food (on a sample) prior to eating to ensure I am not putting the harmful stuff into my body.

All the best

Sue

...read the IBS Low Starch Diet by Carol Sinclair, Sam. It was my lifesaver.

(Sorry forgot to add this in, in my haste to post a reply!)

Thanks Ropeburn. I appreciate your post.

I'll look into the Low Starch diet. Out of curiosity how does that affect / improve AS symptoms?

Regards

Hi there

The inflammation of the joints is exacerbated by the consumption of starch. To put it really really basically (to get your interest to read the book) the process of digesting starch in food, by our stomachs, is to break it down and get rid of it. If you test positive for HLAB27 what that means is our molecular structure mimics that of the component in the starch (this is really putting it at a high level - there is more biological and fancy words that describe it more accurately!). So...upshot is:-

we eat starch

our stomach attacks the starch components to break it down for waste

but wait...here is something that looks like starch, only it turns out it is our own body

so we attack ourselves - hence why AS is defined as an Immune Disease.

The upshot is we end up with pain in our large joints, sometimes associated with the onset of inflammation of the bowel and the vicious cycle begins.

I eat NO starch but you can just REDUCE starch and receive the same outcome. Depends how "sensitive" you are in the stomach area.

I used to walk with sticks, be in writhing pain after eating, not be able to transfer weight from one leg to another. (2005)

Today, I am about to embark on a 24km race across the Tararua Mountains in NZ to PRACTICE for the Coast to Coast which is a two day event running 33km and cycling 80km. So to answer your question, it is amazing - the affect starch CAN have on some folk.

I hope you experience the same outcome yourself. You have to be strong to avoid the cereals, bread, pasta and rice!!! Yogurt, fruit and eggs are your best friend for breakfast. I now use protein shakes as part of my training regime! I have also discovered Almond Meal (Flour) which means I can make pizza, pancakes and so on. All goodness.

Keep in touch with your findings.

Regards

Sue

Thanks.

I guess I'm just fortunate to have never had any problems with my bowels or had IBS.

I must admit I'm getting frustrated as the pain I'm experiencing is traveling up to my shoulder blades and sometimes my neck too, usually if I'm sitting in a position for a while such as driving. This coupled with my lower back which is always aching and my elbow pain after being bent is driving me crazy. The last few days I've started taking more pain killers every 6 hours or so.

I can't wait to see my consultant again, although I've got to wait until July. In hoping my X-ray and bloods will show something for her to call me in sooner.

Cheers for your support.

Hi Sam

I have a slightly different take on the starch diet - I have used low and even zero starch at times.

My initial diet changes for my AS were not low starch - but were completely gluten, milk, corn and almost zero refined sugar free. The short story is I got much better for quite a few years - and went from limping with hip pain and shoulder blade and rib pain soreness that was unbearable at times at age 24 or 25 then by age 27 to an almost remission state.

I don't think I am a celiac - I am certainly non-celiac gluten sensitive. Gluten sensitivity goes under the radar because if you test negative for celiac then your generally told OK carry on eating what you want - but there is plent of research out there that blows that argument with so many different proteins in wheat that can impact the immune system.

The main culprit for arthritis - I believe is gliadin as it has been proven to open the intestinal tight junctions in the gut for everyone - not just celiacs - celiacs get the immune response against their guts - but the proteins get modified by the immune system and then can get recognised as joint, tendon, ligaments etc.

Rope burn mentioned low starch - and the culprit isn't the starch itself it is the bacteria that feed on the starch - so in effect we are back to other proteins that can pass in to the gut lining (especially if it is opened up by gliadin) or damaged by heavy NSAID use. Proteins fragments of Klebsiella have been studied but in research other bacteria have also been implicated.

So this is a long winded way of saying that low starch can be 70 to 100 percent for some but there are other factors that can help on there own or are sometime necessary in conjunction with low starch.

My own regime is zero wheat (including no glucose syrups, barley, so no beer😰, corn, soya, very little cows milk) - then I try and keep my intestines as alkali as possible with regular Magnesium and I take zinc for immune support. (There are studies that show Zinc assists the immune system to process foreign proteins cleanly).

There are plenty of forum members that I have read still try low starch but think its ok to drink lager containing gluten - and given the studies on zonulin and leaky gut - I have seen that some say they are still not getting better on low start alone. My most painful times were at age 25 trying to be gluten free but still drinking the odd pint of Guiness - when I switched to wine and cider my arthritis improved greatly - I was eating oats and rye at the time but rarely do today. I eat rice and potatoes often - but rest if I do get any flare.

No drugs since age 26 - plus other things improved hay fever, eczema, brain fog, energy levels - I ran a half marathon at age 30 and still run today at 47.

Also look up silent celiac - as you don't have to have bowel issues to be reacting through you gut lining.

I think the Paleo diet might also be a good starting point for diet and other success stories.

Hope this helps, Sean

Thanks very much Treatmegently. Certainly a bit of reading to be doing. I'll look into it.

I'm not expecting any diagnosis until I see the consultant in July, although I'm hoping to see her earlier (if test results dictate) as the new drugs aren't improving my symptoms and I'm still in a lot of pain. The pain is terrible first thing in the morning. I got up at 4.30am today and walking to the station was very slow. Even the milk float overtook me and I used to be able to race him and win with ease. I'm working on my posture and trying to stay as active as possible. Fortunately today I'm on a patrolling post so can move a fair bit.

Best wishes

Hi guys

My doctor surgery rang this evening saying my recent blood tests showed a vitamin D deficiency and I've got to take tablets for 10 weeks then have more bloods.

Has anyone had this or know anything about it ?

Thanks

Hi Sam

This is exactly how I got my diagnosis. I did have renal and liver function tests to go with it. Can't remember which can be cause and Wick effect. Think renal tests need doing first. I've been prescribed aquadetrim drops as my levels were 14. Which pills have you been prescribed, as not all are absorbed efficiently. I got severe night cramps as a side effect, so had to slowly increase. Beware of that. I'm on them for 6 months at least, but blood tests did site an increase. My calcium levels are borderline so need dexa scan too.