Gluten And Ankylosing Spondylitis

[Deaminated Marcus]

Well my PCP called to tell me that I tested positive for HLA-B27 the ankylosing spondylitis blood test.

 

He had tested me 2 times for HLA-B27 while I was gluten free.

But I only tested positive recently while on the gluten challenge.

 

So even if I never test positive for Celiacs, it certainly was worth it to do the gluten challenge

if only to be able to get a positive blood test for HLA-B27 and get at the bottom of my pain puzzle.

 

Does anyone else with Celiacs also have Ankylosing Spondylitis?

 

Did you get improvements after you went gluten free?

[kareng]

What did they say about Celiac? We're your blood tests positive for that, too?

[IrishHeart]

At one point before my DX, the rheumtologist felt I had AS, but I did not have the HLAB27 gene.

 

He also said the gene is "associated with", not predictive of AS.  You can have the gene, but not trigger it. (just like with celiac).

 

(and the genetic disease predisposition to AS is polygenic; i.e., there are many genes involved, not just HLA-B27.) 

 

There may be an associated presence of psoriasis, chronic inflammatory bowel disease (ulcerative colitis and Crohn’s disease) and Reiter’s syndrome/reactive arthritis.

 

 

Could be you have an inflammatory bowel disease, but not necessarily celiac.

 

The treatment involves drugs, but maybe a gluten free diet might help. I don't think anyone can say for sure.

 

Did you get your results yet?

[greenbeanie]

Thank you for this thread - this is very interesting! I'd never heard of ankylosing spondylitis before, so unfortunately I don't have any useful information about the effects of diet on it. However, I've had steadily increasing SI joint pain since I was in my early 20's. Two MRI's were normal, seven cortisone shots did not help, and in the last few years a similar pain has started on and off in my shoulders and the back of my ribcage. What really caught my attention, though, was that the pain of AS goes away while exercising, which is exactly what mine does (and this has always puzzled doctors). 

 

Anyhow, I'll look into this further if my celiac tests come back negative. For what it's worth, though, my joint pain improved hugely after just three days on a strict gluten-free diet, and returned within 24 hours of starting a gluten challenge. The results were so striking that there is obviously a very clear connection between my joint pain and gluten. If my celiac tests are negative, I guess that would indicate that gluten might have dramatic effects on joint pain even if the pain comes from other causes. If that happens, I'll come back here and post the results once all my tests are in.

[Celiac Mindwarp]

Hey Marcus

Glad to see you at least have some results. I don't know about you celiac results, but mine took ages, 3 weeks or so (and that was after they lost my 1st one at the lab, so I had already waited a month 'growling smilie'). Did they manage to do it all from the same blood draw? Are you waiting for a biopsy too?

Yet more research ahead for you then!

Mw

[Deaminated Marcus]

 Thank you all for the responses.
I'll respond to everyone in one post not to upset the moderators.


Kareng and Mindwrap:
I did the 3 test Celiac panel about a month ago. It was negative.
Then joined the forum.

Then I did the AGA test.
The results will be in at the end of May.

I'm on a waiting list to see another gastroenterologist and I will do
a Celiac blood test just before I see him.
I might just do the DGP-IgG since my Total IgA is low normal.

Celiac Mindwrap: I saw a gastroenterologist about 2 weeks ago

and he wasn't helpful to put it nicely, so I'm on a waiting list for another gastroenterologist to have the scopes.
I'm still eating bread.
Yes more research...sigh... then I have to explain it to the doctors LOL.


My PCP re-did the HLA-B27 and he called me to say they were positive.
He said it was because I was back on the gluten.
(In the past I was gluten free when he did the HLA-B27 test.)
I just got a copy of the report today, and it was a downer.
Had they interpreted it that way back then, I would have tested positive.
So I suspect that I tested positive this time simply because the method of interpretation changed.

Irish Heart:
I am thinking along those lines too.
Going gluten free could have helped Chrones or colitis or Celiacs.
I think I have one or more of these in combination,
that is why we are trying to find the exact cause.
I'll know for sure when I get scoped.
And I know now other foods cause me pain. (red kidney beans etc etc)

The first gastro doctor said I don't have A-S but now we have the blood work to prove it.
I heard the second gastro doctor doesn't believe there is a link between inflammatory 
bowel disease and arthritis etc but I won't know till I see him.
Some specialists only know about the organ they work on and don't see a connection with other parts of the body.



greenbeanie, I have a lot to ask you...

Did you do the HLA B27 blood test?
Is your forward bending limited?
Is it just one SI joint that hurts?

Parts of your story above sounds a lot like mine.
But now exercise hurts my si joint.

 

Were you eating bread before your Celiac blood test?

[janpell]

I found I couldn't rid of my joint pain until I eliminated gluten and all the other inflammatory foods - nightshades, citrus, dairy, high carb diet, soy, alcohol, caffeine. From this point, I had to journal everything - symptoms, when and what I ate, all my supplements, etc. In the beginning a lot of foods caused pain, swelling and rashes. The neck pain was unbearable though. I found the longer I kept gluten out I could slowly introduce other foods. Just be focused on your body and work from there. Medications didn't help me much in the past and I accepted it as a way of life. Glad I found so much info on gluten intolerance.

[Celiac Mindwarp]

Hi Marcus

I tested negative too, but the reduction in all sorts of symptoms has been phenomenal. I have ended up paleo plus rice, with several intolerances on top of gluten, including dairy, soy and corn. I had back and neck pain, shoulder, was treated for repetitive strain injury in my hands, plantar faciitis, migraines etc. I had physio twice a week to get out of bed at one point.

I am now walking several miles a day, no physio for months, and considering returning to work full time.

Sorry to hear your GI experiences were bad hope the new one is more helpful, and that you are able to get back to gluten-free soon. I didn't agree with mine on everything,and my endoscopy was rubbish, but I wrote down my history, and my response to the gluten challenge and gluten free, and he used this to diagnosis ncgi. He also took my list of questions and WROTE to me to answer.

(Look, no questions this time! )

Hopefully your jigsaw is coming together. Very good luck

Mw x

[greenbeanie]

greenbeanie, I have a lot to ask you...

Did you do the HLA B27 blood test?
Is your forward bending limited?
Is it just one SI joint that hurts?

Parts of your story above sounds a lot like mine.
But now exercise hurts my si joint.

 

Were you eating bread before your Celiac blood test?

 

My overall forward bending isn't limited, though my neck and shoulders are quite stiff. The SI joint pain has always been only on one side. I sometimes wonder if it could be caused by swollen lymph nodes in my groin pushing on some nerves. I haven't had the HLA B27 test. They did all sorts of x-rays, an MRI, nerve conduction tests, and a bunch of other stuff that did not identify the problem. I finally stopped going to the back doctor after several years of expensive treatments that didn't help at all.

 

I'm meeting with a new doctor next week to discuss celiac testing, so I haven't had the blood tests yet. I finally switched after my previous doctor kept ignoring my concerns. This doctor does seem willing to order the tests - in fact, she seemed willing to diagnose me with celiac from my health history, symptoms, and reaction to dietary changes alone! But I really want the tests so that I know for sure. My four-year-old daughter has similar symptoms, and I will aggressively pursue testing for her if I have celiac. I did a brief gluten-free trial last month (less than two weeks) and had immediate improvement, then had an even worse relapse once I started a gluten challenge to prepare for testing. It's pretty miserable, but I can stick it out for a few more weeks.

[Deaminated Marcus]

janpell, that's good information about the food intolerances.
I figured some out for myself and I did a blood test to confirm some and find new ones.


Celiac Mindwarp,

It's good that you will be eventually be feeling well enough to get back to work.

You had a good GI doctor, mine said you don't fit the profile despite my childhood fitting it to the book.

Thank you for the encouragement.

greenbeanie,
It's good that you found a doctor who is digging for the cause.
I finally found one in 2011.
My problem is I look young despite my age and slimmed when I was gluten free so they think I'm doing fine.

I too have the one sided si joint pain in the morning and now I can get it during the day.
I sometimes wonder if it was caused by the full contact martial arts I used to do in my 20's.
I attributed my shoulder pain to carrying heavy tool boxes.  It started at an exercise class.

My PCP had previously eliminated A-S because my back x ray showed thick lower back disks
which surprised me in view of the work I used to do of carrying heavy materials on my shoulders.
So what you wrote about the MRI not showing anything is reassuring.

Where the expensive treatments chiropractic adjustments?
I plan to get adjusted eventually when I have the pain figured out.

The reason to test for Celiac is that I went gluten free and then all the pain returned the next year.
I did the food journal thing like janpell did and later I did the expensive food intolerance test.
When I did the Celiac panel about a month ago it came back negative.

A-S can be associated with ulcerative colitis and Crohn’s disease so I want that and Celiac to be checked out.

I always had swollen groin lymphnodes but was told it's ok but it's interesting you mention this theory.


This is the Celiac panel I did: total IgA
                                              tTG-IgA,
                                              DGP-IgA
                                              DGP-IgG

 

There are other tests also.

tTG is the doctors' favourite but it can miss Celiac.



Well the weird news is that my pain is a lot less this week despite reintroducing cheeze last week
and eggs this week, and dates.
I had pain this morning but it didn't last.
I was having horrendous shoulder pain a few weeks ago and now it's fine.
The weather is bad but my shoulder is still fine.
I'll eat tomatoes for supper to see if I can bring back a good wave of pain. 






 

[Rickie]

Well my PCP called to tell me that I tested positive for HLA-B27 the ankylosing spondylitis blood test.

 

He had tested me 2 times for HLA-B27 while I was gluten free.

But I only tested positive recently while on the gluten challenge.

 

So even if I never test positive for Celiacs, it certainly was worth it to do the gluten challenge

if only to be able to get a positive blood test for HLA-B27 and get at the bottom of my pain puzzle.

 

Does anyone else with Celiacs also have Ankylosing Spondylitis?

 

Did you get improvements after you went gluten free?

I have AS. It can be difficult to diagnose for some people. HLA-B27 is a genetic test. It doesn't change over time and you cannot become positive. Several genetic markers have been associated with AS. HLA-B27 is by far the most informative. Since most people with AS have HLA-B27. Yet, being positive for that gene alone does not indicate anyone has AS. 7.5% of white people in the USA have HLA-B27, yet less than 5% of those people ever get AS. Some people definitely have AS but do not have the gene. Only a Rheumatologist should make an AS diagnosis. 10-15% of people with AS have symptomatic IBD such as Crohn's or Ulcertive Colitis. see www.spondylitis.org for more information. Best wishes, 

[Deaminated Marcus]

Welcome to this thread Rickie.

 

I got a copy of the report saying the gene is present and in 2011 it wasn't so that is confusing.

I have many symptoms of AS and my PCP is gathering info before sending me to a rheumatologist.

Were your ESR and CRP high?

 

Thank you for the information.

[kareng]

Genes don't change, so something is going on here. Do you have the actual results from the current one and the previous one in your hand? I'm wondering if they told you incorrectly, did the wrong test or you understood incorrectly. Sometimes, they throw a bunch of stuff at you and its easy to get confused. Sometimes they even call it the wrong thing.

Get all the test results for yourself and some sent to the new doctor. Take your set of copies when you go. Sometimes, one of you might not get all the info. If you have any copies of the bills that might say what was ordered, you could make sure you got all the test results by comparing them.

[Deaminated Marcus]

Thanks for asking Kareng.

 

I have the 3 test results right here at home on paper. 

 

Nov 2011    negative     lab no 1

Dec 2011    negative    lab  no 2

May 2013    present      lab no 1 

 

It's not black and white, they use a numerical range like for Celiac tests.

 

My PCP told me it's the gluten challenge pushed the numbers up.

[kareng]

That doesn't make sense if its a gene test. Your genes don't change except in movies about mutants. They are what you are born with. Maybe this is not for a genetic test?

[IrishHeart]

Genetic testing cannot be altered by gluten or anything else..

 

If you have the HLAB27 gene, then it should have shown whenever you were tested.

[janpell]

I think I get DM is coming from, you are from Canada, right? I don't think there is a huge push for genetic markers with our system but go by blood markers. I get the same thing - wherein I am bordering on AS, lupus and other high inflammatory conditions. They measure by ESR and CRP markers along with physical symptoms and x-rays. I don't have any genetic testing to say where I am healthwise. BTW, my ESR and CRP are well controlled now, by diet and supplements alone.  I tested soy this week and you know, it hit me as strong as gluten, even worse, I think. I would love to have a dr work with me testing my blood work as I trial (and error) my diet. They do test for the Rheumatoid factor though, ?, not sure why they don't for other conditions.

[Deaminated Marcus]

Hi Janpell,       Are you a Canadian too?

 

Thanks for that lead about genetic markers vs a genetic testing. 

That makes sense.

Another thing to study - it never ends LOL.

 

Good for you for controling your ESR and CRP with diet.

 

Your comment about the soy turned a few gears in my head.

I remember taking Whey (milk) protein and getting quite a bad reaction.

So I added it to my food diary conclusions.

But now that you mention it, there was Soy isolate added to the powder.

It was just those 2 ingredients because I know a sugar substitute that is in the other protein drinks

causes me to feel like a bus hit me.

One day I'll retry the canned Soy beans but I suspect the soy isolate is more inflammatory.

 

TTL

[janpell]

It was my sons that tuned me onto soy. Both of them are started to react to foods. I made Edamame beans last week and my older boy woke up from 2-5 am from joint pain, my youngest, after eating said "The beans gave my tummy a headache and sore knees". They seem to be way more in tune than me so I tested a small amount of soya sauce - upper neck pain and inflammation in my feet for two days now. I can do soy lecithin though, whew, chocolate! Yep, just keep journaling and watching.

I am Canadian. I envy the Americans when I read how "easily" they get tested for their ailments.