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Ankylosing Spondylitis


BRCoats

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BRCoats Enthusiast

Hi Guys and Gals,

Was wondering if anyone has AS and celiac both. I tested positive on the HLAB27 (gene marker) for the AS. I haven't been officially diagnosed yet, but with the positive gene marker and the symptoms I"m having, it's likely. I'm seeing a rheumatologist next week. Anyway, I was wondering if it goes along with celiac, or if any or you have any experience with it.

Thanks for any info,


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Nancym Enthusiast

I have AS and I'm also gluten sensitive. My AS is pretty mild and has gotten much better since getting off of grains and dairy. You might want to check out Open Original Shared Link a lot of folks there have had luck with a no-starch diet, which is essentially what I follow too.

I take sulfasalazine for my AS and it works pretty well in combination with my dietary practices and getting plenty of vitamin D.

I'd suggest trying the no-starch diet and seeing if it helps you out.

georgie Enthusiast
Was wondering if anyone has AS and celiac both. I tested positive on the HLAB27 (gene marker) for the AS. I haven't been officially diagnosed yet, but with the positive gene marker and the symptoms I"m having, it's likely. I'm seeing a rheumatologist next week. Anyway, I was wondering if it goes along with celiac, or if any or you have any experience with it.

Hi, I am curious - I didn't know there was a test for AS. For years I have had a problem with my sacro/lower back and physios and chiros have told me its 'fused' in a perculiar way. One physio described it as almost spina bifida but not ( she had my xrays at the time ).Now I have pain in my rib cage area - also a perculiar restriction. What is this gene test and should I be concerned about my symptoms ? The stiffness is worse in the morning and improves with movement but not over exercise.

Nancym Enthusiast

Some people don't have HLA B27 and still have AS as shown in xrays. Some doctors only diagnose on the basis of the gene test and fusing, others are more liberal about it. That morning stiffness thing and pain in the sciatic area are two hallmarks of the disease. Men usually have the disease worse than women getting more fusing. Women sometimes fuse but often just have lots of fibro pain. For me it was pain in every single joint and many tendons, including the ribs. It can attack the lungs and heart and eyes too. :(

Guest Doll
Hi Guys and Gals,

Was wondering if anyone has AS and celiac both. I tested positive on the HLAB27 (gene marker) for the AS. I haven't been officially diagnosed yet, but with the positive gene marker and the symptoms I"m having, it's likely. I'm seeing a rheumatologist next week. Anyway, I was wondering if it goes along with celiac, or if any or you have any experience with it.

Thanks for any info,

I don't have any personal experience with AS, but it is also considered to be autoimmune in origin, just as Celiac Disease is. Both diseases are due to a "defective" or misguided immune response to an environmental trigger. There is likely shared genetic overlap among all autoimmune diseases, and the defective immune response offen causes more than one autoimmune disease.

This is why people with one autoimmune disease (Celiac, RA, MS, etc.) tend to develop more over time as their body is exposed to more and more potential triggers. Some suggest that special elimination diets may help "calm down" the immune system by decreasing exposure to foreign food proteins, but these foods are probably not the triggers themselves. If they are, they are likely secondary triggers. Likely viruses and/or bacteria are initially involved in the disease process.

I personally collect autoimmune diseases like stamps, so I know what it's like from personal experience! :P

Nancym Enthusiast

I bet before long the connection between celiac disease, and every other autoimmune disease, will be better understood. My rhuematologist believes that it is caused by "leaky gut", and I think the leaky gut is caused by gluten.

Guest Doll
I bet before long the connection between celiac disease, and every other autoimmune disease, will be better understood. My rhuematologist believes that it is caused by "leaky gut", and I think the leaky gut is caused by gluten.

I also agree 100% that Autoimmune disease probably *are* caused by a leaky gut, but gluten is probably not the actual cause. It can make the problem worse, though. The reason why I say this is because people still go on to develop other autoimmune diseases, even if they have been on the gluten-free diet for some time, including since childhood. Also, removing gluten does not cause total remission of any autoimmune disease except Celiac (where it is the known trigger), with the possibility of some isolated (and perhaps unexplained) exceptions.

No one knows if a virus triggers the leaky gut first, or if a leaky gut simply lets more environmental toxins, viruses, etc. in to trigger autoimmune disease.

This is what I think the pathology of autoimmunity is:

-A shift in the good/bad bacteria in the gut causes the "leaky gut". Genetics may also play a role here.

-A virus or other intial trigger that enters the leaky gut sets off the autoimmune reaction. Probably different viruses for different autoimme diseases.

-The body now reacts to dietary proteins like gluten, which contain similiar molecular structures to the virus. In fact, if the gut is now leaky, it is letting in large amounts of foreign protein, which in and of itself will trigger an immune response.

I *personally* think gluten and other dietary proteins play a role and may accelerate autoimmune disease, but are not the actual cause.


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Nancym Enthusiast

They've already shown that gluten increases gut permeability in everyone. There may be be other things that do it also (bacteria, foods, viruses), but I think that's a good start to finding out what common things causes the gut to leak in the first place. I'd be willing to bet research that implicates Western culture's favorite foods doesn't get much attention or funding money.

rinne Apprentice
Hi Guys and Gals,

Was wondering if anyone has AS and celiac both. I tested positive on the HLAB27 (gene marker) for the AS. I haven't been officially diagnosed yet, but with the positive gene marker and the symptoms I"m having, it's likely. I'm seeing a rheumatologist next week. Anyway, I was wondering if it goes along with celiac, or if any or you have any experience with it.

Thanks for any info,

Hi, when I first became ill I suspected that I had AS in addition to Celiac, my mother has AS and I have a sister and brother with Celiac, so it seemed likely.

I kept investigating though and was diagnosed with Lyme disease last October.

:)

BRCoats Enthusiast
Hi, I am curious - I didn't know there was a test for AS. For years I have had a problem with my sacro/lower back and physios and chiros have told me its 'fused' in a perculiar way. One physio described it as almost spina bifida but not ( she had my xrays at the time ).Now I have pain in my rib cage area - also a perculiar restriction. What is this gene test and should I be concerned about my symptoms ? The stiffness is worse in the morning and improves with movement but not over exercise.

I would definitely get tested. The HLA-B27 is just to see if you have the gene. It's not a diagnosis. But with your symptoms and "fusing', I would say it's at least possible that you have AS. Google AS...you will find symptoms, one of which being morning stiffness. I am SO stiff in my neck and shoulders in the morning. It feels like someone stole some of my vertebraes in the night....like I don't have as much spine as when I went to sleep. It gets better with warm water and movement. I also found out that I'm real low on Vitamin D, which is probably the cause. So you might suggest testing that also.

Symptoms of AS do not improve with exercise, unless it's the right type. Such as swimming, which is easy on the joints. I can't hardly play baseball with my son because I'm sore for a week afterwards. Too jarring on the joints.

So yeah...get tested. It can't hurt anything.

BRCoats Enthusiast
I have AS and I'm also gluten sensitive. My AS is pretty mild and has gotten much better since getting off of grains and dairy. You might want to check out Open Original Shared Link a lot of folks there have had luck with a no-starch diet, which is essentially what I follow too.

I take sulfasalazine for my AS and it works pretty well in combination with my dietary practices and getting plenty of vitamin D.

I'd suggest trying the no-starch diet and seeing if it helps you out.

I am already off of all grains. I do eat a little bit of sugar, because I can't tolerate any fruts and veggies (good carbs!) due to my stomach condition (gastroparesis). With the celiac and the gp, I'm really in a bind....which is why I have all the vitamin deficiencies. I'd love to get off the sugar, but when I can't eat any other carb, my energy level goes right in the dumper.

I'm sure getting plenty of Vit. D is essential. I am currently 10 points below what they consider a low normal for Vit. D. so I'm exploring ways to get more (stomach won't handle any supplements either). I bought a Vit. D3 cream but this is my first day using it. So far, I'm doing good with it and it actually has relieved some pain (I put it directly on my spine).

Nancym Enthusiast

It takes awhile but you can adjust to a low carb diet, takes about 2 weeks for most people to make the transition. The body has to switch from metabolizing glucose to using ketones for fuel and it requires switching to making different enzymes. I would advise you look into a Paleo diet, it includes fruit, nuts, veggies and meats and eggs, I feel very good on it and it is naturally starch free.

For Vitamin D ideas you might want to peruse this web site: Open Original Shared Link

There's one doctor on the Internet who says the only sort of D that works for his patients is oil-based Vit D3 (cholecaliferol) that the stuff in multis or calcium pills just doesn't work. He suggests that you take enough of it to get to at least 50 (of whatever the range is), it is at the top of the range and that is about 4000 - 6000 iu of the stuff if you're not in the sun much. He writes quite often about D3 at Open Original Shared Link

BRCoats Enthusiast
It takes awhile but you can adjust to a low carb diet, takes about 2 weeks for most people to make the transition. The body has to switch from metabolizing glucose to using ketones for fuel and it requires switching to making different enzymes. I would advise you look into a Paleo diet, it includes fruit, nuts, veggies and meats and eggs, I feel very good on it and it is naturally starch free.

For Vitamin D ideas you might want to peruse this web site: Open Original Shared Link

There's one doctor on the Internet who says the only sort of D that works for his patients is oil-based Vit D3 (cholecaliferol) that the stuff in multis or calcium pills just doesn't work. He suggests that you take enough of it to get to at least 50 (of whatever the range is), it is at the top of the range and that is about 4000 - 6000 iu of the stuff if you're not in the sun much. He writes quite often about D3 at Open Original Shared Link

Hey, thanks for that link. I'll check it out.

I know what it's like to stop sugar/carbs. Holy cow.....if I do that again, I'll start slowly. Die off of candida can be WAY torturous! :-)

  • 1 month later...
Ellenor Whitty Newbie

I tested positive for HLA-B27 in 2001, when I was having bad, bad vision problems (uveitis) and digestion issues. I was sent to Houston's top rheumatologist, who turned me over to a group of young doctors on his staff. They told me that I was going to have to take medications for the rest of my life because I had the chance of developing a dangerous form of arthritis.

Can you believe that after four years of experimenting with me, my quack rheumatologists never ONCE had me take a food allergy test! No, they wanted to keep me on Big Pharma's Methotrexate and Remicade! I had toxic reactions to both of these meds, nearly died 3 times in the hospital, and decided to try a homeopathic doctor. Best decision I ever made!

Here, I got to take the Lame Advertisement food allergy test , the first food allergy test in my life at age 43. And guess what I tested "red flag" for? Barley, Rye, Wheat, Oats and many other things. I then had that blood test to specifically see if I had an immuno reaction to gliadin and gluten, and I did. So my homeopathic doctor is the one that ACCURATELY found out what was wrong with me in less than 8 weeks.

Since eliminating gluten, my so-called autoimmune problems have disappeared. I also avoid soy, and everything I eat is ORGANIC. I rarely go to restaurants to eat, and I have finally become comfortable living as a celiac. It's amazing how healthy I am today, compared to 5 years ago!

I assure you, this has saved my life. Had I stuck with the Rheumatology guys, I'm certain I would be dead by now. What's wrong with them?

Anyway, if I have accidental gluten exposure today, I immediately know it because my stomach and esophagus will get a "burning" feeling, and I will lose the vision in my left eye and get uveitis. It's not worth it. I won't touch gluten.

This is an interesting group. I am glad to have joined here.

PS - I have Type O Rh-Negative blood. I read on the Internet that a lot of people in the U.K. are both Rh-Negs and celiacs. Is anyone else here also Rh-Neg?

Ellenor Whitty Newbie

Geez, this forum will not let me post/write the actual name of the food allergy test I had. This was NOT me doing a promotional plug!

The Lame Advertisement Food Allergy Test....... hmmm.

Try this again: Lame AdvertisementTest

  • 2 years later...
melbourne Newbie

Have been suffering severe inflammation with AS for 12 years now. Great pain in my lower back, ribs, and neck. I started the no starch diet a week ago and i'm good enough to go for a run. I don't know why practitioners do not prescribe this diet? It's only the start, and i hope to help others suffering this condition (or similar auto immune conditions) without the need for them to opt for drastic alternatives like immune suppresants.

mushroom Proficient

The builder of our house had AS and he would not go near gluten; he was directly responsible for me going gluten free to see if it helped my RA (it didn't :( )

  • 6 months later...
moodle Newbie

Hi all,

I'm new to this forum but have found this discussion fascinating. I'm in the UK so I hope you don't mind me gatecrashing your site :rolleyes:

A bit about my own history: I was diagnosed with coeliac disease aged 15 months in 1970 - As a baby I was quite sickly but as I grew older things settled down. I follow a strict gluten free diet.

About six months ago I developed Uveitis suddenly in my right eye and discovered I am HLA B27 positive. I noticed somebody had asked whether anybody else has coeliac disease and blood group O Rh Negative, I am (but am unsure of any connection)

Other things that have happened of late, coinciding with onset of the uveitis are, severe joint pain, particularly lower spine, knees and right ankle and new bowel problems, namely mucous and blood (which has thankfully settled down now).

The first instance of uveitis lasted three months and was treated with dilating drops and prednisolone corticosteroid drops every few hours. A month ago the uveitis returned in my left eye, but has settled down much faster. I have now been referred to a rheumatologist, who I see in March as they suspect anklosing sponylitis?

I wanted to ask whether anybody else had a similar experience to the above and if so what helped them. Also I wondered where I might find further information regarding a low starch diet?

Many thanks in advance for your help

Moodle

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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