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Ankylosing Spondylitis


LynneM

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LynneM Apprentice

I'm researching this for a friend who's daughter has been diagnosed with Ankylosing Spondylitis. I'm celiac myself, as was my mom, with horrible consequences, so when I hear of someone with something like this my first thought is gluten. I can't really find much info on research or connections. Ankylosing Spondylitis is a very debilitating form of arthritis, and since rheumatoid arthritis is possibly linked to celiac, I think this could be too. I'd like to collect some data to present to my friend, because, as you know, many people just don't take the gluten thing seriously. Anybody have any experiences, or links to sites I could research?


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mushroom Proficient

Our builder had ankylosing spondylitis and maintained a strict gluten free and vegan diet, and some research I did previously indicated that AS should always be treated with GFD. It was because of him that I decided to try a GFD for my psoriatic arthritis.

Nancym Enthusiast

I was diagnosed with AS but my symptoms disappeared when I started following a paleo diet and taking vitamin d3 supplements.

The forum Open Original Shared Link is good for AS patients. Lots of people have relief when following a low-starch, or no-starch diet.

LynneM Apprentice
I was diagnosed with AS but my symptoms disappeared when I started following a paleo diet and taking vitamin d3 supplements.

The forum Open Original Shared Link is good for AS patients. Lots of people have relief when following a low-starch, or no-starch diet.

Thanks for the info and link. And it's actually Open Original Shared Link (not com). I'll forward all of this to my friend.

Nancym Enthusiast
Thanks for the info and link. And it's actually Open Original Shared Link (not com). I'll forward all of this to my friend.

Whoops! Sorry about that. I hope your friend is able to find something that helps! This disease can be SO painful and debilitating.

hapy4dolphins Contributor

HI, When I started going to a rheumatologist, she thought the same thing for me. Once I began the gluten-free diet and have been on it for about 1 year and a half, many of those pains are decreasing. I also see a chiropractor who has helped a great deal too. Also, has she had her vit. levels checked? Seems like my vits have helped that pain too.

nicole

hapy4dolphins Contributor

HI Again, I should also say, that I began taking Plaquinel for the AS and it made the pain worse. I only took it for about a week 1/2.

NIcole


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LynneM Apprentice
HI, When I started going to a rheumatologist, she thought the same thing for me. Once I began the gluten-free diet and have been on it for about 1 year and a half, many of those pains are decreasing. I also see a chiropractor who has helped a great deal too. Also, has she had her vit. levels checked? Seems like my vits have helped that pain too.

nicole

Hi Nicole,

I assume you mean vitamins? Which are you taking that help your symptoms?

Lynne

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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