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Arthritis And Celiac Disease

arthritis celiac disease

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#1 Beloved

 
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Posted 27 August 2013 - 06:07 PM

I haven't been back to this forum in years, I've just been managing celiac disease as best I can. It doesn't bother me so much anymore than the Hashimoto's does, I've just gotten used to it.

 

However, in September 2009 I developed arthritis which persists to this day. I'm only 27 years old but this makes me so depressed sometimes I just dissolve into tears.

 

I've been to three rheumatologists and I've been tested for all manner of conditions that could cause the chronic pain in all my joints and in particular the horrendous fluid filled swelling in my knees (and occasionally my wrists and thumbs). As I write this my knee looks more like a disgusting grapefruit than a knee.

 

You name it, I've been tested for it, and I've come up negative. I was sure it must be rheumatoid arthritis but I've come up negative three times now, and I've had xrays to see if there was damage to the joints. For four years I've tried to manage this just with aleve but honestly it doesn't really work.

 

The only response I ever get from rheumatologists is "maybe it's related to your celiac disease". That's seriously it. The first time I heard it I called the guy a moron and got a new rheumatologist. Then the second one told me the same thing, so I switched again. Then the third repeated it. I don't understand how the heck this could be related to a condition I have well under control, I am obsessive about gluten free and I make sure that everything I eat is gluten-free, and believe me, I know when I've made a mistake because the consequences are horrible.

 

I guess the reason I'm posting this is my recent experiences. My rheumatologist convinced me to try Sulfasalazine, however it turned out that DESPITE telling CVS the medication needed to be gluten-free they didn't check, and the result was me missing time from work and becoming violently ill for two weeks while I tried to figure out what I was eating that was provoking the celiac. When I finally found out that the pharmacist had mistaken "wheat free" to mean "gluten free", I asked my rheumatologist for a manfacturer that makes gluten-free medication but she just shrugged.

 

The only company I know of that actively pursues gluten-free is Lannett and they don't make sulfasalazine, so I'm really depressed about that.

 

Then last week, I thought I had a breakthrough. I thought that because my knee blew up after eating pretty much a massive amount of tater tots, I thought it must be potatoes. I removed them from my diet and for an ENTIRE WEEK I was symptom free and on cloud nine, I thought I'd finally done it.

 

Then yesterday despite still eating no potatoes my knee blew up again. I can't overstate how crushed I am. I'd already previously tried completely elliminating dairy and that didn't work either. I've tried everything I can think of and I am just so depressed about this. What makes it worse is that I just KEEP TESTING NEGATIVE FOR EVERYTHING! Why can't 3 different doctors figure it out?

 

It upsets me so much that they just say "maybe it's the celiac" but have no real explanation or reason why. Basically it's a cop out because they don't know.

 

Has anyone else here experienced this? Does anyone know a company that will guarantee sulfasalazine as gluten-free? I just need some help. I am so tired of doctor fail I could scream.


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- Hashimoto's Autoimmune Thyroid Disease
- Celiac Disease per positive test Nov '07

- "Mystery" arthritis since 2009


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#2 frieze

 
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Posted 28 August 2013 - 12:29 AM

I haven't been back to this forum in years, I've just been managing celiac disease as best I can. It doesn't bother me so much anymore than the Hashimoto's does, I've just gotten used to it.

 

However, in September 2009 I developed arthritis which persists to this day. I'm only 27 years old but this makes me so depressed sometimes I just dissolve into tears.

 

I've been to three rheumatologists and I've been tested for all manner of conditions that could cause the chronic pain in all my joints and in particular the horrendous fluid filled swelling in my knees (and occasionally my wrists and thumbs). As I write this my knee looks more like a disgusting grapefruit than a knee.

 

You name it, I've been tested for it, and I've come up negative. I was sure it must be rheumatoid arthritis but I've come up negative three times now, and I've had xrays to see if there was damage to the joints. For four years I've tried to manage this just with aleve but honestly it doesn't really work.

 

The only response I ever get from rheumatologists is "maybe it's related to your celiac disease". That's seriously it. The first time I heard it I called the guy a moron and got a new rheumatologist. Then the second one told me the same thing, so I switched again. Then the third repeated it. I don't understand how the heck this could be related to a condition I have well under control, I am obsessive about gluten free and I make sure that everything I eat is gluten-free, and believe me, I know when I've made a mistake because the consequences are horrible.

 

I guess the reason I'm posting this is my recent experiences. My rheumatologist convinced me to try Sulfasalazine, however it turned out that DESPITE telling CVS the medication needed to be gluten-free they didn't check, and the result was me missing time from work and becoming violently ill for two weeks while I tried to figure out what I was eating that was provoking the celiac. When I finally found out that the pharmacist had mistaken "wheat free" to mean "gluten free", I asked my rheumatologist for a manfacturer that makes gluten-free medication but she just shrugged.

 

The only company I know of that actively pursues gluten-free is Lannett and they don't make sulfasalazine, so I'm really depressed about that.

 

Then last week, I thought I had a breakthrough. I thought that because my knee blew up after eating pretty much a massive amount of tater tots, I thought it must be potatoes. I removed them from my diet and for an ENTIRE WEEK I was symptom free and on cloud nine, I thought I'd finally done it.

 

Then yesterday despite still eating no potatoes my knee blew up again. I can't overstate how crushed I am. I'd already previously tried completely elliminating dairy and that didn't work either. I've tried everything I can think of and I am just so depressed about this. What makes it worse is that I just KEEP TESTING NEGATIVE FOR EVERYTHING! Why can't 3 different doctors figure it out?

 

It upsets me so much that they just say "maybe it's the celiac" but have no real explanation or reason why. Basically it's a cop out because they don't know.

 

Has anyone else here experienced this? Does anyone know a company that will guarantee sulfasalazine as gluten-free? I just need some help. I am so tired of doctor fail I could scream.

eliminate ALL nightshades!  potatoes (white) tomatoes, eggplant, peppers.  good luck


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#3 ravenwoodglass

 
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Posted 28 August 2013 - 02:18 AM

May not be the case for you but for me soy will flare my arthritis badly. Maybe eliminate both nightshades and soy for a bit and then challenge them seperately.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 Beloved

 
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Posted 28 August 2013 - 06:23 AM

Thanks guys, I will try these. I'm really at the end of my rope with doctors, I'm thinking about switching to a new one again because they all are just so useless. It's like they don't care or don't take it seriously even though they can plainly see there is something seriously wrong with my knees.


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- Hashimoto's Autoimmune Thyroid Disease
- Celiac Disease per positive test Nov '07

- "Mystery" arthritis since 2009


#5 nvsmom

 
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Posted 28 August 2013 - 07:08 AM

Perhaps you could try testing for food sensitivities? Some of the "alternative" doctors will test for that and it could turn up some helpful results (since the doctors aren't helping).

 

How are your thyroid levels? Arthraglias can be a symptom of hashi's, could you be under treated? Most people with hashi's tend to feel their best when TSH is near a 1, and free T4 and freeT3 are in the 50-75% range of their lab's normal reference range.  It's not true for everyone, but it could be something to check as well..

 

Good luck. I hope you lose the grapefruits soon.  :(


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#6 Beloved

 
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Posted 28 August 2013 - 10:25 AM

Perhaps you could try testing for food sensitivities? Some of the "alternative" doctors will test for that and it could turn up some helpful results (since the doctors aren't helping).

 

How are your thyroid levels? Arthraglias can be a symptom of hashi's, could you be under treated? Most people with hashi's tend to feel their best when TSH is near a 1, and free T4 and freeT3 are in the 50-75% range of their lab's normal reference range.  It's not true for everyone, but it could be something to check as well..

 

Good luck. I hope you lose the grapefruits soon.  :(

 

Hi thanks! I just called an allergist office to ask them if they do that (they weren't there so I left a message), I haven't tried that yet. Maybe they will find something else I can remove from my diet to try.

 

My thyroid dr normally says I'm around 2, I have an appointment coming up in the next month or so so I will ask him, but he always gave me the impression it was fine and under control, but definitely worth asking.

 

Thank you so much for your suggestion and well wishes, maybe I'll get lucky and they will find something that causes it.


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- Hashimoto's Autoimmune Thyroid Disease
- Celiac Disease per positive test Nov '07

- "Mystery" arthritis since 2009


#7 janpell

 
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Posted 28 August 2013 - 10:36 AM

I would definitely do an elimination diet and document everything! Yes, nightshades are crazy. I have arthritis too (psoriatic) and was on sulfasalazine but started to react to it and that is when I went the natural route. It helps better than any medication. Nightshades are a funny thing for me. I can have baked russet potatoes and Lay's Original chips but that is all for potatoes. I can have heavily processed tomatoes (sauce and salsa) but not fresh or minimally processed. Even though I don't seem to react to the ones I listed I still use them sparingly. The rest (nightshades) leaves me with a right knee the size of a grapefruit. Plus I react to many, many other foods. It has taken me two years of writing down everything and always watching.


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#8 Beloved

 
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Posted 28 August 2013 - 05:27 PM

I would definitely do an elimination diet and document everything! Yes, nightshades are crazy. I have arthritis too (psoriatic) and was on sulfasalazine but started to react to it and that is when I went the natural route. It helps better than any medication. Nightshades are a funny thing for me. I can have baked russet potatoes and Lay's Original chips but that is all for potatoes. I can have heavily processed tomatoes (sauce and salsa) but not fresh or minimally processed. Even though I don't seem to react to the ones I listed I still use them sparingly. The rest (nightshades) leaves me with a right knee the size of a grapefruit. Plus I react to many, many other foods. It has taken me two years of writing down everything and always watching.

 

Thank you Janpell!! I will definitely do that, I'll start a food diary tomorrow.


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- Hashimoto's Autoimmune Thyroid Disease
- Celiac Disease per positive test Nov '07

- "Mystery" arthritis since 2009


#9 T.H.

 
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Posted 28 August 2013 - 07:36 PM

One thing that might be worth checking out is sulfite sensitivity.

 

It can cause joint swelling and pain as a symptom (see this blogger's post about what happened to her when she last ate it:

http://winenot69.com...e-to-be-lonely/ )

 

Potato products are sulfited to keep them from browning (although you may not always see it on the label) and so avoiding potatoes would take care of some of that. But there are lots of other foods that are high in sulfites, too. Some folks can tolerate some sulfites and only react when they go over a certain amount, while others can have almost none. This gal has a good site about her own experience with sulfites, but it's her list of foods to avoid that is the most helpful: http://holdthesulfites.com  .  She errs on the side of caution, but it can be a good starting place.

 

In the people I have met who are sulfite sensitive, there's been a higher percentage of folks with celiac disease or gluten intolerance than the general population. That's just anecdotal, but it's been interesting to note. 

 

It is, frankly, WEIRD in trying to get diagnosed, because doctors still don't know exactly WHY people react to sulfites. There are theories, but nothing has been proven yet, and as a result, testing is not very good. Some people get elevated IgE, some people don't, so testing for that isn't all that helpful. Some people have asthma issues with it, while others don't. And prick tests and other allergy tests are around 50/50 in terms of accuracy. The only real way to test it, that I've heard of, is to do a sulfite challenge at an allergist, but because sulfites are not proteins, some allergists won't even test for it. :-/

 

And most doctors don't seem to know much about it, either.

 

 

I have sulfite sensitivity myself (no asthma issues or anything) and it caused a lot of joint pain for me. The joint pain has improved significantly. it comes back if I get glutened OR sulfited, but sulfites definitely had an affect. 


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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive






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