Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Arthritis And Celiac Disease

Beloved

By Beloved
in Related Issues & Disorders

Recommended Posts

Beloved Apprentice
Beloved
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

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

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Beloved Apprentice
Beloved
Posted
  • Author

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.

nvsmom Community Regular
nvsmom
Posted

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.  :(

Beloved Apprentice
Beloved
Posted
  • Author

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.

janpell Apprentice
janpell
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Beloved Apprentice
Beloved
Posted
  • Author

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.

T.H. Community Regular
T.H.
Posted

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:

Open Original Shared Link )

 

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: Open Original Shared Link  .  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. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.