This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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.
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.
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.
Basically, I have found out that Nexium makes me sick. Whether it's a cross contamination issue or simply side effects, I'm not going to be able to keep taking it. So I have stopped talking the Aleve because the GI said I can't take it without taking something to prevent the stomach ulcers it's known to cause.
Basically, my knees and thumbs are still swollen. My back and neck don't bother me so much, at least not lately. All my tests have come back negative, including for possible infections, for elevated celiac antibodies and for all rheumatoid tests, etc.
So yeah, I still don't have a good reason for this. I'm thinking about getting a second opinion. Peripheral arthritis just sounds silly to me. I don't see how if it's celiac related arthritis it would get worse three years AFTER I started my gluten free diet. The timing is completely random. At the same time, I agree that Seronegative arthritis doesn't fit either, as I'm not really in pain, just inconvenienced in varying degrees from day to day. Everything I've read seems to indicate people who have RA have a really horrible time getting around and are in alot of pain.
I am still endeavoring to not eat any Nightshade family plants, but it doesn't seem to have any effect on my knees. I'm fairly certain that isn't the issue, but I'm going to keep it up for a while longer just in case.
I'm taking Omega 3 now, I heard it is good for joints. I'm also excercising (DDR ) and trying to find a place to take Tai Chi since I heard that is good for arthritis. I figure at the very least I can try to attack from all sides and see if something works.
Actually, I only started changing medications after the problem started. The start of this appeared to be completely random, at the time I hadn't changed anything, and no changes I make seem to help.
As for Naturemade, they say no gluten on the bottle, so I'm sure it's not that. They are cheaper than the Pioneer and only require to take 1 pill, so that's why I switched. I don't think Pioneer was causing the problem.
I broke down and took the Nexium & Aleve, but I think I might be slightly allergic to one of them. I felt like I had a lump in my throat the whole day.
Incidentally, Nexium has apparently also changed their stance, I read they used to specifically test for Gluten, now they just say 'no gluten ingredients', same as Aleve.
I can't take Ibuprofen because I react really badly to it (I swell up everywhere!) and I'm not sure if I should try Asprin since I heard if you can't take Ibuprofen you probably shouldn't take Asprin.
Also, on a side note, I never miss a multi-vitamin because if I don't take it, I get all weird and shakey. I've been that way for a while now, actually went to the GP about it and he never found anything. If I take a multi-vitamin, it doesn't happen, so I guess I must have some vitamin deficiencies.
Something I feel important to point out is that alot of different Arthritis stuff seems to point to pain in the joints. I wouldn't classify me as have pain, more like a mild aching that gets worse or better or just goes away some days.
The fluid in the joins is far more worrisome to me, at first it was alternating, swelling going up and down in September and October with no seeming correlation. Now if they are changing I seem to barely notice it. They seem stuck the same way for a while now.
The fluid in them and the back aches and neck aches are what bother me the most. When my husband rubs my back and shoulders and neck they feel better for short periods of time.
I also have a new bed and a special pillow, they don't seem to be helping.
Well I've been back to the doctor and the GI. Basically, they are now both saying they think this isn't triggered by gluten, but the GI is making me come back repeatedly to keep my antibody levels monitored.
The Rheumatologist feels it is 'peripheral arthritis'. He said right now he doesn't believe it fits the pattern of Seronegative R.A. Arthritis or Lupus, however he wants me to keep checking back. He said if I start having more problems with my hands he would lean more toward Seronegative R.A.
To recap the main symptoms are swollen fluid-filled joints, in my knees, my left thumb (occasionally the right), and my right ankle. In addition I also get a feeling like I've pulled all the muscles in my back and it can make it hard to move around, but that comes and goes.
In an odd related note, the Rheumie had put me back on Methlyprednisone, but this time I did react to it! I got all bloated and sick and had to stop taking it. I guess maybe it was a bad batch?
At any rate, I haven't taken anything since sunday, my back is really bothering me.
The Rheumatologist wants me to take an NSAID, like Aleve or Asprin, but I can't seem to find one that is guaranteed. Aleve told me they don't add any gluten, but I'm not sure I want to risk taking it if they won't guarantee it.
On top of that the GI told me if I'm gonna take Aleve I have to take Nexium to stop stomach ulcers.
So I'm hobbling around for now, I'm not sure what to do. They've done a million tests and come up with everything negative.
I just don't get why this would suddenly spring up at the end of September. I have been doing fine on my diet for 3 years, why all of a sudden a random symptom?
On a side note, the not eating Nightshades doesn't seem to have helped really. Also, I don't have any dry/scaly patches of skin, both doctors asked me about that.
This is so frustrating. I'm only 23 years old, why the heck do I have arthritis?
Thanks guys, I have been checking over all of my medication because of the weird knee/thumb swelling issue (I have posted about in another thread).
I'm going to make an appointment with my GI, he seems concerned I might be getting gluten, although I don't think so. I already badgered my GP into retesting my Thyroid & my Celiac and both came back fine (when I was originally diagnosed with celiac I had a positive blood test with very high lvls of anti bodies).
I basically discovered all this while trying to find any possible source of gluten in my diet (I have been gluten-free since 2007, and generally when I get glutened it's pretty obvious to me).
I am trying to cut the nightshade plants out of my diet for a week to see if they get any better. My knees have gone down in swelling since the weekend, although all day today my neck and back were aching.
My Rheumatologist wants me to take the methlapredisone again, so I guess I will do that for now. I called my GI, he said celiac related arthritis only happens when consuming gluten, so he wants me to come in for a check up.
I'm pretty sure he wants to do the anti-body test again, but thing is, I already asked my GP for one way back in September when it first started. Negative. And when I was diagnosed in 07 it was so high my doctor apologized to me for not realizing what it was.
I also made him recheck my thyroid, he said the lvls were normal. Also, I do take a multi-vitamin, and at my doctor's suggestion (GP) was taking an extra vitamin d, which did absolutely nothing.
Both of these doctors seem to instantly think gluten. I checked my medications (all of which I have been taking since January, and I had a scope in March so I assume they are probably safe) and found that Nasonex & Zyrtec are no longer okay as they won't say anything other than they don't know, whereas the last time I called they said no gluten ingredients but won't guarantee.
So I am not going to take them anymore, I will probably alternate between claritin and claritin d (for some reason regular strength does not always work, which is why I was taking both Zyrtec & Nasonex at the same time).
In addition I found that my TriNessa has corn starch, but they won't guarantee it's gluten free (Watson). Although I have been taking it for so long, I feel like it would have reaped bloody vengence on my guts by now, and I feel fine appart from the knees and the aches.
But what frustrates me the most is I KNOW how I react to gluten. I had a really nasty reaction in August on my honeymoon - we had just arrived at Epcot center and BAM! Cramps, full on run to the bathroom - I was terribly sick all day.
I just feel like there is no way this can be gluten. I am so crazy about my diet! The only questionable food I eat is when I eat out, only at two places - Chipoltle & Outback steakhouse.
And I eat at them very rarely, certainly not long enough to cause a two month marathon of swollen knees and thumbs!
I'm also very strict, I make them change their gloves and remind them over and over. And both places have said that the items on their gluten free list are fine so long as they are not cross contaminated (which would result in me running to the nearest bathroom at break neck speed!) In addition, I've decided to stop going to Chipoltle on the off chance that it is something to do with them, but I doubt that even more than I doubt it being caused by my medications.
The only way I could be getting glutened is if something labeled gluten free is not gluten free. And I don't know that I can deal with that lvl of paranoia.
Anyway, I'm going to keep trying to avoid nightshade plants, and I guess I will take the methylprednisone he asked me to until I can see my GI and prove to him I am not eating gluten.
I was prescribed prednisone for my swollen knees, but have been unable to take my medication. This is because the two companies I have called do not verify the product to be gluten free, or know the ingredients.
The first company was Watson, they simply stated that they believed the main issues were with starch, and their starch was corn but they didn't know anything else.
Frustrated, I turned to the internet. I found two websites proclaiming Roxane Laboratory's Prednisone gluten-free. I called them and got a dead end message stating that they do not talk about their ingredients.
So I emailed them. This was their response:
Roxane Laboratories Incorporated (RLI) does not provide information about the
composition of the ingredients used to manufacture our products.
Additionally, RLI does not provide details of the quantity or content of each
ingredient used to make our products. RLI products are approved by the FDA
and the approved ingredient information is available within the package
insert supplied with all products distributed and sold. Package inserts are
also available at www.roxane.com. We apologize for any inconvenience caused,
and we suggest that you consult with the prescribing physician to determine a
recommended course of action based upon this information.
Technical Product Information
Boehringer Ingelheim Roxane, Inc.
Tel: (800) 962-8364
Fax: (614) 308-3540
Wow gee, thanks so much guys. Not only did you not answer my question, you carbon copied the response from your phone message, so I am quite certain you didn't even read my question.
So please, do NOT believe everything you read on the gluten-free drug websites out there. If you don't check yourself, you won't know. I have spent all of my breaks today calling people to find out about my medications. While we're on the subject I would like to also share that:
As of today, Zyrtec has apparently changed their stance and are now saying they don't know what might be in their ingredients and aren't making any claims.
Nasonex has said pretty much the exact same thing.
So thanks guys, I've only been taking them for a year based on a phone call I made in January to you.
In addition, TriNessa has given me the same run around as the first Prednisone company(same company, Watson). I'm going with it's probably safe since I've been taking it for years, but I'm thinking about switching to Ortho Tri Cyclen (the brand name).
Ortho Tri Cyclen was willing to state that their ingredients do not contain gluten, but that they do not test and so will not confirm it as gluten free.
So basically I am stuck right now with swollen knees and thumbs and aching all over unable to take the medication prescribed to me.
The company Lannett told me that my Levothyroxine is gluten-free, so I may call them back and ask if they offer any of these missing medicines.
Claritin doesn't work great for me, but since both the allergy medicines I was using seem to have retreated into the no zone I'm going to have to make do.
At this point, I'm so tired, frustrated and upset, I might just give up and hope the whole random swelling knee thing goes away, since my doctor seems unable to prescribe anything safe for me to take.