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Fluid Filled & Swollen Knees, Thumbs, Ankle
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I am sincerely hoping someone can help me with this problem. I am 23 years old, female, caucasian, and have several health conditions. I take the following medications: Levothyroxine (for thyroid), Tri-Nessa, Nasonex, Zyrtec, multi vitamin - took 1 a day instead of the 6 recommended (used to be pioneer gluten-free, I have in the last two weeks switched to Naturemade), Metamucil Orange Powder (every other day, 1 spoon full).

Okay, I was diagnosed with Celiac Disease back in 2007. I have since been on a gluten-free diet. I had a scope this year that showed all damage was repaired by my diet, so I have just kept at it. In addition, I also have Hashimoto's Thyroid and mild constant allergies.

Towards the end of September this year, my knee swelled up. I ignored it. My thumb swelled up. I ignored it. My other knee, both thumbs and my ankle swelled up. I called out of work and went to the doctor in a panic. I also had random neck, back, shoulder, knee aches.

My doctor tested me for my thyroid (in case it was off), Rheumatoid Arthritis, and at my suggestion, the Celiac test for antibodies. All came back negative, so he advised me to take Vitamin D and see how it went.

My knees varied in swollenness from ridiculously hard to get up & down stairs to barely noticable. The vitamin D did not seem to help at all (was taking a second vitamin in addition to the multi).

I called him back, he told me to just keep taking it. I called a Rheumatologist towards the end of October, fed up and wanting answers.

The Rheumatologist used a needle to pull a ton of fluid out of one of my knees and sent it to be tested. He also resent me to the lab to get bloodwork done again (he redid the RA test c reactive protein) and some others.

The Rheumatologist told me he believes this is linked to Celiac and we will just have to treat the symptoms. All of the tests he did came back negative.

He put me on "methlyprednisolone" for 6 days. During that time, I felt wonderful and my knees shrank back to normal. However the dosage was constantly decreasing and they started to swell again, slightly.

(A side note about this medication, in case it is important. The company said that the pill had corn starch that could be cross contaiminated with up to .01% of gluten. I called my GI's office and his medical assistant told me it would be okay to take on the short term, so I did. I didn't have any problems.)

Two days after finishing the medicine they ballooned back up to their most swollen yet, both knees full of fluid, as well as both thumbs. I called the doctor back. He said he would have to call in a long term perscription of "prednisone". I went to the store to pick it up, but they do not know if it is gluten-free or not, so I haven't taken any.

I have to wait for Monday to call the company and find out if this medication is okay. In the meantime, I took a benadryll to see if it would do anything (hoping that maybe this was some kind of allergy). It did nothing except put me to sleep.

Is there anyone who knows ANYTHING that this could be? Or, anyone who knows for a fact that this is just something some celiacs suffer through? I would have thought if it was Celiac related I would have had to ingest gluten for it to occur, but per my Diet and my redoing the anti-body test, I don't believe that's the case.

Currently I am having a terrible time getting up stairs and I feel as if I am walking around with balloons for knees. I hate the thought of having to take ANOTHER long term medication.

And here is the strangest part of this whole deal:

Back in high school, I remember my knees swelling up like this, and eventually going away. In addition my thumbs have randomly swelled up over the years, but it has always gone away.

My question is, why now? Why so severely? I don't play sports, I have a desk job. I don't really exercise, I weigh about 160lbs. I'm not in terrible shape.

This has been dragging on for so long I keep flashing back to 2007 when I spent the entire year looking for answers and everyone telling me nothing, eventually finding my problem - celiac disease.

I have a hard time believing this isn't an independent issue. I really thought it was R.A. at first, but with two negative tests and the fact that I am not in constant pain, just constant discomfort, leads me to believe now that that is not the case.

Please, if anyone has had this condition and knows anything more about it, I would greatly appreciate a response.

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If you are responding to Prednisone and the swelling is symmetrical(same on both sides), you may be a sero-negative RA. My mother has those symptoms and she has sero-negative RA and possibly lupus. I would consult the Rhuematologist about the possibility of this. Also, on the note of Prednisone, I have been on it for over a month without and Celiac symptoms arising. My treatment is for Autoimmune Hepatitis. I am in the hospital right now with joint swelling in both knees and ankles along with my first two fingers are swollen and sore with redness on the joint. I also have myoglobin in my urine though. They aren't really sure what's going on with me yet but they are thinking RA, lupus, or nuero-muscular disease.

Definitly call the Rhuemie on monday and suggest the possibility of you being sero negative. He might agree since you responded to the prednisone.

Hope to help a bit. And i hope you get to feeling better.

Brooklyn

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Could possibly be all the above, but a question I have is. Do you eat a lot of potatoes, tomatoes and/or eggplant? You might be having a problem with nightshade vegetables. Remove all of those for a few days and see what happens. Just a thought. Hope you get to feeling better.

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Thanks for responding guys.

I haven't actually taken the "prednisone" yet, because the pharmacy couldn't confirm for me that it was gluten free...even though I specifically asked the Rheumatologist to tell them to check it when he gave them the prescription. :(

The one that was working was "methylprednisolone". I think they must be different but related.

I have another appointment in 2 weeks, so I will ask him about Sero-Negative Arthritis and Lupus then. He wanted me to try the prednisone stuff first. Of course if I can't take it I'll call him back sooner...pharmaceutical websites really need to list ingredients in real terms, not their own made up medical speak.

Like I said, R.A. was what I instantly thought, but I have had two negative tests, and the swelling wasn't consistant (it would get worse or better, and I don't get morning stiffness or real bad pain, just dull aches).

As for the nightshade plants, I don't really eat them at all straight up. However I do use a ton of ketchup on everything I eat, so I guess I will cut that out for a week or two and see if it helps any.

Thanks guys! I will post any updates if I get any. If you think of anything else, please let me know.

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I also have Hashi's and have the tendency to have sudden swelling of ankles and fingers.

When this happens I take a small vitamin cocktail. Smart water for the magnesium, potasium, and fluids in general. A sublingual vitamin B12 tablet. These vitamins will flush out of your system if you do not need them. This cocktail also helps with headaches.

With Celiac you are at risk of vitamin deficencies and other food intloerances. Keep a food journal to see if there are any connections to your diet. (Artificial sweeteners, night shades, a new non-ingestable product in your life?)

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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. :(

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I have psoriatic arthritis, which doesn't show up on any antibody tests. My psoriasis is very minimal, and if it weren't for the joint pain I would ignore it entirely. Do you have any scaly patches? Knees, elbow? Anywhere you pants rub?

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Hey Beloved!

I don't know if anyone has mentioned it, and I know all of these autoimmune things mimic each other just to make it harder to diagnose!, but could it be Lupus? I know FM and Lupus tend to piggy back each other. I don't know if this helps but I have random, and I mean random, swelling in my legs and ankles from Lupus and Lupus related kidney abnormalities. I'll pray that you find the answer soon!

~Anna

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My MIL has something like this going on in her knee, and her doc says it's pseudo-gout. (I don't know if that helps, but I thought it was worth mentioning.) Good luck figuring it out!

Jeanne

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Don't forget when you are avoiding nightshades that peppers are also. That means watch out for paprika. It's in a lot of spice mixes and salad dressings.

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Hello all.

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?

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Have you changed anything in your diet or vitamins/meds? I think the answer is yes from your posts. I made the mistake of getting a new multivitamin that was wheat, dairy, soy, yeast free from Vitamin Shoppee. I didn't read the ingredients close enough and after a while started getting various symptoms. I finally realized the ingredients included oat grass. I eliminated that multivitamin and started feeling better. I used to have bad swelling in my feet and ankles mostly but that cleared up for me when I went gluten-free and stuck to a whole foods diet for a good while. I also started taking thyroid supplements and eliminated coffee, tea and carrots. I was already off dairy for 10 years. No eating out at restaraunts except on rare occasions for me. It is possible to develop new food intolerances over time beyond gluten, so an elimination diet might be a good idea. Just some thots, I hope some of it is helpful. The one thing that stuck out to me is the change in vitamins you described, from Pioneer brand to ? I do think it makes sense to try eliminating vitamins or meds, even if they are supposedly gluten-free, because there could be gluten cross contamination or other things in them that you react too. You just never know until you try.

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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.

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Hi all, only a small update.

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 :P) 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.

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I understand that nightshades are more related to small joint problems so avoiding them would probably help your fingers but not your knees.

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I understand that nightshades are more related to small joint problems so avoiding them would probably help your fingers but not your knees.

Well that sucks. But so far it doesn't seem to help them either, right now both of my thumb joints are huge and I cannot really bend them at all, they are so filled with fluid.

Good thing I don't need them to type, just to hit the space bar!

Honestly I sometimes worry that one day they will not stop filling with fluid and will just explode. Probably a childish fear but it's really crazy how large the joints can get some days.

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Hi there,

I found this thread through searching for rheumatoid arthritis, and was very interested to read it. How are you doing now, a few months later? I hope you've managed to solve this mystery and are feeling back to normal again!

In partial response to your question of why now, and why at your age, I experienced a similar thing a few months ago, though on a smaller scale. I've been strictly gluten-free for a year and a half now, and back in early February all of a sudden my finger joints started swelling up and were quite painful. I had just moved with my husband to France to live with his family on their farm for several months, and so health care/seeing doctors/getting tests was a tricky thing, being technically a visitor. The swelling/pain kept up for about a month and then started getting better. I had a lot of communication with my family's naturopath back in Oregon, where I'm from, and he said it sounded like rheumatoid arthritis symptoms, but I still haven't been able to get tested.

To make a long story short, I'm much better these, but still don't know what exactly the problem was, what caused it, and why it's better now. One possibility is gluten contamination, since all of a sudden I wasn't making all of my meals anymore, and though my in-laws were good at being careful about how they prepared the food and stuff, I'm pretty sure I got the accidental gluten here and there. Another possible factor is the cold, since their house isn't heated and I was doing a lot of outside work. This is supposedly a big factor in RA symptoms. And now it's warmer, and no more symptoms. There's also the stress factor of moving to another country and living with my in-laws. Big stresser there.

But, like you, I wondered why now? a lot. I was 28 at the time, and like I said, had been strictly off gluten since my diagnosis a year and a half before. Researching RA on the internet can be a scary thing, especially for young people. When I get back to the States this fall, I'm going to have some tests done, because it'll be good to know, even if I don't have symptoms anymore. But at least I have an idea that it was linked to gluten contamination, and that if I'm extra careful I can control these symptoms. Something that seems weird, though, is that I don't normally have violent and automatic reactions to gluten. If I get some contamination, I usually only notice the next day, or even two days later, and my symptoms are more often mental/emotional, with only mild g-i problems. So why would I all of a sudden be getting these serious joint symptoms, from what was probably only a tiny bit of contamination?

So I still have a lot of unanswered questions, which is why I was interested in your story. I'd love to hear an update, and again, I hope you're doing better!

R

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Hello Beloved, my 21 year old daughter is suffering with symptoms very much as you describe. The numerous tests show nothing wrong. Her pain and swelling have left her virtually disabled. Have you found any answers or have any information at all, please let me know. We are quite desperate and she has become quite seriously depressed.

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Welcome to the board, MagentaDarkAngel.

 

This thread is a few years old so Beloved may not see your reply.  You may need to start another thread to get some responses.  

 

Best wishes.  :)

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MagentaDarkAngel,  Beloved if you are out there, and other interested parties:

 

I had swelling included behind the knees and actually including nearly everything from head to do.  That resolved when I removed all foods that I was allergic to and replaced it with new foods.  My meats include bison, elk, duck, yak, and lamb.  My vegetables include spinach, swiss chard,turnips, jicama tot soi bok choy, turnips, and kale.  If you haven't yet tried it I also would encourage you to try fennel.

 

I am very natural minded and would encourage you that you would find help to use medicines that are not as apt to cause damage as prednisone is.  I would seek to find out what your allergies are and avoid them.  I would try to get your allergies to go away.

 

Best wishes for your healing,

 

Dee

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I have Psoriatic Arthritis and had the worst inflammation. DMARDS and Celebrex didn't work for me and I didn't want to try biologics so this is when I started diet change. I completely stay away from gluten as it makes my hair fall out and it took forever to figure out the foods that bother my system. Tomatoes cause my knee to get very swollen and sore within two days and for some reason I still keep testing hoping one day.... I find I get neck pain or scapula pain when I eat certain foods too - soybeans, balsamic vinegar; skin conditions from peanuts, dairy, legumes. A journal is a great way to keep track of symptoms and foods. I find when I go on a nightshade binge it takes weeks for the swelling to subside. I officially banned tomatoes and potatoes from my diet just last week - no more testing. I am also giving up dairy for a full three months as I have been cheating too often with it.

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
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    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
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