Psoriatic Arthritis Anyone?

[rock on]

hi,

i am new to this forum. i am here because of my husband. i believe he has celiac...we are waiting for his blood test results. i just wanted to ask if any of you (or anyone close to you) have psoriatic arthritis & have had good results from going gluten-free. we just started the diet (not even 1 week yet) and i am anxious for him to start feeling better. i know it takes a long time. he has been suffering since the beginning of the year & is on methotrexate which isn't helping as much as we'd hoped. anyone with encouraging stories will help me immensely. it's difficult to deal with the depression and anguish that this brings.

thanks to all & thanks to everyone who writes about their personal experiences...i've been reading this forum for about a month & it really helped me while i was trying to convince my hubby to get checked out for this (he has several other symptoms...dental, migraine, etc)

i am looking for some hope.

thanks again

[nikki-uk]

Hi and welcome!!

My husband was dx with PA around 2 yrs before he also got a dx of celiac disease.

He suffered with terrrible pain and unfortunately quite alot of damage occured to his joints as he couldn't tolerate the drugs (methotrexate etc)

When my hubby was dx with celiac disease he was really very ill (bedridden most days) but within 6 weeks of going gluten-free his psoriasis disappeared.

Slowly - the gaps between flare ups in his arthritis widened. He does still get them, but they are no where near as debilitating as before he was gluten-free.

Unfortunately, the damage to his joints can't be undone.....but so long as he doesn't overdo it he usually ok.

So - yes - for my hubby his arthritis improved going gluten-free - but it hasn't disappeared.

He is also now on a new drug treatment (Enbrel) which also seems to be helping.

Good luck to you both

[lonewolf]

I had horrible psoriatic arthritis for a while. I have some permanent damage done to my joints, especially in my toes, but I am completely recovered other than that.

I went gluten-free, dairy free, egg free and soy free and ate mostly rice, fish, vegetables (no nightshades) and nuts for the first year that I discovered that diet was related. I don't think that going gluten-free alone would have done it for me. I'm still gluten-free, DF and SF. I was offered Methotrexate and Plaquinil, but never took either of them. I was told that I'd "be back, begging for medication", but that hasn't happened. Instead, I teach PE, coach basketball, workout and do triathlons once in a while.

Your hubby might need more than gluten-free, especially at first. It's totally worth it though - I wouldn't give up my life out of a wheelchair for any food.

[rock on]

Thanks for the feedback/support!

We just got his tests back & everything indicates that he does not have celiac....

I'm not sure I can believe this result!

First, the test was done at ARUP labs...not sure how reliable they are.

Second, my guy is on methotrexate & that lowers your IgA levels since it's an immunosupressant, so couldn't that skew the results in & of itself?

Ugh! so confusing! we were really hoping that we could have a clear cut answer to all this! but, it's not going to stop us from staying gluten-free. I have read a lot about false negative blood work. He's not willing to do the biopsy ($$ we don't have), so gluten-free it is.

lonewolf, maybe we'll add in the no soy, no dairy once we get accustomed to this new diet.

thanks again!

[lonewolf]

I technically don't have Celiac either. According to my gene test I don't have the right genes. But gluten-free has changed my life for the better. I hope your husband has success!

[Guest andie]

Rock on!

Good to hear from you. I've been busy with hockey tryouts, so if I'm slow to reply, sorry.

Yes my husband has psoriatic arthritis. What a long haul! He was diagnosed over 3 years ago and to make a long story short we had little success with the drugs. Methaltrexate he cannot take orally and had to stick to injections. Prednisone makes him PSYCHOTIC! I have a whole cupboard devoted to his drugs. He has been on Enbrol for 2 years. Improvement after many months, but just to the point where he could tolerate an 8 hour day at work. Lethargic, depression, stomach upset, migraines (bad), stiffness, pain etc. etc.

It was not him I started the diet for. It was my son. He's 10. Another long story, but for some reason I decided I had nothing to loose by trying the diet. My son had blood testing for Celiac that was neg. My husband has never been tested. He said he had nothing to loose by trying the diet either and since I would be doing it for our son anyway ......

The difference in the man vs. the boy is astounding! I think it took six weeks (and they cheated!).

He went from sleeping 15 hours per day and only awake long enough to take drugs, to working 8 hour continental shift, coming home cutting grass, chopping wood, playing lacrosse! He has had maybe 2 headaches (not migraines) in the last 5 months. He no longer takes stomach meds and is in fact off most of the drugs. He continues to take the Enbrol injections because I think he is afraid to go back to that dark, ugly place he was in with the pain and itch. The rash is almost none existant. (He had to vacuum the bed every morning)

I cannot even say that he is totally gluten free because we are both learning something new every day. My son continues to act like he is being glutened. (I cannot figure that one out.)

So in answer to the testing part, I don't think it matters if its pos or neg. You will know soon enough if it will work. I'm sure he has a long history of minor complaints and vague symptoms. It will depend where he is in the arthritis history as well. My husband had been somewhat controlled on the drugs before the diet started. Your husband could take longer because the inflammatory process is still full blown and will need to be controlled first.

It sounds like you're in the states. I'm in Ontario and the health care coverage is so much better for chronic illness. Enbrol is something like $350.00 per week (one injection), but we don't pay out of pocket. Apparently there is a newer one out in the states that hasn't crossed the border. (We're also slower to approve)

Bottom line, don't throw alot of money into testing. The only sure way is to do it. If it works for you, stay on it. If not, you'll need your money for further testing.

I very much sympathize with your husband. I saw what mine went through and it was horrible! I also know it was not easy for me and the kids either. Very difficult to live with someone who feels that miserable. Many compromises on your part.

I can give you more details if you need them. What we've tried and what works for us. We are not a gluten free household as I have 4 children. That is also a challenge.

Keep your chin up. Help has arrived! Keep tuned into this web site because there are some awesome stories and ideas here. I am also a nurse and may be able to help with some of that.

Andie

[mandasmom]

Rock on!

Good to hear from you. I've been busy with hockey tryouts, so if I'm slow to reply, sorry.

Yes my husband has psoriatic arthritis. What a long haul! He was diagnosed over 3 years ago and to make a long story short we had little success with the drugs. Methaltrexate he cannot take orally and had to stick to injections. Prednisone makes him PSYCHOTIC! I have a whole cupboard devoted to his drugs. He has been on Enbrol for 2 years. Improvement after many months, but just to the point where he could tolerate an 8 hour day at work. Lethargic, depression, stomach upset, migraines (bad), stiffness, pain etc. etc.

It was not him I started the diet for. It was my son. He's 10. Another long story, but for some reason I decided I had nothing to loose by trying the diet. My son had blood testing for Celiac that was neg. My husband has never been tested. He said he had nothing to loose by trying the diet either and since I would be doing it for our son anyway ......

The difference in the man vs. the boy is astounding! I think it took six weeks (and they cheated!).

He went from sleeping 15 hours per day and only awake long enough to take drugs, to working 8 hour continental shift, coming home cutting grass, chopping wood, playing lacrosse! He has had maybe 2 headaches (not migraines) in the last 5 months. He no longer takes stomach meds and is in fact off most of the drugs. He continues to take the Enbrol injections because I think he is afraid to go back to that dark, ugly place he was in with the pain and itch. The rash is almost none existant. (He had to vacuum the bed every morning)

I cannot even say that he is totally gluten free because we are both learning something new every day. My son continues to act like he is being glutened. (I cannot figure that one out.)

So in answer to the testing part, I don't think it matters if its pos or neg. You will know soon enough if it will work. I'm sure he has a long history of minor complaints and vague symptoms. It will depend where he is in the arthritis history as well. My husband had been somewhat controlled on the drugs before the diet started. Your husband could take longer because the inflammatory process is still full blown and will need to be controlled first.

It sounds like you're in the states. I'm in Ontario and the health care coverage is so much better for chronic illness. Enbrol is something like $350.00 per week (one injection), but we don't pay out of pocket. Apparently there is a newer one out in the states that hasn't crossed the border. (We're also slower to approve)

Bottom line, don't throw alot of money into testing. The only sure way is to do it. If it works for you, stay on it. If not, you'll need your money for further testing.

I very much sympathize with your husband. I saw what mine went through and it was horrible! I also know it was not easy for me and the kids either. Very difficult to live with someone who feels that miserable. Many compromises on your part.

I can give you more details if you need them. What we've tried and what works for us. We are not a gluten free household as I have 4 children. That is also a challenge.

Keep your chin up. Help has arrived! Keep tuned into this web site because there are some awesome stories and ideas here. I am also a nurse and may be able to help with some of that.

Andie

I can tell you for sure that Enbrel has changed my life!! I have has psoriais and psoriatic arthritis as long as I can remember ----probaly since I was 8 or 9 years old-and for the first time in my life I am pain free!!

[Ellie342]

Thanks for the feedback/support!

We just got his tests back & everything indicates that he does not have celiac....

I'm not sure I can believe this result!

First, the test was done at ARUP labs...not sure how reliable they are.

Second, my guy is on methotrexate & that lowers your IgA levels since it's an immunosupressant, so couldn't that skew the results in & of itself?

Ugh! so confusing! we were really hoping that we could have a clear cut answer to all this! but, it's not going to stop us from staying gluten-free. I have read a lot about false negative blood work. He's not willing to do the biopsy ($$ we don't have), so gluten-free it is.

lonewolf, maybe we'll add in the no soy, no dairy once we get accustomed to this new diet.

thanks again!

Rock on -

which tests did he have? In the study I read on gluten and psoriatic arthritis, it was the 30% of patients who were positive for anti-gliadin antibodies who improved on a gluten-free diet - even though NONE of them were positive for anti-ttg or anti-emsa (and therefore none of them met the strict GI criterion for a diagnosis of celiac disease). Those patient who were not positive for any of the antibodies didn't respond to the gluten-free diet in that study.

Ellie

[rock on]

Hi Ellie...

I am actually a little confused about the test that he had done. His doctor ordered a 'Celiac Panel' (that's all that was written on the script) which I only now know consists of several tests...but these are the results that we received:

Immunoglobulin A 152mg/dL (with a reference range of 68-378)

TTG AB IgA w/o Titer 1.0AU (with a positive result needing to be 7AU or greater)

I thought that the anti-gliadin tests aren't used that much because they're not as sensitive as the TTG tests. What does 'anti' mean? Was the TTG test result that we received an 'anti'TTG? It does not say anti anywhere on the page.

I am interested in the study that you mention...do you have a link to it?

I am really frustrated that the test the lab ran doesn't seem like a complete Panel. Plus, I have heard that there are only a couple of labs that are reputable for processing Celiac testing. It's especially frustrating because he's been on the diet for about 4 weeks now & he feels worse than before he started. He said that he doesn't think he has Celiac & is wondering if he should start eating gluten again. I personally believe that he does have it....after researching it for so long, his health history as a puzzle has finally come together. I was shocked at the result.

What is the test name for the anti-gliadin antibodies? I guess now it really doesn't matter since he's been on the diet for 4 weeks. But, would still be good to know.

Thanks!!

[psipsina]

Hi! I know this thread is a bit old but I wanted to chime in with my experience. I was dx'd with psoriatic arthritis two years ago. All of a sudden my hands swelled up and became very painful. My labs came back with an elevated C reactive protein (a sign of inflammation) so my primary care doc sent me to a rheumatologist. She dx'd me with PA after I tested negative for everything else under the sun. Since I'd had some minor skin rashes as a kid she decided it had to be PA. I was doing some reading on my own and had seen that there is a connection for some people between arthritis and food allergies and I decided to go to a naturopathic doctor on my own and get tested. He found multiple food sensitivities including gluten and that I had a systemic candida overgrowth. He treated the overgrowth and I changed my diet and I have been symptom free for two years with no prescription medicine. On the few occasions when I've been accidentally glutened my hands ache a bit! I don't have a diagnosis as celiac (I've never bothered because I know this diet is working for me) but I do know that my arthritis symptoms and my diet were definitely linked.

[taweavmo3]

I find this thread really interesting.....my 8 year old has had full blown psoriasis for two years now, but the rashes started when he was three. He is gluten/casein free, and has been for nearly a year. I really haven't seen his psoriasis respond at all to the gluten free diet. Of course, maybe it would be alot worse if he weren't on the diet, so maybe it is responding in that way.

We just had to increase his steroid cream, and he's also on Dovonex (expensive stuff!). It is finally clearing, but in the small spots that clear, they always come back within a couple of weeks. It's frustrating.....and now he's been complaining of back and knee pain. These are probably just ordinary kid aches and pains, but it makes me a bit worried.

Anyway, I've always wondered if there is another food that may be triggering new patches. But the pedi derm made me feel like an idiot when I asked about allergy testing, she said I'd be wasting my money b/c the two are not related. Argh......I am honestly so fed up with mainstream doctors at this point.

[rock on]

psipsina - thanks for digging up this thread that i started & posting your experience! i'm always looking for people who have psoriatic arthritis like my husband. that's so interesting that you found that you had a systemic candida problem....i've been suspecting that with my husband for a while. he's been gluten free for 4 1/2 months now & has had some relief from the joint pain, but he's definitely not pain free. i made him spit into a glass of water one morning (this is a home test for candida that i read about) and his spit almost immediately fell in particles to the bottom of the glass...apparently a big indicator that he has a yeast overgrowth. i also just printed out & gave him a questionnaire for candida overgrowth & he scored off the charts.

how did you treat your overgrowth? how long did it take? i think i'm going to try to convince him to give it a try. he always gets encouraged when we find people suffering from the same thing he does & they find something that works for them.

taweavmo3 - i'm sorry that your son has to deal with psoriasis. i wanted to tell you that during the 4 1/2 mos that my husband has been doing the gluten-free diet we have noticed that soy really makes his psoriasis worse. we discovered this when he felt he needed a different source of protein other than hamburger. he got some tofu & ate it for a couple of days for lunch &/or dinner. over that time his psoriasis patches began to turn red & irritated & worsen. when we saw that, we realized the tofu was the only dietary change & immediately removed it. over a couple of days, the redness disappeared & the white flaky area shrunk down. now if he has any tofu, his symptoms get worse.

so, perhaps your son has some other food allergy like soy. i also know that popcorn will give my hubby a headache. i've always felt that his psoriasis is related to diet. check out the book healing psoriasis: the natural alternative by dr. (i think it's dr) pagano. it's an older book, but he had success with relieving the psoriasis of many patients through diet. you might also want to supplement your son with omega 3s. i had a friend who suffered from psoriasis so bad that she never wore shorts or skirts. after starting a fish oil regimen, she said her psoriasis disappeared. we take carlson brand very fine fish oil liquid. it tastes like lemon...seriously no fishy taste at all & we tried several different brands. this is the best & it has high levels of EPA, the part of omega 3s that are most likely to help your son. i hear some people put this oil on salads & that nobody (even kids) is the wiser.

take care all!!

[taweavmo3]

Thanks so much for the book recommendation! I have been so concentrated on getting my Celiac daughter on the right track, that I haven't spent as much time researching P for my son. I love this board, you guys are always so full of helpful information.

I just started him on an omega 3,6,9 supplement about a week ago, and it does seem to be helping. He's such a trooper, he'll take anything if he thinks it will help his patches clear. When they are really itchy, it drives him crazy. Since starting the oil, no new patches have popped up, which is progress. I'll have to look into his diet more too, I never did fully buy it when the derm said the two weren't related, lol. Thanks again!

[psipsina]

psipsina - thanks for digging up this thread that i started & posting your experience! i'm always looking for people who have psoriatic arthritis like my husband. that's so interesting that you found that you had a systemic candida problem....i've been suspecting that with my husband for a while. he's been gluten free for 4 1/2 months now & has had some relief from the joint pain, but he's definitely not pain free. i made him spit into a glass of water one morning (this is a home test for candida that i read about) and his spit almost immediately fell in particles to the bottom of the glass...apparently a big indicator that he has a yeast overgrowth. i also just printed out & gave him a questionnaire for candida overgrowth & he scored off the charts.

how did you treat your overgrowth? how long did it take? i think i'm going to try to convince him to give it a try. he always gets encouraged when we find people suffering from the same thing he does & they find something that works for them.

There are some good threads about the candida diet and supplements here in the other food intolerances forum. Also these are some great online resources:

Open Original Shared Link

Open Original Shared Link

The first time I did it with a naturopathic doctor who also did an IgG blood test for other food allergens. I am actually doing the diet again on my own because I ended up on a ton of antibiotics after being exposed to mold and I'm feeling some of the symptoms again. The basic idea is that you have to take supplements that kill off the candida while starving the candida of all the foods it likes (sugars, carbs, dairy, fermented things, alcohol). The websites above have comprehensive lists of all the stuff to eat and all the stuff to avoid. There are also some great foods that act to kill the candida like coconut oil and raw garlic. You are also supposed to take a good probiotic to help to repopulate the gut (folks on here recommend Natren's Trinity).

I do the hardcore phase of the diet for about 4-6 weeks (I usually feel really really good by two weeks and the cravings stop). I then add back in some fruit and some goats/sheeps cheeses and a bit more carbs like potatoes and rice and do that for another 6-12 weeks while still taking anti-fungal supplements. Some people do it longer or forever. You have to rotate the anti-fungal supplements throughout the process because the candida can learn and become resistant to the meds. Even when I go off the supplements I stay gluten free and yeast free and I still try to minimize carbs and sugars.

The part that sucks is the first two weeks when you will have really really bad cravings for all the foods the candida wants (sometimes it feels like you're the one dying not them) and you will suffer what is called "die off". When the candida starts dying the cells actually burst and release all of their toxins into your system at once . . . these are the toxins that have been causing all the bad symptoms like the athritis and the brain fog so these symptoms can actually feel worse in the beginning of treatment which is really hard to cope with mentally. I get really bad body aches and headaches too and some people get really bad nausea. There are things you can do to help your body handle and process the load of toxins like drinking lemon juice, taking activated charcol tablets, and detox baths. Working out helps too because you sweat out the toxins though its really hard to make yourself do anything when you are feeling that crummy. While the die of is crummy for me it was nothing compared to the side effects of all the arthritis meds they had me on and it only lasts for a few weeks and then you feel amazing.

[psipsina]

I know that you said that your Husband is a bit skeptical about the candida-PA link so when I stumbled upon this today I thought of you. I found a scientific journal article that linked candida to autoimmune arthritis. It probably wouldn't be an interesting read with no science background but I thought maybe the existence of the article would help you make your case to try the candida diet. Here is the info:

Biological & Pharmaceutical Bulletin

Vol. 30 (2007) , No. 8 1589

Cell Wall β-Glucan Derived from Candida albicans Acts as a Trigger for Autoimmune Arthritis in SKG Mice

" The results strongly suggested that fungal metabolites such as beta-glucans have the capacity to induce and exacerbate autoimmune diseases such as RA."

[rock on]

wow, thanks for thinking of me!! we found the article online & downloaded it. my husband is actually a science-y kind of guy & he read the article. maybe i'm one step closer to convincing him! his dad is a doctor (cardiologist) & has told my husband that if someone has systemic fungal growth they'd be dead. so, he's slow to come around to the thought that candida can be in his system causing him joint pain. but, this article maybe has him thinking.

thanks again!

[mushroom]

wow, thanks for thinking of me!! we found the article online & downloaded it. my husband is actually a science-y kind of guy & he read the article. maybe i'm one step closer to convincing him! his dad is a doctor (cardiologist) & has told my husband that if someone has systemic fungal growth they'd be dead. so, he's slow to come around to the thought that candida can be in his system causing him joint pain. but, this article maybe has him thinking.

thanks again!

rock on:

I am also considering the candida elimination diet, but it does seem like such a big hurdle. Going gluten-free the last two months has been hard enough.

I was diagnosed with psoriatic arthritis four years ago. Each Rx they gave me worked for the arthritis but the side effects were terrible. Methotrexate nearly killed me (I declined Prednisone because I already knew I could not handle that); the combination of sulfsalazine and diclofenac put me into kidney failure from which I fortunately recovered; and then the Plaquenil made my psoriasis so much worse, I felt like I walked around with chicken pox for three years. Each time I stopped a med the arthritis came roaring back and I was crying out for help. Had no idea at that time of any possible link between autoimmune diseases and diet.

Finally, the Plaquenil caused my feet and ankles to swell up, ulcers in my mouth and other bad things, and to make matters worse the arthritis returned to my neck and shoulders, wrists and toes. At about this time my gluten free sister came to stay and after her visit I decided I had nothing to lose by trying to go gluten free. At that time I was off the Plaquenil and taking nothing for the arthritis. The first thing that happened was that the pain in my neck, shoulders and wrists went away, then the pain in my toes and finally all the arthritis symptoms. I was lucky in that I really worked on all my joints that were affected, straightening out my fingers and toes and massaging them constantly, so I have no permanent joint damage.

The next thing that happened was my psoriasis started disappearing, little by little, a patch here and a patch there. What I had thought to be psoriasis on my feet (I had had it and it still tries to come back on the palm of my hand) turned out to be fungal, so now the only place I really have psoriasis (badly!) is on my scalp. I feel like Pig Pen walking around in a shower of silver flakes! I have now been gluten free (with some errors along the way) for almost three months, and what a different person I am. I had gone ahead and gotten approval through Pharmac to take leflunomide, but have never needed it. We do not have funding here for Enbrel, Infliximab or Remicade for psoriatic arthritis--I guess we are not a big enough pressure group and the cost is pretty prohibitive, so those had not been possibilities for me.

Along with the PA I have also had terrible digestive problems and the bloating and insomnia that has been a feature of my life for over 30 years has gone now and only comes back when I accidentally get glutened. However, with my immune system destroyed and all the other infections I have had, antibiotics have featured prominently in my personal pharmacopeia for years and I have to get back to my naturopath now that I have recovered from three weeks of flu and three weeks of acute bronchitis over Christmas/New Year.

Anyway, I decided to stop poisoning myself and with my naturopath's help start feeding myself instead. Do encourage your husband to do whatever is necessary with his diet to make himself better because the response can be absolutely amazing. I did not feel the need to do the testing--just decided to try things and see if they worked. I no longer rely on the medical profession for any advice on this aspect of my health.

Good luck to you both.

[rock on]

hi mushroom,

thanks for sharing your experience. i think that my husband is feeling more & more encouraged that he can control what's going on with him. we've been on the gluten free diet for 4 & 1/2 months now. i am doing it for gut related reasons & he for all of his life long health ailments. it's been up & down for him. he's discovered that soy & corn give him reactions during that time...soy especially really exacerbates his psoriasis. his arthritis has gotten better, but not completely.

he had a very swollen knee at the beginning of 2007 & promptly started taking methotrexate again...he'd taken it the year before for the same reason & it completely healed his knee, but he didn't want to continue taking it bcz it made him ill. about 8 months after stopping it, he flared up again. he ended up having to take even more mtx to get his knee under control this time, but it was still painful to him after months of being on it. he's just dealing with the mtx making him sick because he's petrified of having another flare up.

the gluten-free diet has slowly but surely helped his knee. it's not warm to the touch anymore & he actually shovelled a ton of snow yesterday which is something of a small miracle in & of itself. he's a little sore today, but not in excrutiating pain. so, i do believe that the gluten-free diet has helped....especially as far as his attitude goes. he has actually been happy lately. smiling for no reason, laughing with me & actually dancing. he was a different person 6 months ago...dark, depressed & negative all the time. i know he's on the path of healing & last night he said he might be open to trying the candida diet or at least implementing some of the tactics into our current diet. i feel like the yeast issue could be the precipitating cause of his issues. i have a gut feeling (pun kind of intended) that he could resolve the rest of his joint pain issues if he could restore balance in his gut flora.

i am so happy for you that going gluten free has helped you so tremendously. i am always elated & pleasantly surprised to hear from people who have been able to lead themselves to health. i hope that your psoriasis on your scalp heals soon. perhaps you should think about soy....i know that if my husband eats any his elbow patches start getting red & grow double in their size. as soon as it's removed, his body is able to heal up. ev'rbody's different.

if you begin on the candida diet, please keep us posted. i think we'll start by trying to eliminate all the soda we drink (we love gingerale here) & add in some coconut oil & pau d'arco tea. we've already begun drinking water with lemon juice every day. trying to stay away from sugar will be the biggest challenge.

best of luck to you!