Celiac disease and reactive arthritis

nowakb · Joined: 25 Feb 2005 Posts: 52 Location: Orange Co., NY

Hi everone! I was wondering if anybody else out there has either had, or heard of getting, reactive arthritis as a result of going on a gluten free diet? I've been gluten free for a little over 3 months now and about 1 month after being on the diet, many of my joints began hurting and my muscles often ache (kind of like flu). These are just 2 of many symptoms that I've been experiencing that I wont list right now.
Anyway, I saw a rheumatologist last week who said that it is possible that I might have reactive arthritis. The reasoning is that after going gluten free, my body still has a whole host of self antibodies floating around and they have gone to my joints because they are no longer being drawn to my intestines. If this is truly the case, the symptoms should subside after another ? number of months. I am really wondering if anyone else has ever heard of, or experienced this especially since my symptons seem to be getting worse and not better. I had an ANA done (by GI dr) about 2 months ago which was equivocal and the rheumy took blood to test again last week, but as she's on vacation, I wont get any results until next Friday. Also, when I Googled "reactive arthritis" all the info was about arthritis as the result of various bacterial or viral infection.
Sorry this post is so long, but this is really starting to bother me! Sad

Thanks, and I hope that you all have a good, gluten free, Memorial Day weekend! Very Happy

Becky

mjbonsais · Joined: 21 Sep 2004 Posts: 81

Are you off milk/casein? For whatever reason, milk tends to aggravate arthritis in all forms even MS. If you are getting any milk whatsoever, discontinue and see if it helps. It may take time because antibodies live on until there own time for depletion within the body.

Just an idea here

Mary Jo
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nowakb · Joined: 25 Feb 2005 Posts: 52 Location: Orange Co., NY

Hi Mary Jo and thank you for the reply!

No, in fact I'm eating Swiss cheese and rice cakes for lunch right now!! Sigh, I tried giving up dairy several weeks ago when I thought that I might be lactose intolerant, but I only lasted 5 days! I guess that I could try again and see what happens - no cheese - EGADS!!!

Thanks again,

Becky

skbird · Joined: 13 Jan 2005 Posts: 245 Location: California

Yeah, dairy is a hard one. I did give it up for a month last fall (OK, I cheated a couple of times with pesto sauce on cheese tortelini... Smile

) but fortunatly do not appear to be one of those who needs to remove it from my diet.

Your situation sounds more severe but I recently had some gluten, on accident, and all the joints in my right hand ached and were stiff for a couple of days. Totally new reaction for me. It was a day or two after eating gluten. So it does follow that the antibodies that form would possibly go to your joints.

I'm sorry I don't have a suggestion for you, other than double checking everything you eat to make sure you're not getting contaminated by your food. I hope you are feeling better soon! That sounds literally like a pain.

Take care
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Stephanie

mjbonsais · Joined: 21 Sep 2004 Posts: 81

Yes, when you go gluten free if you accidentally injest any form of gluten your system will react mor sensitively. Our bodies "know" when to say NO right? lol
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skbird · Joined: 13 Jan 2005 Posts: 245 Location: California

I can tell you mine REALLY lets me know it!!! Wink

What's that saying, "pay to play"?

Ugh...

Very Happy

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Stephanie

mjbonsais · Joined: 21 Sep 2004 Posts: 81

My bones used to ache especially the thigh bones at night. After taking wheat and gluten out they haven't ached at all (knock on wood). I think I have a sensitivity to soy and maybe corn too. I crave sugar ~ so~ please don't say it: "NO MORE HEAVY SUGARS"! <I'm feeling this is the case for me though. We do what it takes.

Have a wonderful Memorial Day Everyone!

Dean and I celebrated twenty-five years of marriage and in 1980 it was Memorial Day weekend! Wow known him for thirty years now. Gotta love him.

MJ
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skbird · Joined: 13 Jan 2005 Posts: 245 Location: California

Hey, happy anniversary!!! That's cool! Next weekend is my husband's and my 6th... also both of our birthdays (June 3 - DH, June 4 - Anniversary, June 5 - my bday). It's always fun.

I flirt back and forth with sugar - am on my way off or limited again (of course my biggest binges on sugar these past few months are still about 25% of what the average person eats) and I am also thinking corn is a problem. I crave that waaaaaaaaaaaaay too much.

Oh well, what are a few more things to avoid, when you already avoid a bunch? It gets easier!!!

Happy Memorial to y'all - I know I'm going to enjoy!
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Stephanie

Jeannine - not logged in · Guest

You might want to try giving up high acid foods like orange juice, Citrus & tomatoes etc. Sometimes that aggrevates the arthritis - ummm & potatoes will do it to me - go to sweet potatoes for a while they are so good for you & "safe" usually.

nowakb · Joined: 25 Feb 2005 Posts: 52 Location: Orange Co., NY

Hi, and thanks everyone for your input! Very Happy

I have not given up any foods other than those with gluten and my hubby and I are very careful about what I eat, but I did get glutened 3 days ago by mistake (and I think that it was only a very tiny amount). My reactions were all intestinal and my lower back hurt (same old symptoms as pre-diagnosis), so I don't think that current gluten consumption is what is causing the problems with my joints and muscle aches (and headaches and hair falling out and feeling weak and frequent pee-ing, etc.) I guess it could just be left-over antibodies, but... Well, I just hope that I find out and am not left hanging by dr's who can't figure out my "unspecific" symptoms. My PCP told me that I might have to feel a lot worse before anyone can diagnosis me or just wait for it to go away, but then the rheumy told me about the Reactive Arthritis. Sigh! Confused

Anyway, I could try leaving out most foods for a week and then slowly re-introducing them, and I know that I probably should, but somehow I'm just not motivated to eat only plain meat, fruit, and rice (or potatoes)!

Happy anniversary MJ and skbird! My 18th anniversary with my hubbby, Thom, is in a couple of weeks too!

Happy weekend-ing!!

Becky

mjbonsais · Joined: 21 Sep 2004 Posts: 81

There are days where I wake up with one (tailbone area) and it lasts a while then goes away. That is why that just maybe it could be other non-gluten foods causing reactions.

We just bought a tempupedic mattress so go figure! It is very comfortable but stress can play a major role in aches too!

Becky--- Happy 18th to you and hubby too! Say, on our 18th we renewed our vows also! <usually it is for 25th but glad I did so because the priest that did was a good friend and he passed away last year.

Be happy

MJ
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skbird · Joined: 13 Jan 2005 Posts: 245 Location: California

Wow, that's a lot of anniversaries! Well, I guess it is about to be June... probably are more this time of year than any other.

Becky - you mentioned hair falling out. I have read somewhere recently that you should keep track of all the different things that happen that could be tied to a gluten reaction as you will not always have all the same symptoms. I got glutened pretty badly about a month ago (from a miniscule amount) and my hair has been falling out about double the regular amount lately. It drives me nuts!

Anyway, just something to add to the list...

Sad

As for the weekend, nothing like waking up on Sunday and realizing there is still one more day off!!! Very Happy

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Stephanie

aklap · Joined: 02 Oct 2004 Posts: 8335 Location: WI, USA

MJ, Steph, Becky - Happy Anniversaries!!

Wow - lots of June babies here! Mine is the 27th
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

mjbonsais · Joined: 21 Sep 2004 Posts: 81

How do you get your images onto the post site? Do they need to be from the web per se? I want to learn how to do this. Can you put a .jpg of your own (like you and your wife's pic)?

Please with gluten free toppings?!

javascript:emoticon(' Idea

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PrtPaty · Joined: 09 Dec 2004 Posts: 65 Location: Oregon

Hi there,

Muscle and joint pain and hair loss are very common symptoms of low thyroid. Mine are waaayy better from being on thyroid medication. Hypothyroidism is very common among celiacs. It also causes low energy levels as does anemia and gluten ingestion. (I actually felt worse fatigue the first few days off gluten) Frequent urination can be from diabetes or caffeine consumption, not sure what else.

Muscle pain can also be from lack of getting enough calcium and magnesium from malabsorption. So, if the doctors haven't tested your thyroid levels or blood sugar or iron it might be something to consider. One note is that not all doctors use the new criteria for low thyroid. My old doc. said my TSH levels were normal, but my new doc. took my symptoms into consideration as well as the new criteria. My muscle and joint pain didn't go away until my thyroid level was near the line of being hyperthyroid. So-what was considered "normal" was not normal for me.

Don't give up. My old PCP and several specialists should have picked up on my symptoms, but none did. Change Dr. if you have to. Keeping a food diary too can help narrow down the symptoms related to food. Keep learning and searching. I wish you success.

Patty