Joint Pain Testing

[Darn210]

I'll try to be brief . . .

My daughter was diagnosed with celiac disease 3 years ago. All of the immediate family were tested (& negative). I had no symptoms but by that time I had already read plenty of posts that said "I didn't even realize <insert symptom> was a problem until I removed gluten." I tried a 6 wk trial diet after my test just to see if I noticed any difference going off gluten and likewise if I felt "anything" going back on gluten. Nada.

Over the last few years (basically since 40), I feel like my body is wearing out. However, I look at my friends and they don't complain of the aches and pains that I have. My problems are mostly joint related. This summer seemed worse than ever to the point where there are certain (mostly recreational) activities that I decline due to not wanting to deal with the joint pain that will follow. I finally took myself into the doc's and said I wanted to be tested for Rheumatoid Arthritis. I had a high ANA (> 1:640 with a speckled pattern). The other RA tests came back negative. He then tested me for lupus (negative), Sjogren's (negative), connective tissue disorder (negative) and checked my thyroid (fine). My initial reaction was to freak out when he started testing me . . . yeah, like the RA was gonna be fun . . . but after a few days I just knew everything was going to come back negative. I don't have a single symptom on any of those symptom lists except for the joint pain. My one additional symptom that showed up this summer which may or may not be related is tingling/numbness in my right arm (below the elbow). The doc thought I may have damaged a nerve in my elbow which I may have, it does seem to be slowly improving. I got my call today that everything DID come back negative. I've been told to wait and see if it goes away on its own. They are thinking some kind of virus. If my joint pain is the same in a couple of months or I develop any new symptoms, come back in and they will take another look. However, even though my joint pain is worse this summer, in hind sight, I think it has been an issue for years, as in "I don't see any way that I could possibly go snow skiing again" and I don't think 46 is too old to go snow skiing.

So, here is where I'm gonna ask for opinions.

First . . . is there anything else I should be investigating?

Second . . . I decided to do another trial diet. I know that there are many members on here that had joint pain issues. Based on what I've read, it seems it is one of the symptoms that takes longer to resolve itself. I was thinking of a 6 month trial. Any opinions here?

Third . . . I recently gave up aspartame. I would appreciate anybody's experience with this also . . . symptoms and time it took for them to resolve.

OK . . . Have at it . . . and thanks.

[bluebonnet]

i've been gluten free since jan of '10 with the exception of some cc's and a 3 week gluten challenge back in may. i still struggle with joint pain. i have had all of the tests before celiac testing began (like ra, lupus, etc.) and they were negative. i feel like at times i notice an improvement but i also notice its aggrevated if i ingest gluten. i think if you suspect gluten that you should do a min. of 6 mo. since joint pain seems to take longer to subside. did they check your vit. d levels? mine were extrememly low so i'm on step out doses and will do further testing to make sure they are up. also, i'm sure you know your kiddos received their celiac gene from a parent ... was it you? have you been genetically tested? best wishes!

[Chakra2]

That stinks about your joint pain. I have had joint pain since I was 13-14 (33 now). Back as a teenager I was told that I had pain because I was a girl who played sports. Over the years I would occasionally go back to doctors about it and was always told that it was inevitable as a runner. At age 27 I had knee surgery to try to address the pain. Didn't help. Was told I didn't do my rehab with enough dedication. In January, I went gluten free just doing an elimination diet to check for food allergies. One realization led to another and I learned about celiac disease. I now think I have had it my whole life, based on childhood health issues. My joint pain improved substantially within weeks of removing gluten and it returns if I get glutened. But it actually got worse a few months into the gluten-free diet. I went to my dr, got tested for RA and other autoimmune diseases, everything negative.

Here comes the good news: I finally went to a holistic nutritionist for a consultation about gluten-free nutrition who said to avoid nightshades (tomatoes, potatoes, eggplant and peppers) while healing. My pain vanished within days!!!!! I cannot tell you what a joy this has been for me. I knew I was too young to have hands and feet (and knees and hips) that hurt every day.

My mom has arthritis and has had it for decades. Not once in all her dr visits has anyone ever suggested that foods could cause joint pain. I am a lawyer so I think I can imagine how hard it is to master a medical specialty and I know what it's like to have people beat up on your profession. So I don't want to dismiss an entire vocation but COME ON, PEOPLE! I can't believe that a dr operated on a healthy 20-something's knee without suggesting a 30-day trial of no nightshades. Free, easy, no side effects. I could have saved a lot of money and time -- I actually put a lot of effort into my rehab! Not one of the 7 or 8 doctors I've seen about joint pain ever mentioned food. Not even as an aside like, "I don't buy into this but some people say . . ." Why not? I just don't get it. When I mentioned to my first GI doctor that avoiding nightshades helped my joint pain he said, "What are nightshades?" Do doctors not use google? Granted, I didn't know about nightshades either but I don't put on a white coat and put myself out there as someone who knows how to make people feel better. Sorry for the tangent -- my doctor frustration is really bubbling up tonight.

In summary -- try cutting out nightshades! I was also already not eating dairy, soy and corn. So those other foods might have played a role too but the nightshades thing was an absolute miracle for me.

Good luck!

Chakra2

[mushroom]

Janet, Janet, Janet, you have been here long enough (maybe too long )

These are symptoms that definitely call out for dietary trials, especially gluten and nightshades, as Chakra2 says. Skeeter and Smackle got this stuff from someone, and it sounds like it might be you. Do yourself a favor and give it a try right now - you have only your symptoms to lose. and yes, I think for joints six months is a good trial.

[Darn210]

Skeeter and Smackle got this stuff from someone, and it sounds like it might be you.

Well, if you knew all about the digestive "concerns" on my husband's side of the family, I wouldn't be the first choice for the celiac gene provider. I tried to get my husband to do a trial diet to see if he could get rid of his (extremely potent) GERD medication. He wouldn't even try.

I do remember not feeling joint relief on my 6 wk trial but that was early on in the whole celiac/gluten education. If I knew then what I know now, I would have gone longer.

Nightshades, huh? That will be tougher than gluten, I think. I say that because I already know the gluten free ropes because of Skeeter. Are nightshades an all or nothing kind of thing . . . meaning . . . is cc problematic? Actually, it's probably the potato starch that I use in cooking that concerns me the most.

[Darn210]

Here comes the good news: I finally went to a holistic nutritionist for a consultation about gluten-free nutrition who said to avoid nightshades (tomatoes, potatoes, eggplant and peppers) while healing. My pain vanished within days!!!!! I cannot tell you what a joy this has been for me.

"while healing" . . . did you try reintroducing them? . . . and if so, what happened? . . . or were you so happy with the result, you left them behind gladly?

Can you sense my reluctance?? . . . I've got a great cake recipe that calls for potato starch - tapioca starch changed it drastically . I'm looking for some glimmer of hope that I can eventually use potato starch as an ingredient.

I feel like a whiney baby . . .. . .

I knew I was too young to have hands and feet (and knees and hips) that hurt every day.

Yep this is how I feel . . . and I'm over a decade older than you

[jerseyangel]

Janet, HIH did I miss this earlier? A couple things come to mind--I had a few joint problems prior to being diagnosed. Not an all-over type thing, but an extremely painful, swollen, and red joint in my thumb, and severe hip pain on the right side that made it difficult to turn over in bed in the morning.

Both of those things eventually went away on the diet, and have not returned.

The feeling in your arm sounds awfully familliar--in the year or so before becoming gluten-free, I had an "altered" feeling in my left arm between the elbow and fingers that was somewhere between asleep and tingly. After several months of that not getting better or worse, I began to get similar feelings in my lower legs and feet. Feelings of burning on the soles of my feet and my face and inside of my mouth followed.

Considering Skeeter's diagnosis, I think I would try another trial of the gluten-free diet--say for 3-4 months and see if anything has changed. At that point (or before), also try cutting out the nightshades (sorry)--I would think that you would notice a change much more quickly with those, and it wouldn't necessarially have to go on for months if no relief happens.

Keep us posted

[jerseyangel]

I forgot to address the aspartame question--I can't tolerate it or Splenda. Aspartime causes me GI distress, while Splenda caused neuro symptoms that were quite scary.

When I gave them up (separately) I don't recall anything except feeling better--no withdrawl or anything.

Have you considered a gene test?

[Darn210]

Janet, HIH did I miss this earlier?

Yeah . . . I was wondering where in Sam Hill is Patti??!!! . . .

I forgot to address the aspartame question--I can't tolerate it or Splenda. Aspartime causes me GI distress, while Splenda caused neuro symptoms that were quite scary.

When I gave them up (separately) I don't recall anything except feeling better--no withdrawl or anything.

Have you considered a gene test?

Well, I sure don't have aspartame withdrawal . . . but I really miss soda. I can't go for the full sugar sodas . . . I pay Weight Watchers big money to help me lose weight and full sugar sodas ain't on the list of OK foods. I was wondering if Splenda and Stevia had the same issues. (I have not got around to googling it, though.) Sounds like Splenda does.

I was debating some baseline testing . . . a repeat celiac panel (the last one was three years ago) and possibly the gene test. I was even debating asking for the ANA to be redone. It's like I'm trying to get all the data together to prove something to somebody. I'm trying to figure out who? Me? the doctor? anybody that I think will give me cr@p about my health/diet? . . . this is where I'm getting bog down in actually doing something. Don't want to start until I'm sure I'm done with testing. Don't want to spend a lot of money on testing that I don't need. So, then . . . am I stalling??

[GlutenFreeManna]

If you have been eating gluten pretty regularly all this time, then I would get the celiac blood panel re-done first. I had mainly neuro symptoms before going gluten, soy and dairy free. My first ANA test came up high and second one came up normal. I had an MRI of my entire spine and brain with nothing to show for it (except the huge bill for the portion not paid by my insurance). The neurologist blew me off as a head case at that point (I was only 25 or 26). If I had known about celiac disease back then I would have at least done the blood test. Once it's done you can still trial gluten free again to see if it helps, or better yet do an all out elimination diet. Eliminate all 8 top allergens as well as gluten and anything else that might bother you (nightshades?) for three weeks and see if it helps. I did the elimination diet before I even knew about celiac--I cut out all eight common allergens, all grains, all dairy, all sugar and sugar subs, legumes, msg, and yeast in any form, and all fruit except for berries for one month. I pretty much just ate grilled chicken and steamed veggies for a month. Then I added things in one at a time to test my reactions. Soy gives me joint pain and joint swelling when I eat it several days in a row. The effect is cumulative however over several days and not an immediate reaction. So you might want to add soy to the list of things to trial eliminate.

[jerseyangel]

I was debating some baseline testing . . . a repeat celiac panel (the last one was three years ago) and possibly the gene test. I was even debating asking for the ANA to be redone. It's like I'm trying to get all the data together to prove something to somebody. I'm trying to figure out who? Me? the doctor? anybody that I think will give me cr@p about my health/diet? . . . this is where I'm getting bog down in actually doing something. Don't want to start until I'm sure I'm done with testing. Don't want to spend a lot of money on testing that I don't need. So, then . . . am I stalling??

For sure, if you are even thinking about testing/repeat testing then by all means don't change your diet--of course you already know that. Truthfully, I don't think you are trying to prove anything to anybody, you just want to have a clear picture of what's going on, and that's very understandable.

Look at the whole picture and then take it one step at a time. Since you have a child with diagnosed Celiac, you may be able to have the gene testing covered by insurance. It's not diagnostic, but it's another piece of information--as would be the repeat ANA. Since your last Celiac panel was 3 years ago, it's reasonable to repeat that too if you want.

You're not stalling, just thinkin' it all through