So sore and achy...

[Ender]

I give up. There's got to be something else going on with me than gluten issues. 

I've had pretty horrible all-over joint pain, muscle soreness, stiffness, and insomnia since before Thanksgiving, a few weeks after going gluten free and four days after getting a flu shot. I do not think either of those things has anything to do with it though. I don't know why I have these problems. I have LOTS of theories that never seem to pan out. The last theory was that I was getting gluten-CC from three messy roommates who kept using my stuff. But I fixed that problem, at least well enough so that it shouldn't be an issue. I'm still having the same pains though. 

Next I thought perhaps I had ingested excess oxalates (since November) since I practically lived on sweet potatoes, summer squash, and green apples. But when I tried to start a low-oxalate diet last week, white rice and rice cakes gave me trouble (I hadn't had them since October). Both are low oxalate. I used Lungberg brand for the rice and Quaker gluten-free for the rice cakes. Not only did my soreness and joint pain ratchet up again, but I've been headachy all week and my hands went numb several times last night...just like it used to when I started this madness and cut out all grains (and gluten). I had the same reaction back then with wild rice, corn, chocolate, and sugar. I thought it was "mimicking" my gluten reaction, but now I'm thinking I have some problem unconnected to gluten intolerance that is worse when I have grains...any grains...as well as sugar/chocolate. 

I've seen a GP, a PA, an allergist, a neurologist, and a GI doctor. They've been no help at all. The earliest I can see the GI and neurologist again is early March. I even went ahead and made an appointment with a rheumotologist since my neurologist said that was where she'd send me after I did a nerve test with her (that she assured me would be turn out completely normal). I can't get into the rheumotologist until March either. I can't wait that long. I'm feeling so s$#& that I made an appointment for ANOTHER GP for next Tuesday because I'm that desperate. I don't know what to tell them either, except to say that I don't think it's gluten anymore, but all grains or perhaps carbs??? I doubt the doc is going to do anything but look over my ten pages of labwork, shrug, and tell me to wait and see what the specialists say. Maybe he'll throw in another lab test, just to make me feel better. 

I'm so damn sore and achy. It's been months. I've been seeing doctors for even longer than that. I'm just getting worse, and I can't keep going on like this. I can barely make it through the day at work.  

I'm 90% sure this crap is connected with my diet, but I don't know what to eat to rid myself of symptoms so I can do food challenges. I think milk made my joint pain worse, too. I know I'm more lactose intolerant than I used to be. I hadn't had any months, but I tried to add it back in as well because it was never that big of a problem, and I needed the calories since I had to restrict so many veggies/fruit. Besides, it was low oxalate. 

So...what am I supposed to eat? What won't make me worse? I've lost too much weight since July not to eat plenty of food, so I can do some majorly restrictive diet. I'm down from 150 to 118 pounds! I'm usually in the 130-135 range. I need to gain some of that back. Do I just give up trying to figure s$#& out for a while and eat "normally" and put on weight (and damn the consequences)? How can I do that when I have to function at work?

I mean...what the heck is my problem? Is it high blood sugar? I was tested for diabetes first thing (back in July). My fasting blood sugar was normal, I'm not even prediabetic. I ate nothing but veggies, meat, and fruit for three months with nothing processed and everything cooked from scratch. How could my blood sugar be problematic with that diet? 

Is it carbs? The only starch I ate for months was sweet potatoes! Not even bananas. Not even a grain of sugar or fake sugar passed my lips.

My thyroid blood tests (TSH and T4)  were within range too. Ana test came back negative, so I don't have lupus. I do not have any inflammation (from my sed rate), so arthritis is out. My joints are not red, swollen, or misshapen. I don't have any "tender points" so I'm not fibro. I'm not sleeping all the time, so I don't have chronic fatigue. In fact, I'm only getting like 4-5 hours of sleep most nights. I don't have chron's disease or polymyositis either, those were ruled out. I don't think I've ever been bit by a tick, so Lyme is unlikely. I thought perhaps salicylates might be a problem, but the rice shouldn't have been a problem on a low-sal diet either, not like that. If it were salicylate intolerance, I'd have that numbness way more often with lots of different foods.

So...seriously, does anyone have any ideas??? I'm all out!  

[Vanby]

Get rid of soy too. I was so achy and it was so crippling. Then when I was diagnosed with Celiac I went gluten free. Now I am Gluten free, soy free, diary free, and no grains. It took about a month and a half for my body to clear everything but I am finally feeling normal. It is not crippling in EVERY joint like it was before.

[GAJulie]

So sorry for your problems and frustration. Check out Facebook groups "Gluten Free Planet" and "Celiac Disease Support Group" (I think, or something like that). They may be able to give you some help. Maybe see a naturopathic Doctor or a nutritionist? 

[Ender]

Thanks Vanby and GAJulie for replying to my massively frustrated pity party from last night.  

Right before bed, I found something called the two week test to help diagnose carbohydrate intolerance. You basically cut out all grains, FRUIT, sugar, milk, potatoes, sweet potatoes, corn, legumes, etc for two weeks. Then you start experimenting to see what level of carbohydrates you can handle.

I've never tried to cut out all fruit before (in addition to everything else I cut out), so perhaps this is the direction I should go. I'm going to try it for two weeks in any case. Hopefully, the joint pain, muscle soreness, etc. will go away. Plus, I can have cheese and nuts on this diet. I haven't had either in over three months, so that will be...well, not nice...I suppose it's just better than nothing.

Vanby: I haven't had soy in over three months, so it's not soy. I'm glad you're feeling better.  

GAJulie: Good suggestion. I might go the naturopathic/nutritionist route if this doesn't pan out and appointments yield no answers. I'm tired of giving them my hard-earned money and getting no help in return.

[Irene Joanne]

I know you said you had thyroid blood work done, but did you get your thyroid antibodies checked? I've spent the last year feeling like you- so sore everywhere. I just found out in November I have celiac, but I also had high TPO (thyroid antibodies) levels, although my other thyroid blood work was still within range. I wonder if high thyroid antibodies can cause any of our symptoms. My symptoms got a lot worse last spring after a cortisone shot for seasonal allergies and a small surgery I had. 

[manasota]

Ender,

I just want to say that I COMPLETELY understand your situation!  I have no tips for you.  Just letting you know that it is NOT just you having these issues.

[Ender]

21 hours ago, Irene Joanne said:

I know you said you had thyroid blood work done, but did you get your thyroid antibodies checked? I've spent the last year feeling like you- so sore everywhere. I just found out in November I have celiac, but I also had high TPO (thyroid antibodies) levels, although my other thyroid blood work was still within range. I wonder if high thyroid antibodies can cause any of our symptoms. My symptoms got a lot worse last spring after a cortisone shot for seasonal allergies and a small surgery I had. 

No, I didn't even know that was a thing. I asked for a full thyroid panel from my doctor a couple of months ago, but my PA refused to order the full one. She just ordered the same two tests my previous doctor did. 

I haven't put my foot down about possible thyroid issues because my symptoms do not seem to match either hyperthyroid or hypothyroid. I have a mix of symptoms from both, and I don't think that's possible with thyroid issues. I mean, how I feel matches with hypothyroid, but I'm not sleeping well, I'm losing tons of weight, my period is light rather than heavy, and my cholesterol is low. As far as hyperthyroid, I'm not hungrier than normal, my heart beat isn't any faster, and my blood pressure is much lower (90/60), 

20 hours ago, manasota said:

Ender,

I just want to say that I COMPLETELY understand your situation!  I have no tips for you.  Just letting you know that it is NOT just you having these issues.

Thank you. Supportive messages are always appreciated, and as much as I don't want anyone else to feel like this, it does feel nice to know I'm not alone. 

[Ender]

First day of the carbohydrate intolerance diet did not go well. I'm very sore, and my joints ache. I'm cutting out the cheese, sour cream, and nuts that supposedly are a-okay on this diet, and I'll see how I feel tomorrow.

[Skiangel]

My experience prettying muh mirrors yours. After 12 specialists/doctors, I was about to give up. I went and saw a natural path, and he asked if anyone had tested my iron or ferritin. I said I assumed so because over the past 15 months they did a crazy about of blood work.  He ordered the lab, and the results shocked me. My ferritin level was a 6.  I had severe iron difficiency. The regular doctors never tested that because my hemoglobin is normal. Reg docs only test iron and ferritin when you hemoglobin comes back abnormal.  Within 3 weeks on iron, the pain drastically decreased, as did the numbing in my hands, headaches and shortness of breath.  15 weeks into taking iron and eating more food with iron, the ferritin is up to a 26. My doctor said it needs to get up to between 70-120 before my symptoms are gone. I have had one flare up since starting iron of the arm and leg pain coming back. I would say find a naturopath and ask to get your iron and ferritin tested.  Best of luck to you.

[Ender]

Interesting. My ferritin  was in the 30s way back in July even though I eat a ton of meat. How did you find your doctor?

[Skiangel]

I just looked up naturalpaths in my area. They said anything below 50 is too low.  Regular doctors were disagree with that.  Again he wants my ferritin to be above 70.  I have ton a ton of reason on this and am shocked to see how many people with lower ferritin feels like us. 

[icelandgirl]

Hi Ender... ((((hugs))))

I hear your frustration,  I do.  I think full thyroid testing is necessary.   A lot of people with celiac have Hashimotos too.  When you have Hashis  you can swing between hypo and hyper and it's awful.  I've experienced it.   Request the addition of Free T3, TPOAB and TgAb  tests.  Your TSH should be very close to 1...just being in range is not enough.  If mine gets to 2, I feel awful, but it's within the range.   Your free T3 and Free T4 should be 50-75% of the range, not just within it.

Also, Vitamin D...have you had that tested?  I've been supplementing for a year and a half and still not within an optimal range,  but improving.  Low Vitamin D can cause lots of issues, including pain.

Ferritin...another one to look at.  Mine was low as well and I've gotten it up some.  The range for this  is huge and, once again, just because you're within the range, doesn't mean you're in a good spot.

When you see the new GP, request these tests and make sure that you convey how miserable you are as well.

I wish you well.  Below is some reading on thyroid symptoms and optimal lab values.

Open Original Shared Link

Open Original Shared Link

 

[canadianjem]

I also went through the exact same as you. including the insomnia.

I was CERTAIN that I had RA.  Turns out, nope.  

I went through all the testing you did...nothing showed up at all.

I also lost a but load of weight. Was 135 pounds and got down to 105 pounds at 5'4".

Now i am back to 120 pounds, but it took a lot of effort.

I went to a naturopath. I now take a supplement called "true hope".  it is a vitamin that was designed to help with anxiety and depressions issues.  I started taking 1 a day ( bottle says to take 4) in addition to extra vitamin D to help in the uptake of calcium.

Then off i went to a nutritionist to make sure I was getting enough of all the nutrients i needed.  She came up with an amazing diet plan for me that I love.

I also went to a trainer at my gym. I an now on a weight lifting program to help strengthen muscles around all joints.

I HAVE to have a wind down/bedtime routine every night but i get an amazing sleep.

It was a long slow process but i am also back to 100% 

[Irene Joanne]

On January 31, 2016 at 6:11 AM, Ender said:

No, I didn't even know that was a thing. I asked for a full thyroid panel from my doctor a couple of months ago, but my PA refused to order the full one. She just ordered the same two tests my previous doctor did. 

I haven't put my foot down about possible thyroid issues because my symptoms do not seem to match either hyperthyroid or hypothyroid. I have a mix of symptoms from both, and I don't think that's possible with thyroid issues. I mean, how I feel matches with hypothyroid, but I'm not sleeping well, I'm losing tons of weight, my period is light rather than heavy, and my cholesterol is low. As far as hyperthyroid, I'm not hungrier than normal, my heart beat isn't any faster, and my blood pressure is much lower (90/60), 

Thank you. Supportive messages are always appreciated, and as much as I don't want anyone else to feel like this, it does feel nice to know I'm not alone. 

It's not impossible to swing back and forth from hypo to hyper when it comes to auntoimmune thyroid disease

[Irene Joanne]

1 hour ago, canadianjem said:

I also went through the exact same as you. including the insomnia.

I was CERTAIN that I had RA.  Turns out, nope.  

I went through all the testing you did...nothing showed up at all.

I also lost a but load of weight. Was 135 pounds and got down to 105 pounds at 5'4".

Now i am back to 120 pounds, but it took a lot of effort.

I went to a naturopath. I now take a supplement called "true hope".  it is a vitamin that was designed to help with anxiety and depressions issues.  I started taking 1 a day ( bottle says to take 4) in addition to extra vitamin D to help in the uptake of calcium.

Then off i went to a nutritionist to make sure I was getting enough of all the nutrients i needed.  She came up with an amazing diet plan for me that I love.

I also went to a trainer at my gym. I an now on a weight lifting program to help strengthen muscles around all joints.

I HAVE to have a wind down/bedtime routine every night but i get an amazing sleep.

It was a long slow process but i am also back to 100% 

I used to take the true hope vitamins too- are they gluten free? They did work well for me- but b vitamins in any form seem to give me really bad anxiety.

[canadianjem]

2 hours ago, Irene Joanne said:

I used to take the true hope vitamins too- are they gluten free? They did work well for me- but b vitamins in any form seem to give me really bad anxiety.

Yes they are gluten free. 

[Ender]

Well that was a giant waste of time. I paid a $30 copay just to have the doctor tell me to take Aleve and wait for my specialist appointments.  Yeah, that's a great idea doc. My stomach is probably f$#%ed up in some way, but I should fan the flames of that fire and screw it up some more.

*headdesk headdesk headdesk*

He didn't do any blood work, not to check for any deficiencies I might have or for another thyroid panel (a FULL panel this time). I asked him specifically about my thyroid and he insisted I didn't have a thyroid problem. I don't have any sort of blood sugar problem either according to him.

Oh, but my symptoms are "very interesting."

Whatever. 

I sent an email to a holistic doctor (board certified in family practice though) asking about a new appointment. He works only a few blocks away from me. I really don't have any confidence in any of the doctors I'm seeing next month, and I'm tired of waiting to be shrugged at and sent somewhere else. Depending on the price, I might try it out (my insurance won't cover it I don't think).

[flutegal64]

I wouldn't eat anything by Quaker.  I'd get rid of the Quaker rice cakes.  Those big brands often has cross contamination issues.  I stick with exclusive gluten free facilities.
The Doctor situation is ridiculous... having to wait that long seems like the normal thing even if you are having excruciating pains.

[icelandgirl]

I'm so sorry for your experience and frustration...I've been there.   I've walked out after a Dr's appointment and sat in my car and just cried out of frustration.

If you're in the US, you can order your own lab tests...here is some info on that:

Open Original Shared Link

Also, info on the optimal valued for the tests:

Open Original Shared Link

Have you had thyroid, vitamin D or iron done recently?   If so, you could look at the see and see if your values ae anywhere near optimal.

I hope you get some answers.