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Joint/muscle Pain

dancingmama

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dancingmama Newbie
dancingmama
Posted

For the past several weeks I have been suffering from vague, yet frustrating symptoms that came on quite suddenly after a stressful time. Anxiety (health anxiety specifically), TERRIBLE brain fog, and muscle/joint pain that migrates around my body as well as muscle twitching all over my body. In addition to that I've had headaches (they are often ice pick headaches) and nerve pain in my neck...I see a chiro in a few days and figure this probably isn't related to everything else.  I've also been losing weight, however I attributed that to dietary changes. Looking back, the weight fell off pretty quickly and now that I'm no longer eating as clean (heck, I've even eaten junk food) I've maintained my weight. My bowel movements haven't been diarrhea but they are more urgent than they used to be and "loose".

My question: if any of you have experienced joint or muscle pain with celiac disease, what was it like? This pain moves all over. It might be in my elbow for several seconds, maybe up to a minute and then it goes away. Then I might have pain in my calf an hour later. The pain never lasts very long and moves all over, on both sides of my body. Some days I have very little pain, others it is very frequent.  

I also have type I diabetes, Hashimoto's and Graves' disease (currently hashi's is in remission? Still wrapping my head around having both conditions). My thyroid doc did a blood panel and testing for inflammation and those tests came back good. aside from low hemoglobin which I have had for years. At this point I would actually be happy/relieved to have a celiac diagnosis because then at least I could know what is wrong with me! I see a psychiatrist in 3 weeks for the anxiety and have an appointment at the end of July with a rheumatologist for the joint/muscle pain. Going to call on monday to try to get into a doctor about testing for celiac but I wouldn't be surprised if I have to wait 2-4 months for the appointment :( Does it sounds like my symptoms could be from celiac? My thyroid doc( he is not an endo, but rather does imaging for thyroid diseases like the radio active iodine etc), is stumped. He is the only doctor that is even concerned as my GP is useless. Everyone around me keeps saying all of this is related to anxiety but I feel like it is something more. 


Edit: My thyroid levels are currently in the normal range, otherwise I would assume these symptoms are from them being off. I'm also no longer on any medication except novolog insulin...I went off my thyroid med because I was concerned my symptoms were side effects from that (with the ok of the thyroid doc of course)

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cristiana Veteran
cristiana
Posted

Hello and welcome to the forum.

 

I think, knowing what I now know about celiac disease, I would probably go for the testing.  Some of your symptoms sound rather like mine.  I had anxiety, brain fog, joint pain (althought mainly around the sacrolilac joint) muscle twitching (and for me eye twitching) and headaches of all varieties.  

 

I also had had what I called 'a nervous stomach' for years.   All of this is quite non-specific, in fact, I don't think I would have ever been tested for celiac disease until, finally, I developped 'classic' gastro-symptoms' ie. diarrhea which endured for six weeks.  Here in the UK that is,as far as I understand, the point at which they start the tests rolling for celiac disease under the National Health Service system.  

 

About six months before the more obvious gastro symptoms started with a vengeance the eye twitching (and also tingling in extremities) really got going.   I thought it was the anxiety.  I had some blood tests then and they discovered I was anemic and had borderline levels of B12.   I now know those things were due to my celiac disease.  I think I must have been short of magnesium, too, but was not tested for this.  I wonder, could you arrange tests for those deficiencies as they might be causing some of your symptoms whilst you wait for your celiac test.   If you discover you are low in these, it might point to celiac disease too.

cyclinglady Grand Master
cyclinglady
Posted

Any medical doctor can order the tests for celiac disease. You do not have to wait for a GI to order them. Here is the list. Since you have Hashi's and Diabetes, I would ask for the complete list instead of just the screening one (TTG and total serum IGA are the common screening tests). If the entire panel was not ordered, my diagnosis would not have been caught. The anxiety can be linked to celiac disease, but also the thyroid. My symptoms often overlap between my autoimmune disorders! In any case, do not give up! It is not just "all in your head"!

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Welcome to the forum and let us know how it goes!

nvsmom Community Regular
nvsmom
Posted

Those with T1 diabetes, or with celiac disease in the family, are considered to be at high risk of developing celiac disease and are now being advised to get tested (every few years) even if they have no symptoms.  Since you have symptoms, I think it is a good idea to get tested.  There was an article posted about this recently: Open Original Shared Link

 

As Cyclinglady said, any doctor can order the tests, just make sure you get as many tests done as possible because the tests have sensitivities like 75%, or even lower in the older tests.  This report discusses the tests in more detail: Open Original Shared Link

 

Your anxiety and joint pain are both symptoms of celiac disease.  Unfortunately, they are some of the slower symptoms to improve so if you do go gluten-free after being tested, give the diet at LEAST 6 months before you judge it's effectiveness.  I had arthritis from autoimmune causes, which I believe was celiac disease.  My arthritis would appear with fatigue and hair loss; it was symmetrical and got bad quickly.  Unlike yours, my pains tended to settle into a spot for many days, or as long as a few month.  There (thankfully) was no swelling, heat, or permanent damage when those flare-ups happened.  It took close to a year before they really started going away. At three years gluten-free, I think I haven't had a strong AI related arthritis flare-up in close to a year (just some minor ones that last a few days).

 

I too have Hashi's.  I've never heard of thyroid meds causing pain, but hypothyroidism can.  In my case, I am pretty sure my pain was mostly celiac disease related.

 

Good luck with whatever you decide to do.  :)

dancingmama Newbie
dancingmama
Posted
  • Author

Thanks for all the feedback! I will ask my GP about doing testing through him, however I have a feeling he won't since he tends to just constantly refer me :( He wouldn't test my thyroid either. The wait is terrible! Especially because of the anxiety and brain fog :( I can deal with the pain and the loose stools but those symptoms make the anxiety worse...it's a terrible cycle :(

cyclinglady Grand Master
cyclinglady
Posted

Can you get a new GP? Any doctor who refuses to do a thyroid panel must feel they are not qualified to interpret the results. That is just my opinion, Geez Louise, he should be able to consult with other doctors in the office or an online doctor's forum (they are there on the Internet!).

dancingmama Newbie
dancingmama
Posted
  • Author

I would get a new GP but I'm kind of scared of switching doctors...I guess because I've seen so many over the years for various things, I know how some can be complete a** holes...my GP is a nice guy and will write me any prescription for my diabetes that I want. I guess that is what keeps me with him, even during times of frustration. I live in Germany so health care is a bit different here...I don't think this guy is going to log online for anything...he still uses paper records :S X ray of my neck came back ok today but doc says my muscles are very tense and that is probably the cause of the nerve pain/headaches. He said to see a neuro if the headaches persist to get an MRI so I've made an appt. with them for the end of May. 

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cyclinglady Grand Master
cyclinglady
Posted

I missed the low hemoglobin symptom you posted the first time. That was what triggered my GI to order my celiac tests. I already had a genetic anemia, but my low ferritin levels (iron stores) indicated celiac disease. Other doctors dismissed it as a result of heavy periods which I did not have......at least until that last year into menopause.

I think you are a strong candidate for celiac disease. Dang! The genes are the same for celiac and type 1 diabetes! Well, keep eating gluten, but ask the other doctors that you are seeing for a complete celiac blood panel. Celiac disease is most likely the source of all your problems!

dancingmama Newbie
dancingmama
Posted
  • Author

Thank you for your response. It's so tricky because a lot of these symptoms can go unnoticed. I just realized today I can't even remember the last time I had a solid bm...I haven't had bad diarrhoea but it's also not solid and it floats (sorry for tmi). Usually it's pretty urgent if I have to go.I have had diarrhea 1-2 days a month but I just blamed it on my period, even though I've never experienced it before. Then there is the fact that I had a baby last year...another trigger for autoimmune diseases AND life has been extremely stressful the last few months. None of my symptoms scream digestive problem though. Thankfully the gastro I'm seeing is one of the best in the country. He flies back to Europe to see patients in the summer and when in the states he is a researcher at Harvard for celiac disease. My husband saw him a couple years ago and was diagnosed with a gluten sensitivity. The wait is terrible but I hope it will be worth it. 

Celiacandme Apprentice
Celiacandme
Posted

Definitely sounds like it could possibly be celiac disease. I hope you can get your GP or one of your doctors to run the full celiac blood panel on you. Keep us posted. Don't stop eating gluten until you are tested. You know when something is wrong with your body. You might be anxious because of all that is going on but all of this is not caused by anxiety. Keep pushing for your answers and keep us posted!

dancingmama Newbie
dancingmama
Posted
  • Author

Thank you! I will definitely keep you posted. I'm thinking I will go off gluten, regardless what the tests say and see how that goes. I'm tempted to do that now but of course I want accurate test results. 

dancingmama Newbie
dancingmama
Posted
  • Author

Yes! Just got an email from my thyroid specialist that he will run the celiac panel on me!!! I just need a referral from my GP! He says he can do pretty much any blood test as the lab in his practice is quite sophisticated.  :D  Shouldn't be too hard to get the referral either. Hopefully I can get tested next week instead of July! Is it sad I have my fingers crossed that the results come back blaring positive for celiac?! Most people would be praying the opposite but I just want to know what is going on with me! My husband is already gluten sensitive so I don't eat a ton of gluten as it is, however I'm going to amp up my gluten consumption to make sure I can do my best to get accurate results. 

cyclinglady Grand Master
cyclinglady
Posted

Glad to hear!

Celiacandme Apprentice
Celiacandme
Posted

So glad he'll run the panel for you. I hope you can get in there fairly quickly to get it done. Good luck!

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