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Gi Says Muscle And Joint Pain Has Nothing To Do With Celiac..
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I talked to the GI about muscle and joint pain. She said it has nothing to do with celiac. I also brought up brain fog, she just started laughing and said she has never heard of it. Makes me wonder how good of a doctor she really is.

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I have huge issues with my joints, muscles and brain fog. I kept going to my doctor and was told nothing was wrong with me. I've been gluten free for over two years, and I never cheat. I ended up getting all my vitamins checked and the doctor still said that they were a-okay. I was feeling terrible, and was wondering if I needed to go on medical leave. Anyway, I brought the test results into my ND. My iron was borderline, my B-12 was in the lower part of the normal range, and my folic acid was off the charts. Normal? So she put me on vitamins, gave me a number of b-12 shots and gave me something to calm the nerves, and something to help me sleep. Apparently when you are anemic, it affects the quality of your sleep. As soon as I get the B-12 shot, my brain fog vanishes.

Currently I'm on ribes, rosemarinus, lingonberry, griffonia (for sleep), Talia (for nerves when I need it) and B-12, folic acid and iron pills. I am FINALLY starting to feel better. It does cost a lot of money right now, but if I didn't do it I wouldn't be able to work.

Your doctor sounds like they need to be coached on the many symptoms of celiac because their focus is strictly focused on the gut.

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I talked to the GI about muscle and joint pain. She said it has nothing to do with celiac. I also brought up brain fog, she just started laughing and said she has never heard of it. Makes me wonder how good of a doctor she really is.

I would start shopping for a new doctor immediately. This one knows nothing about celiac disease :blink: She certainly does not know that it can present with combinations of more than 300 different symptoms. And that one of them is joint and muscle pain - and another one is brain fog... I do hope you have other options under the Canadian system. Check with your local celiac (coeliac?) support group and see if they can recommend someone, because you will get no place with doctors lilke this.

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Mushroom is right--try to get another doctor! Muscle and joint pain are my worst symptoms and have been for my entire life. A physical therapist and an orthopedist both freaked out when they first felt my muscles--they both said they were the tightest muscles, ligaments, and tendons they'd ever felt in their careers. The orthopedist actually asked me what kind of muscular dystrophy I had. Geez....no type of MD--just celiac. Whenever I get glutened, my muscles and tendons become even more rigid, and my joints feel as though they're crippled with arthritis for about five days. Actually, I feel like an old woman when I accidentally get glutened.

It's only been somewhat recently that doctors have become aware of the involvement of the musculoskeletal system in people with celiac, as well as the neurological problems (including brain fog), so perhaps your doctor is unaware of the most recent research. No excuse, though--she needs to get up to date on celiac.

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Your doctor is ill informed as the others have pointed out. The muscle and joint pain are from the inflammation. It can be very severe especially prediagnosis. So many doctors don't look past their own specialties. In this doctors case the gut. If you can't switch doctors try to educate this one perhaps with some peer reviewed articles.

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Dump this Doc or educate her!

SEVERE muscle, joint, bone pain hit me so hard pre-DX, it was suggested I get a scooter to get around. I could not sit, stand, walk or lie down without severe pain. BURNING nerve pain, too ---I was in AGONY! I am in PT and MT 2X a week to regain my lost muscle mass. I have a long rehab ahead of me, but my NEW celiac-savvy GI and I remain optimistic.

INFLAMMATION causes all that pain.

Neurological symptoms are also most definitely celiac-related. I had "Gluten head" so bad, I had trouble articulating, comprehending new information, multi-tasking, recalling info and had to stop driving my car. :blink:

There's more, but you get the picture.

This doc needs to read a current medical journal once and a while.

<_<

If you want to read some pub med articles about the various associated conditions with celiac, here is a start:

http://sites.google.com/site/jccglutenfree/

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Like they said, you need a new GI. A doctor who laughs at you is not a doctor you want. That said, if there is any chance of educating this doctor a bit better, that could go a long way to sparing other people her ignorance.

If you decide to go to another doctor I'd write a letter outlining your reasons for firing her.

If you decide to try and keep seeing her (and when you meet your next doctor), you might want to follow the tips on my article "Making the Most of Your Doctor Visit" on the blog linked from my profile.

There's a lot more specific information in the article, but the main thing has to do with being very prepared for a visit. The most important thing I do when going to the doctor is write a report detailing symptoms, requested testing, and concerns. I break down how to organize it and what to include in the blog post.

Then during the discussion I have with the doctor, it helps me stay on topic and be taken more seriously. I always phrase my requests and ideas about what could be the underlying problem as respectful questions. If I find myself getting brushed off or contradicted, I ask for research/references. If research I've done is being discounted, I show it to the doctor and ask for them to review it and explain to me (with documentation) how it is wrong.

Remember to get a copy of your charts and all labs done, too. That's really important. The doctors often make notes that would surprise you. Also, you are the one who has time to actually look at your whole chart and try to make sense of the history. Most doctors don't have time for more than a cursory glace. Being able to call documented patterns to your doctor's attention can make a big difference.

Finally, if you end up with another doctor who does diagnose you and help you feel well, it's worthwhile to go back or send a letter detailing the true cause of your problems. I recently did this with my son's allergist. She was actually very receptive to the good news, and was a bit more informed about gluten than last year and definitely more interested in hearing about it.

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I had muscle weakness, joint and bone pain and severe brain fog...to the point of being unable to complete sentences. It was all related to wheat. It all disappeared when I got rid of gluten. I had 25 Dr.'s in 8 years and none of them saw a red flag or diagnosed me. Among them were Rheumatologists, Dermatologists, Psychiatrists, Internists, General Practitioners, and a Pain Speicalist. Not one mention that any of these symptoms could be related or have a cause. Celiac. I don't doubt that there are millions of Dr.'s do not know about Celiac. I was "diagnosed" with Fibromyalgia.....but it wasn't. And if I'd listened to the Dr.'s...well, they said Fibromyaligia doesn't get better and I would just have to live with it. Thank God for Scott starting this site because I would never have been diagnosed without this site. Gluten free one year. No joint pain, bone pain or muscle weakness and no brain fog. Just some lingering DH lesions. But well into healing. You don't need that Dr.

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Get yourself a new GI, she obviously has NO idea about Celiac. THose are very well peer reviewed symptoms.

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My GI asked me if I had any of those symptoms and about 20 more and then he asked if I had anything more to add to the list. So there are informed docs out there, I think if you go back to your regular doc they can refer you to someone else. I would not waste any more time or energy with that one.

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...

Remember to get a copy of your charts and all labs done, too. That's really important. The doctors often make notes that would surprise you...

holy geez is that ever true! When I moved from North Carolina back to Ontario, I got a copy of my chart from my GI, and some of the crap that was in there was not even true! She noted in my chart from my first appointment that we had "discussed other options, such as MRI, and CT scan to diagnose Celiac and patient requested endoscopy" Bald faced LIE! For one, the frackin' GI doctor never spoke to me herself AT ALL! For the first 3 appointments in her office, I only ever saw the PA! There was so much more in my chart that made me oh so angry with her, but I didn't even read it until long after I had moved already, so I didn't have opportunity to throw it in her face. She was an arrogant bitch, but the only GI in the area that accepted my insurance I was on, so I didn't have much choice. But geez, she sure didn't help me trust doctors of any sort any better, I'll tell you that!

She also really didn't have a clue about how to tell patients to follow a gluten free diet, so I had the Celiac Association send her an information package. Luckily I already knew what I was doing, but I seriously felt bad for any other Celiac patients she may have had in town!

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holy geez is that ever true! When I moved from North Carolina back to Ontario, I got a copy of my chart from my GI, and some of the crap that was in there was not even true! She noted in my chart from my first appointment that we had "discussed other options, such as MRI, and CT scan to diagnose Celiac and patient requested endoscopy" Bald faced LIE! For one, the frackin' GI doctor never spoke to me herself AT ALL! For the first 3 appointments in her office, I only ever saw the PA! There was so much more in my chart that made me oh so angry with her, but I didn't even read it until long after I had moved already, so I didn't have opportunity to throw it in her face. She was an arrogant bitch, but the only GI in the area that accepted my insurance I was on, so I didn't have much choice. But geez, she sure didn't help me trust doctors of any sort any better, I'll tell you that!

She also really didn't have a clue about how to tell patients to follow a gluten free diet, so I had the Celiac Association send her an information package. Luckily I already knew what I was doing, but I seriously felt bad for any other Celiac patients she may have had in town!

Infuriating! One thing I've taken to doing is having things added to my chart. If there are inaccuracies like that, you can submit notes to your chart. This is important because future doctors get copies of your old chart and will assume the things they find in there are accurate.

I also now have started writing reports for the doctor before my visit and make sure it gets added to my chart. When discussing it I am careful to ask questions and show a lot of respect so the doctor gives me the best care. Here is how I write the report (excerpt of an article, sorry about the messed up formatting, copy paste is like that):

Before a doctor visit, I think carefully about what I want the doctor to help me with, then I set it down in writing, in a clear format. This report helps me stay on topic during the visit, and helps me make sure I remember to bring up all of my concerns. I take one copy for myself and one for the doctor, so we can each take notes during the visit, and I make sure the doctor

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Infuriating! One thing I've taken to doing is having things added to my chart. If there are inaccuracies like that, you can submit notes to your chart. This is important because future doctors get copies of your old chart and will assume the things they find in there are accurate.

I also now have started writing reports for the doctor before my visit and make sure it gets added to my chart. When discussing it I am careful to ask questions and show a lot of respect so the doctor gives me the best care. Here is how I write the report (excerpt of an article, sorry about the messed up formatting, copy paste is like that):

Before a doctor visit, I think carefully about what I want the doctor to help me with, then I set it down in writing, in a clear format. This report helps me stay on topic during the visit, and helps me make sure I remember to bring up all of my concerns. I take one copy for myself and one for the doctor, so we can each take notes during the visit, and I make sure the doctor

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I am with Domestic Activist on this.

I keep everything about my health in a file on the laptop--saved to disk.

My health history, my family health history, current supplements/vitamins and copies of every single lab test, reports, MRI scans, DEXA scans, mammogram reports, post-surgical reports and PT reports.

Everything.

When I go to the doc, new or established, I print a copy of whatever they need and bring it with me.

I bring a list of questions and I do not leave until they are answered.

I HAND my test copies or health history to the doctor. I make sure she/he sees it and I ask to go over any test results TOGETHER.

I learned all this the hard way. I will never be neglected by a doctor again.

My new GI doc likes it this way and we talk about my care TOGETHER. I bring him articles which he copies for his patients. We work on my health care together---as it should be. And he asked me to come with him to speak to celiac support groups when I am ready. He wants me to tell them my story and to suggest ways they can be their own best advocates too.

This is what a good doctor is like. :)

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Glad to help, silk. There are other tips, too... scheduling the appointment at the right time is really helpful. First thing in the morning or right after lunch can make for a more relaxed appointment since they're not running late yet. Going when symptoms are at their worst helps, and if you have a family, scheduling everyone with the same doctor within a a couple days can make a big difference in their understanding of the whole picture.

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Glad to help, silk. There are other tips, too... scheduling the appointment at the right time is really helpful. First thing in the morning or right after lunch can make for a more relaxed appointment since they're not running late yet. Going when symptoms are at their worst helps, and if you have a family, scheduling everyone with the same doctor within a a couple days can make a big difference in their understanding of the whole picture.

I always try to get the first appt. too. :)

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I always try to get the first appt. too. :)

All very excellent advice. Wouldn't it be great to write a 'best of' book for newbies?

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Our medical office lets you book double appointments if you have something long and involved to discuss or if you just want extra time. It is much better than having two separate appointments. :)

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All very excellent advice. Wouldn't it be great to write a 'best of' book for newbies?

In a way, we ARE right on here!! :) Look how much valuable info is right here for "free" from the people who live it each day.

Many books have been written-- like Danna Korn's and Jules Shephard's books --that are very helpful to newbies.

But I fully intend to write a book someday--my doctor and my family have urged me to do it--from the perspective of what happens to the body (because mine broke down every which way :blink: ) and recovery is an interesting journey, to say the least.

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All very excellent advice. Wouldn't it be great to write a 'best of' book for newbies?

I've been meaning to write a book someday. Several of us on here talked about collaborating on a book to help friends and family understand cross-contamination, but it never took off. I'm hoping that when I have enough articles on my blog I can eventually pick out ones on various topics, update them, and turn them into books.

I don't think it would be ok to take posts from here and make them into something separate to sell, the copyright issues would be all over the place. But if people want to collaborate on a book I'm all for it and would love to be a part of it!

My son wanted to write a book for kids about what it's like to do the GAPS diet but we haven't gotten around to that yet, either, but I know it would be really cool. He was so frustrated when I got books about being gluten-free but they didn't reflect his experience since he was allergic to corn, too.

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I've been meaning to write a book someday. Several of us on here talked about collaborating on a book to help friends and family understand cross-contamination, but it never took off. I'm hoping that when I have enough articles on my blog I can eventually pick out ones on various topics, update them, and turn them into books.

I don't think it would be ok to take posts from here and make them into something separate to sell, the copyright issues would be all over the place. But if people want to collaborate on a book I'm all for it and would love to be a part of it!

My son wanted to write a book for kids about what it's like to do the GAPS diet but we haven't gotten around to that yet, either, but I know it would be really cool. He was so frustrated when I got books about being gluten-free but they didn't reflect his experience since he was allergic to corn, too.

I always thought that a C.com cookbook would be a great idea. But, that's up to the Boss. :D

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Well, I'll tell you, whatever any doctor says, you have to go by how you feel.

Before going gluten-free, I had all kinds of knee pain. I didn't think anything of it, because I've had several knee injuries and I thought it was just something I would have to deal with in my life. I was to the point where I had to hold onto the stair railing and lean on it and hobble down the stairs, but I thought it was just something I had to live with. I didn't want knee surgery!

Upon going gluten-free, this pain very suddenly disappeared. Now I can skip up and down the stairs like nothing, it's been months now but I'm still absolutely amazed every time I walk up and down the stairs. It's like night and day.

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It is quite frightening how often these doctors get it wrong, I had one tell me I could try re-introducing gluten after awhile because I would build a tolerance back up! Unbelievable!!

I would definitely try and educate this doc if you can. My muscle and joint pain is one of my worst symptoms and the only one that hasn't really improved at all yet (though it is very early days for me still).

Also I just received some information from the Australian Coeliac Society (who list bone and joint pain as a symptom btw) that recommends that newly diagnosed patients get a bone density test done. Do many people do this? It seems like a good idea though not surprisingly none of my doctors have suggested this...

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I asked for a DEXA scan for bone density when I found my Vitamin D was low. (It was all good, thank goodness :) )

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This may be long, but trust me when you find the right Dr you're life will change.

You need a NEW Dr. Sounds like she has no clue.

After 3 years with my GI and finally being diagnosed I switched GI's, first she was a be-itch, second "you have Celiac go on a gluten-free diet". I went to my GP the next day and she is more educated then my GI, put me on vitamins, probiotics, aloe, fish oil, extra D3. The new GI asked me about bone density test, which was done last year he said have it every year now. Both Dr's ask me where I shop and each suggest new markets, restaurants and bakery's.

To address your inflammation, joint pain, muscle pain, skeletal problems and brain fog. I suffer from multiple severe back problems and @ this point I'm avoiding surgery any way I can. I've had 7 epidurals in 18 months, trigger point injections, physical therapy, wear daily Lidoderm patches, at home tense and heat with exercise every night, and use pain medication rarely (makes brain fog worst). I can't take anti-inflammatory or muscle relaxers due to other health issues.

I was @ the Neuro Dr 3 weeks ago and he went over my history (very through)"last time you were here you were on Nexium and have stomach issues" oh I have Celiac, then he proceeds- are you blood and biopsy confirm, get me copies of your recent blood work, who's your GI, how are you feeling, what are you eating, etc questions. He said @ this point he is not concerned that I have Neuropathy, but will be watching me closely.

Two weeks ago I had a 3 day I.V.fusion treatment of 1 gram methylprednisolone, my Neuro Dr. contacted my GI to make sure it was OK to use this treatment. Did it help my back NO, are my knees and hand inflammation any better yes. Would I do the treatment again no, messed me up bad in many ways. I will probably have another epidural in the next few weeks.

I have suffered with back problems for half my life and they have gotten so much worst in the last 3 years when all my stomach problems started. Trust your gut (not in our case) trust your heart find a NEW Dr., you feel comfortable with who will answer your questions and confer with your other Dr's. Like I said before my GP was more educated with Celiac and offered more then my original GI.

I hope you find a good Dr. that works for you.

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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
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