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Gi Says Muscle And Joint Pain Has Nothing To Do With Celiac..


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#1 Silencio

 
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Posted 23 December 2011 - 06:59 PM

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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#2 Yup

 
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Posted 23 December 2011 - 11:43 PM

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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#3 mushroom

 
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Posted 24 December 2011 - 01:03 AM

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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#4 rosetapper23

 
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Posted 24 December 2011 - 01:47 AM

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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#5 ravenwoodglass

 
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Posted 24 December 2011 - 03:41 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 IrishHeart

 
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Posted 24 December 2011 - 08:06 AM

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..../jccglutenfree/
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 domesticactivist

 
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Posted 24 December 2011 - 12:14 PM

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.
  • -2
Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#8 eatmeat4good

 
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Posted 24 December 2011 - 05:09 PM

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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#9 beebs

 
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Posted 24 December 2011 - 06:21 PM

Get yourself a new GI, she obviously has NO idea about Celiac. THose are very well peer reviewed symptoms.
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HLA DQ8, gluten-free since January 2011

#10 red island

 
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Posted 26 December 2011 - 06:49 PM

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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#11 Reba32

 
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Posted 28 December 2011 - 09:54 AM

...
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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#12 domesticactivist

 
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Posted 28 December 2011 - 10:41 AM

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 doctors copy becomes part of my medical record.

Full Name, Date of Birth, Patient ID Number, Date of Visit This identifying information will make it easy for the office to file my report in my chart.
Concerns Lead with a question in bold, then the following sections for each:
Symptoms This is a clear list of all the symptoms you think may be related to this concern. Writing them out is very important so that you dont forget to give the doctor any of the relevant information. This can also help with embarrassing symptoms. It can be easier to write it than say it!
Research Give a short summary of the research you have done into possible causes of the problem or testing. Cite sources, which can range from scientific papers to my friend thought it might be
Testing Requested If you have labs or other tests which you would like performed, list them here.
Notes I like to include some family history information here. Most doctors dont see whole families any more, and even if they do, they dont see you all at once. If there are related issues for other family members, definitely include them here. If there are seemingly unrelated health issues going on you may want to include those as well, since your doctor may see a connection you have missed. If you take any medications or have allergies you will want to list that here. Make sure you note the details of your special diet, too!
Extras If you have symptoms that are worse at night or come and go, get some documentation of them. Videos of stiff joints, pictures of rashes, food/symptom journals these kinds of things will give your doctor more information to go on.

  • 0
Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#13 silk

 
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Posted 02 January 2012 - 08:53 AM

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 doctors copy becomes part of my medical record.

Full Name, Date of Birth, Patient ID Number, Date of Visit This identifying information will make it easy for the office to file my report in my chart.
Concerns Lead with a question in bold, then the following sections for each:
Symptoms This is a clear list of all the symptoms you think may be related to this concern. Writing them out is very important so that you dont forget to give the doctor any of the relevant information. This can also help with embarrassing symptoms. It can be easier to write it than say it!
Research Give a short summary of the research you have done into possible causes of the problem or testing. Cite sources, which can range from scientific papers to my friend thought it might be
Testing Requested If you have labs or other tests which you would like performed, list them here.
Notes I like to include some family history information here. Most doctors dont see whole families any more, and even if they do, they dont see you all at once. If there are related issues for other family members, definitely include them here. If there are seemingly unrelated health issues going on you may want to include those as well, since your doctor may see a connection you have missed. If you take any medications or have allergies you will want to list that here. Make sure you note the details of your special diet, too!
Extras If you have symptoms that are worse at night or come and go, get some documentation of them. Videos of stiff joints, pictures of rashes, food/symptom journals these kinds of things will give your doctor more information to go on.






This is REALLY excellent advice and I plan to use it from now on. As I am also a type 1 diabetic, I have a file I carry to the doctor with all of my labs over the past many years so that they can have a complete record of my history. I also have an updated list of all of my medications, including OTC's ready for them to copy. This saves a lot of time when filling out their forms because you can just have them attach a copy to the paperwork.

As for joint pain....I worked for a Chiropractor who was also my very good friend, when I was diagnosed. Over the several years that I worked for him post DX, we discovered that whenever I had a severe flare up with my right hip or low back, it was always preceded by a glutening. He was so convinced of this fact that when I go to see him now with a problem, he asks how recently I got zapped! You would think that for MD's who have been practicing for years, that they would realize that they are treating individual people, not just textbook cases from their medical journal. We are all different and all experience things to a different degree. The great thing about 'alternative' medicine, is that those professionals are willing to think outside of the box rather than sacrifice personal care on the alter of the MDA!
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#14 IrishHeart

 
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Posted 02 January 2012 - 12:12 PM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 domesticactivist

 
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Posted 02 January 2012 - 12:14 PM

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.
  • 1
Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.




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