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Celiac With/without Fibromyalgia (And Canker Sores Too!)


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#1 SueQueBlue

 
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Posted 12 October 2010 - 07:44 PM

I have been living gluten free for 3 months now after being dx'd with Celiac. Prior to the diagnosis, my primary care doctor was treating me for possible fibromyalgia with meds for the pain, muscle relaxers and sleep aids. I was really hoping that the change in my diet would "cure" the fibro, as alot of the Celiac symptoms are the same. I finally went back to my primary dr, because the increase in aches and pain, plus the lack of sleep has actually gotten worse. My stomach symptoms have gotten better.

I know that she is not an expert in Celiac, but she thought that the symptoms I have could still be Celiac related. Because it is an autoimmune disease, as your body is ridding itself of the antibodies, she thought that you could actually feel worse before you get better. Apparently this happens with people with Lyme Disease-as they take meds to help rid themselves of the disease they get worse.

Regardless, she gave me some new meds for the sleep and pain, and a referral to get some more PT. I am just curious if others had Fibro and had a similar experience or not. Any information would be helpful.


Also, I am having an increase with my canker sores-enough to warrant a prescription to get rid of them faster. I have always been prone to them, and then I learned they can be a symptom of Celiac. But instead of getting fewer, I am getting more. It seems like I always have one brewing.

I feel like I have been pretty good about avoiding gluten-but maybe I need to take a 2nd look.
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#2 Noni

 
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Posted 12 October 2010 - 08:58 PM


Hi,
It's reassuring to know that I'm not the only person that
suffers from canker sores related to celiac. It has taken
me a very long time to convince the doctor (my dermatologist)
that there was a connection between the two. I not only have
the Celiac Disease, but also have Dermatitis Herpatiformis.

Sorry that I can't answer any questions for you. I'm
new to this site and still seeking answers myself.
It's just when I read your post I just had to make a
reply. These forums are the only place I find anyone that
shares my symptoms & can relate to what I'm going through.
Good luck with your celiac. :)
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#3 mushroom

 
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Posted 12 October 2010 - 11:00 PM

Hello, and welcome to the forum.

As you are finding out, recovery from eating gluten is not an immediate thing, like turning off the faucet and the symptoms stop. You have done damage to your body and it is going to take it a while to heal, and everyone heals at their own rate, depending on the variables of 1. individuality, 2. amount of damage done, 3. other associated illnesses, 4. other food intolerances, and 5. sometimes just plain luck.

There is a goodly percentage of celiacs who actually go through a period of withdrawal from gluten, similar to that that smokers undergo, which will make you feel worse at first. Also, the muscle and joint pains tend to linger a while longer than some of the other symptoms. Sorry about the canker sores - I really don't know how long they can last :( Hopefully the meds your doc is giving you will help to ride these symptoms out.

But yes, it is still possible you could be getting hidden gluten. It depends a lot on whether you live in a gluten free household, whether you have discarded contaminated cooking utensils/equipment such as wooden and plastic ware, gluten contaminated toaster, colander, scratched nonstick cookware, and whether or not you have rid yourself of gluten in your personal care products and scrips and OTC meds. Also whether or not you are kissing a gluten-eating partner after he has consumed gluten - there are so many sources of possible contamination. All you can do is rid yourself of every conceivable source you can think of, like not eating out for a while, not eating foods processed in a facility that also processes gluten, getting really strict and see if that makes a difference for you. Try going to a strictly natural gluten free diet of meats, fish, fruits, vegetables, rice, seeds, nuts, and see if that helps. At this point, without knowing more, these are my best suggestions. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 SGWhiskers

 
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Posted 13 October 2010 - 05:09 AM

I too was diagnosed with fibro before I got my celiac diagnosis. It has been 2 years and my symptoms are slowly improving. I still struggle with it every day. My uneducated thought is that the celiac caused it, and going gluten-free helps it, but the fibro is part of me now and isn't going to dissappear. I found trigger point injection and trigger point manipulation did a lot for my pain levels. A rhumatologist I saw for a while recommended exclusively lean meats, leafy greens, and berries for his fibro and autoimmune patients. I gave it a 6 week trial, but it didn't seem to make a difference for me. For a friend it made all the difference in the world.
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#5 tarnalberry

 
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Posted 13 October 2010 - 07:39 AM

I developed fibromyalgia independently of celiac disease. For me, low iron stores (which came about LONG after going strictly gluten free) contributed to restless leg, which severely impacted the quality of my sleep. Combining that with psychological stress from my job, I developed fibro. Treating the RLS helped significantly, but, honestly, getting laid off was the best medicine. :/
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#6 lindalee

 
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Posted 13 October 2010 - 08:25 AM

EPSOM SALT BATHS UNTIL IT WENT AWAY IS WHAT WORKED FOR ME.

MAGNESIUM FOR THE SLEEPING AND RESTLESS LEG AND MUSCLE RELIEF.

MOUTH SORES --I believe Dr. Oz said peroxide---I do peroxide on my toothbrush every day to clean it and rinse w/ that and water so I haven't had those in a long time.

Hope this helps
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Lee

#7 quincy

 
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Posted 13 October 2010 - 08:37 AM

I have been living gluten free for 3 months now after being dx'd with Celiac. Prior to the diagnosis, my primary care doctor was treating me for possible fibromyalgia with meds for the pain, muscle relaxers and sleep aids. I was really hoping that the change in my diet would "cure" the fibro, as alot of the Celiac symptoms are the same. I finally went back to my primary dr, because the increase in aches and pain, plus the lack of sleep has actually gotten worse. My stomach symptoms have gotten better.

I know that she is not an expert in Celiac, but she thought that the symptoms I have could still be Celiac related. Because it is an autoimmune disease, as your body is ridding itself of the antibodies, she thought that you could actually feel worse before you get better. Apparently this happens with people with Lyme Disease-as they take meds to help rid themselves of the disease they get worse.

Regardless, she gave me some new meds for the sleep and pain, and a referral to get some more PT. I am just curious if others had Fibro and had a similar experience or not. Any information would be helpful.


Also, I am having an increase with my canker sores-enough to warrant a prescription to get rid of them faster. I have always been prone to them, and then I learned they can be a symptom of Celiac. But instead of getting fewer, I am getting more. It seems like I always have one brewing.

I feel like I have been pretty good about avoiding gluten-but maybe I need to take a 2nd look.


I suffered from canker sores for years.seems like every month I had a horrible one that needed to be burned with silver nitrate.
I have found great success with a brand of toothpaste that does not contain SLS (sodium Lauryl Sulfate) which has been shown to be an irritant. the canker sore formula toothpaste I use is expensive but it has been such a blessing to not suffer from them anymore. I started using the toothpaste long before I knew I had celiac by the way... so maybe check into what is in your toothpaste or mouthwash.
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#8 precious831

 
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Posted 14 October 2010 - 07:26 PM

I have been living gluten free for 3 months now after being dx'd with Celiac. Prior to the diagnosis, my primary care doctor was treating me for possible fibromyalgia with meds for the pain, muscle relaxers and sleep aids. I was really hoping that the change in my diet would "cure" the fibro, as alot of the Celiac symptoms are the same. I finally went back to my primary dr, because the increase in aches and pain, plus the lack of sleep has actually gotten worse. My stomach symptoms have gotten better.

I know that she is not an expert in Celiac, but she thought that the symptoms I have could still be Celiac related. Because it is an autoimmune disease, as your body is ridding itself of the antibodies, she thought that you could actually feel worse before you get better. Apparently this happens with people with Lyme Disease-as they take meds to help rid themselves of the disease they get worse.

Regardless, she gave me some new meds for the sleep and pain, and a referral to get some more PT. I am just curious if others had Fibro and had a similar experience or not. Any information would be helpful.


Also, I am having an increase with my canker sores-enough to warrant a prescription to get rid of them faster. I have always been prone to them, and then I learned they can be a symptom of Celiac. But instead of getting fewer, I am getting more. It seems like I always have one brewing.

I feel like I have been pretty good about avoiding gluten-but maybe I need to take a 2nd look.


Hi, I have celiac and I also have fibromylagia and actually also interstitial cystitis. Prior to being gluten-free(and grain-free) my symptoms were very bad. There was one episode of fibromyalgia where I had to quit working, I couldn't even get out of bed because of the pain. I had meds too, very strong ones and also pills for depression(I wasn't depressed) but my doctor said it would help me sleep. I took all those but nothing really helped until I went gluten-free. I have sores in my my mouth too when I get glutened. I have a lot of other symptoms typical to celiac, like the GI symptoms.

All I can say is that it took sometime for me to get better and even then I wasn't really completely better. I had to go grain-free and that's when I started to get better. It's a long story. Anyway, those are my thoughts, I hope it helps.

I'm not on any meds right now anymore.
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#9 Juliebove

 
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Posted 14 October 2010 - 11:15 PM

I do not have celiac but do have Fibromyalgia and at times can get canker sores. I tend to get the sores when I have a virus. Certain foods can make them worse for me. Namely walnuts and potato chips. I don't know why.

The Fibromyalgia is linked to my thyroid. I quit eating soy except for soy lecithin (mainly in vitamins) and soybean oil (mainly in restaurants) and my thyroid went back to normal. I am not totally free of the Fibromyalgia. I do have to pace myself. I can't do much. And if the pain starts, I have to stop, get a cool drink if I can, and take a rest. I also rescheduled my sleep time. I do much better if I go to bed around 3:00 a.m. I would personally probably stay up till 6:00 a.m., but I have a daughter to get off to school. So I have to get a few hours of sleep before she gets up. And I like to be up and dressed before she gets home.

So after she goes to school, I go back to bed till noon. I have to take a pill (Carafate) one hour before eating. So I get up, take the pill and go back to sleep until 1:00. Then I get up for the day.

While I am sure I would do better still if I didn't have the fractured sleeping, it's the best I can do at the moment. I try to avoid doing things like standing in long lines or doing much walking. Those things really increase the pain.
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#10 txplowgirl

 
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Posted 16 October 2010 - 08:35 AM

Hi Sue,
I have fibro and rhuematoid arthritis. It wasn't until I cut out soy, dairy, nightshades and aspertame that I finally started getting some relief from the pain and fatigue. The nightshades which are (potatoes, tomatoes, eggplant and all bell peppers. They have mild toxins in them and us with fibro and all forms of arthritis can't handle these toxins. They cause inflamation, or swelling in the joints, bone pain, and fatigue. Aspertame does almost the same thing.
My canker sores usually pop up when I have soy or aspertame. Sounds like you also going through withdrawals from the gluten. Just something to consider but check into adrenal fatigue.
Also might want to cut your dairy too, because in some of us it will cause a myriad of problems that you might be thinking the gluten is causing but isn't.
Anyway, just some ideas, hope you get to feeling better.
Vicky
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#11 Flor

 
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Posted 26 December 2010 - 10:36 AM

Hi all,

I haven't been here for a long time. But the canker sores post came up in my google search and now I'm back.

From what I've read, canker sores are also a symptom seen in adrenal fatigue. Which raises the question for me here about who knows anything about the relationship between adrenal fatigue, celiac, and CFS/FM?

I'm being tested for adrenal fatigue (saliva test, cortisol and other hormone levels throughout a day) among other things. My diagnosis for celiac is indeterminate b/c I was off gluten when I first went to the docs and was unwilling to go back to eating gluten for their tests. I am getting tested for the gene though.

It seems to me ALL these ailments, even celiac, are very stress-related, which is to say mediated through the HPA axis (hypothalamus, pituitary, adrenal axis) which is why I think many of the symptoms are similar: sore joints and muscles, fatigue, leaky gut, malabsorption, depression/anxiety, skin inflammation, multiple food sensitivities, etc.

While I've been gluten free for five years, the most dramatic round of gut healing I've experienced (near total elimination of all gut symptoms) happened when I stopped eating ALL grains, including rice, corn, and potatoes. I eat a modified paleo or GAPS diet now.

I think for people with celiac (or many people with celiac) the gluten reaction is only part of the story. So while my guts have largely healed, I now have a lot of symptoms of adrenal fatigue. I think it's part of the same process.

My guess is in time we will discover that so many of us who have or think we have celiac disease, that stopping eating gluten is only a small part of what needs to happen. And that another part has to do with supporting the adrenal glands and changing our lives so that we do not absorb and process stress in the old way.

I haven't kept up on the literature, but I'd be curious to know what portion of people diagnosed with celiac disease make a full recovery just by eliminating gluten from their diet. Anyone know?
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#12 txplowgirl

 
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Posted 26 December 2010 - 11:56 AM

Hi Flor, yes, I found out that I had adrenal fatigue. I have been taking something called Adrenal Xfactor and it has made a world of difference.
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#13 FooGirlsMom

 
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Posted 26 December 2010 - 03:25 PM

You might want to check out the website www.doctordavidclark.com and click on the info for fibromyalgia. There are 7 things that can make it worse. I have fibro symptoms too and I notice that when I follow what he states, the symptoms do get better.

Hope you feel better soon,

FooGirlsMom
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When I saw this photo, I thought it truly represented my life prior to being gluten-free. It was like being rooted in place trying to survive a Category 5. Now that I am gluten-free, I feel like I just might make it :)

#14 txplowgirl

 
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Posted 26 December 2010 - 04:06 PM

You might want to check out the website www.doctordavidclark.com and click on the info for fibromyalgia. There are 7 things that can make it worse. I have fibro symptoms too and I notice that when I follow what he states, the symptoms do get better.

Hope you feel better soon,

FooGirlsMom


Wow, Foogirlsmom, That was really interesting and informative, I just in the last couple of weeks kicked out the caffene. I had already kicked the other stuff out but I have been sweetening my decaf tea with agave nectar which he says to also avoid. Oh brother, now what kind of sweetner do I use? Aaarrrrrr!
  • 0

Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#15 mushroom

 
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Posted 26 December 2010 - 04:14 PM

Wow, Foogirlsmom, That was really interesting and informative, I just in the last couple of weeks kicked out the caffene. I had already kicked the other stuff out but I have been sweetening my decaf tea with agave nectar which he says to also avoid. Oh brother, now what kind of sweetner do I use? Aaarrrrrr!


Stevia??
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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