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Fibromyalgia?

IngridBeth

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IngridBeth Apprentice
IngridBeth
Posted

Okay, so I know many of us with the eventual Celiac diagnosis have previousy been diagnosed with Fibromyalgia. I got a diagnosis of FM in 2003 - and had it confirmed by several doctors (I think I was in a bit of denial as I didn't really believe it the first few times I heard it). My symptoms did improve over time but only after years of serious exhaustion, muscle weakness, pain, and the whole nine yards. Lyrica is the only medication that really has seemed to help, but my symptoms have still been bad enough that I couldn't work (I could not predict how I would feel on any given day, on bad days I literally could do nothing but lay down, and if I "overdid" it - like having a few active days in a row - it could take me a whole week to recover).

SO...a few weeks ago my doctor diagnosed "probable" Celiac and I went gluten free. I am seeing some pretty significant changes and although it's been up and down, I am really hopeful that I may eventually feel way better than I have in years. My question is, could the Fibromyalgia diagnosis have been wrong (or incomplete) in the first place, and the symptoms I had were really caused by Celiac? Obviously if that were true that would be great because it would mean that going gluten free would make it all go away... :rolleyes:

Has anyone else experienced FM getting better after going gluten free?

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mushroom Proficient
mushroom
Posted

Many diagnoses (or sometimes tentative diagnoses) are made which are later revised as more complete information becomes available. Sometimes a diagnosis is made just because a patient needs to have some idea of what is wrong with him. Sometimes the diagnosis is made because it seems to be the most likely diagnosis. My opinion is that the only ultimate diagnosis is an autopsy after the patient has died, and even then sometimes the cause of death is undetermined (perhaps I have been reading too many Patricia Cornwell novels :lol: ).

Anyway, all this is to say that a diagnosis is frequently revised as a disease process progresses or as new pieces of the puzzle fall into place. When you start working a jigsaw puzzle it may look like it is going to be a cat, but it turns out to be a rabbit. Many doctors will make a "working diagnosis" and then rule out other possibilities.

I was originally diagnosed with fibromyalgia - I had all the points, plus a whole lot of extra ones as well. I was next diagnosed with polymyalgia rheumatica, because that's what my dad had been diagnosed with (I don't think he had it either); this was later changed as the problem moved to new and unlikely areas to support that diagnosis, and I was told that I had sero-negative rheumatoid arthritis. Then I developed psoriasis, so the diagnosis was changed to psoiratic arthritis. Plus, I was never tested for or told this, but I have gluten intolerance/celiac disease too, based on my own diagnosis.

So yes, while there are people on this board who have been diagnosed with both fibromyalgia and celiac disease, it is certainly possible that the symptoms are manifestations of one and the same thing in, my opinion.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I was not diagnosed, but the doctors were trying to get me a diagnosis of fibromyalgia before I discovered the possibility of celiac disease. Everything you describe is exactly what my life was like before going gluten free. Some days I just could not get out of bed the pain and fatigue was just too much. I had to quit working and drop out of grad school it was so bad. This went on for at least three years with tons of testing and no diagnosis. It was only int he last few months of illness than I started to develop bad digestive symptoms. If I had never developed those digestive symptoms, I would not have looked to food as a cause. I think I would have continued to get worse and been diagnosed with fibro. Now, 7 months gluten free I am much better. I still have days where I just feel tired, especially if I do a lot of activity the day before, but I am able to do basic things like housework, doing the laundry and dishes, going to the store, etc. I regained the ability to drive which was huge (I had been restricted from driving by doctors orders at one point in my illness). I'm still not good at doing lots of exercise, but I try to walk to the store several times a week (a couple blocks). I feel like I am getting stronger slowly everyday. I have big setbacks though when I get accidentally glutened. Vitamins really help and I notice a huge loss of energy when I miss a day of vitamins.

Juliebove Rising Star
Juliebove
Posted

I do not have celiac but do have FM. For me it is very much linked to my thyroid. When my thyroid is out of whack, the symptoms are much worse.

jilliebear Newbie
jilliebear
Posted

Okay, so I know many of us with the eventual Celiac diagnosis have previousy been diagnosed with Fibromyalgia. I got a diagnosis of FM in 2003 - and had it confirmed by several doctors (I think I was in a bit of denial as I didn't really believe it the first few times I heard it). My symptoms did improve over time but only after years of serious exhaustion, muscle weakness, pain, and the whole nine yards. Lyrica is the only medication that really has seemed to help, but my symptoms have still been bad enough that I couldn't work (I could not predict how I would feel on any given day, on bad days I literally could do nothing but lay down, and if I "overdid" it - like having a few active days in a row - it could take me a whole week to recover).

SO...a few weeks ago my doctor diagnosed "probable" Celiac and I went gluten free. I am seeing some pretty significant changes and although it's been up and down, I am really hopeful that I may eventually feel way better than I have in years. My question is, could the Fibromyalgia diagnosis have been wrong (or incomplete) in the first place, and the symptoms I had were really caused by Celiac? Obviously if that were true that would be great because it would mean that going gluten free would make it all go away... :rolleyes:

Has anyone else experienced FM getting better after going gluten free?

Hi all,

I'm new to this forum, but really wish that I had found you all years ago! I think that the best information that I have had comes from us - the people who are living with this every day.

IngridBeth, your situation sounds a lot like mine, mine is just a little backwards, so I can only speak from experience :) I have been dealing with chronic pain for about ten years with no specific diagnosis (so frustrating!). The only real relief that came for me was through changing my diet. I discovered my gluten intolerance (which my doctor is certain is Celiac, but I refuse to eat wheat again for 6 weeks in order for them to do the test) by following an elimination diet and then reintroducing foods. My reaction to wheat was quick and severe. Following the cleansing/elimination diet made me feel better than I had in years, and I have basically followed the diet since. I still experience pain, muscle weakness and exhaustion every day, but I can't even imagine how much worse that it would be if I was still eating gluten.

Within the past few weeks, I have seen a new set of doctors and had another round of tests and have been diagnosed with Fibromyalgia. So in response to your post, anything is possible as we all very well know, but as far as we can tell, my FM was probably being aggravated by gluten so when I cut it out of my diet, I noticed the biggest improvement that I have ever had in my day to day life. So your diagnosis of FM may not be entirely wrong,it may just be that one is aggravating the other. I would highly recommend trying a cleansing/elimination/reintroduction diet... who knows, you may find out that there are other foods that are contributing as well.

Hope this helps!

txplowgirl Enthusiast
txplowgirl
Posted

I have fibro too,

When I went gluten-free it helped some but it wasn't until I took out the nightshade vegetables (potatoes, tomatoes, eggplant and all bell peppers)that I started feeling better. They have low level toxins in them that cause swelling and pain. Then I found out that fibro sufferes react to aspartame in diet drinks. So I cut that out plus dairy and soy.

Since I have eliminated all those my fibro seems to be going into remission as well as my RA. I have been wondering lately if I have fibro and/or RA at all or if it has just been 40 years worth of gluten causing all these problems. I know slowly but surely i'm coming out of whatever it was. Took nearly 40 years to get this bad it's gonna take I figure at least 3 to 4 years to recover fully with the way i'm feeling now and i've been doing this about a year and a half now.

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