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Muscle Pain

chgomom

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chgomom Enthusiast
chgomom
Posted

Hi All

I am a newbie here and went through a couple of yrs of garbage to get my diagnosis only after I fired my doc and went to a rheumatologist and begged him to help me figure out what was wrong.

So...my question is in muscle or bone pain really all that common...I feel like I am in more body ache kind of pain now that I am going gluten free....my eyes are even dry....

Or am I just being a big baby??

Thx all...sorry for asking something that probably been asked a million times...

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nikki-uk Enthusiast
nikki-uk
Posted

Although muscle and bone pain can be typical with celiac disease (are you G.F yet?)the fact that you mention your eyes are dry made me take notice.

Dry eyes and mouth can be a symptom of an autoimmune disease called Sjogrens disease.

I would go back to the rheumatologist and mention this.

As you have celiac disease you are more prone to other auto-immune diseases

That said,when first diagnosed with celiac disease and you go G.F there can be a period of feeling worse before you get better.

For some coeliacs diarrhoea isn't their biggest symptom-joint,muscle and bone pain can be-and it can take a few months for things to settle down.

Hope you feel better soon,here's a link about Sjogrens

Open Original Shared Link

Guest Robbin
Guest Robbin
Posted

Hi and welcome. Perhaps you have fibromyalgia too. Many of us on here have fibro and you do feel worse before you feel better. As for the eyes, it could be autoimmune, or it could be from general poor health from the celiac. I would talk to your dr., but it could be a matter of being able to absorb nutrients when you heal.

chgomom Enthusiast
chgomom
Posted
  • Author

Hello!

Thanks for the post back, I did have those labs done and it came back negative although it does run in my family. I think I will go back to him a few months after the gluten-free diet and tell him I to run it again.

ebrbetty Rising Star
ebrbetty
Posted

welcome to the board, I was thinking fibro too, the only thing that helps me with my muscle pain is strengthening your core and exercise, sometimes I have to force myself to get up and get on my glider or lift weights but its made a big difference.

judy05 Apprentice
judy05
Posted
Hi All

I am a newbie here and went through a couple of yrs of garbage to get my diagnosis only after I fired my doc and went to a rheumatologist and begged him to help me figure out what was wrong.

So...my question is in muscle or bone pain really all that common...I feel like I am in more body ache kind of pain now that I am going gluten free....my eyes are even dry....

Or am I just being a big baby??

Thx all...sorry for asking something that probably been asked a million times...

Have you had your thyroid gland checked? Thyroid disease is an autoimmune disease that goes along with Celiac, diabetes, etc...

barbara3675 Rookie
barbara3675
Posted

These have all been good suggestions.....fibro and thyroid. I have both and very dry eyes. I take lots of magnesium with malic acid plus Mobic which is a strong anti-inflammitory which keeps the fibro in check (other than some flares during times of stress) and I take Synthroid for the thyroid condition. There are no blood tests for fibro, only ones to rule it out. Best wishes in nailing your diagnosis. Barbara

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chgomom Enthusiast
chgomom
Posted
  • Author

Hello all,

The only thing that came back in my blood work ever was Celiac...on a thresh h0ld of 10 I was 24 so more than double the high end of negative, so as a result positive. My thyroid function is normal, but my c3c and c4c are way off and my crp, which is an inflamtion marker in this instance is high as well. I am severly sensitive and my doc thinks because I went so long with them jerking em around saying it was gerd, or needing to "eat better" that I have some neuromuscular aspects coming into play here now :(

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    • AlwaysLearning
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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