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Dealing with Chronic Pain as well as Celiac-disease

Murfee

By Murfee
in Coping with Celiac Disease

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Murfee Newbie
Murfee
Posted

Hello everyone! Im so very thankful to find you and read your experiences and advice! I was diagnosed a few months ago with celiac disease through a blood test. A little (uh maybe, lol) bit of history....I live in chronic pain from my body rejecting inguinal hernia mesh. The past year I started getting worse brain fog, dizziness, extreme fatigue, nauseous, serious bad diarrhea (previous I was fighting mostly constipation, with a couple days of complete opposite, could not figure out what the heck , labeled as IBS) , along with noticeable worsening depression and anxiety.....and the list goes on. ? Well, I associated all of this to my body being so tired of fighting chronic pain with no help from the medical community....other than brush you off and push onto some other Specialist. During this time I developed a rash, starting on my right for arm....then it switched to the left a month or so later! I was frantic, before disabled, I was OCD clean everything, thought for sure I had some type of bug, virus, allergy, etc.....went through everything in the house trying to figure out where the heck this rash was coming from!! Months! Until the day I Googled photos of it, ugh....along with the gut/BM issues...wow, I think I have Celiac-disease! Thank GOD my PCP sent me for a blood test....I felt myself deteriorating (still do). I went gluten-free cold turkey, man was that a seriously rough couple weeks, who would have even imagined!!! Then through all of your posts, I found about all the cookware etc - basically your entire kitchen is freaking gluten lurking!!  Oh my gosh!! And on top of everything....can we go into more debt, that'd be great, NOT!! Thank you SO very much for letting me rant, no one understands....Does anyone else also suffer chronic pain on top of this? I mean I thought I had a hard time making a meal before, not being to stand long etc....gggrrrr!! Sending ((((hugs)))) and prayers to everyone!! ??❤

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dharwood Rookie
dharwood
Posted

Hello ,

I am 5 months in and have had chronic muscle pain starting right after going gluten-free. My Dr. Claims it is fibromyalgia and has me on gabapentin but it isn't touching the pain. I am seeing her on Monday and will wean myself off of it. I seen a Dr at the VA this week and went through the pressure points and it had no effect on me. My pain is in my large muscles in my legs and arms and also joints in hands. I feel it is autoimmune issues and I get some hope and comfort (MUCH needed) when I read posts on here like yours. When I read people didn't find relief for a year or so I feel there still is hope. I spent 21 years in the Army and this has been the hardest 7 months of my life. Many times I've gone to bed and just thought, "if I just don't wake up tomorrow that would be fine with me ". Thank god for my wife, kids and grandkids. The VA Dr put in a couple referrals for the U of W, but can't promise me they will cover it. I just want to know what's causing the pain. If it's just celiac, then okay, I know in time I will heal. But if it's something else let's get busy addressing it. 

 I hope you get answers and start feeling better sooner than later. Just hang in there and be strong. It's a heck of a battle, but worth it. 

ironictruth Proficient
ironictruth
Posted

This came on gradually for me after a period of eating gluten in prep for biopsy. At first I did not think too much about it. But I have pain in between my shoulder blades, tender to touch, ribs/chest and knee joints.  Sometimes it feels like a dagger through my upper spine. 

Plus I get flu like aches now too. 

squirmingitch Veteran
squirmingitch
Posted

Murfee you are just starting out, it's going to take time to heal. I had pain I can't even describe all over my body before I was dx'd. The longer I was gluten free, the more pain went away. I was 54 & had lower back pain since my teens. I lived with it. I don't live with it anymore. It's so bizarre to me that my back doesn't hurt anymore after a lifetime of gnawing pain. I never imagined that would resolve from going gluten free. It still amazes me.

As to your body rejecting the hernia mesh, that was before you were dx'd right? You just might find that your body will not reject it if you get it re-done after being gluten-free for a good while. For celiacs, gluten causes body wide inflammation so you will likely be surprised at the things that will resolve for you.

Hang in there!

Murfee Newbie
Murfee
Posted
  • Author
21 hours ago, dharwood said:

Hello ,

I am 5 months in and have had chronic muscle pain starting right after going gluten-free. My Dr. Claims it is fibromyalgia and has me on gabapentin but it isn't touching the pain. I am seeing her on Monday and will wean myself off of it. I seen a Dr at the VA this week and went through the pressure points and it had no effect on me. My pain is in my large muscles in my legs and arms and also joints in hands. I feel it is autoimmune issues and I get some hope and comfort (MUCH needed) when I read posts on here like yours. When I read people didn't find relief for a year or so I feel there still is hope. I spent 21 years in the Army and this has been the hardest 7 months of my life. Many times I've gone to bed and just thought, "if I just don't wake up tomorrow that would be fine with me ". Thank god for my wife, kids and grandkids. The VA Dr put in a couple referrals for the U of W, but can't promise me they will cover it. I just want to know what's causing the pain. If it's just celiac, then okay, I know in time I will heal. But if it's something else let's get busy addressing it. 

 I hope you get answers and start feeling better sooner than later. Just hang in there and be strong. It's a heck of a battle, but worth it. 

Thank you, I hope you can get some answers asap! I have been experiencing the deep muscle aches also since going gluten-free! Just forearms and tops of thighs....it only seems to happen when I've got poisoned...and just off and on. What an awful disease! ❤

cristiana Veteran
cristiana
Posted

I got all sorts of weird pains after going gluten free. One nasty pain was to do with my sacroiliac joints which apparently often affects celiacs but it seemed to refer to my groin, my lower back, my abdomen. It was there much of the time but played up particularly badly when I walked, which was a pain in itself as I love walking. Now I am grateful to say it is much better - it was probably at its worse six months after diagnosis, and it hung around for a few months.  

My own pre-DX journey was horrid, and I wonder sometimes if the pain and other weird symptoms came about partly a response to months of stress.  Also, I think with chronic pain you end up with a bit of a viscious circle -  you get the pain, you tense up, it makes the pain worse, etc. 

One thing that I found helped was having a warm bath with Epsom Salts.  I was told by someone to put a good amount in a bath for about 20 minutes (with no other products) and have a good soak.  I'd recommend it.

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ironictruth Proficient
ironictruth
Posted
9 hours ago, cristiana said:

I got all sorts of weird pains after going gluten free. One nasty pain was to do with my sacroiliac joints which apparently often affects celiacs but it seemed to refer to my groin, my lower back, my abdomen. It was there much of the time but played up particularly badly when I walked, which was a pain in itself as I love walking. Now I am grateful to say it is much better - it was probably at its worse six months after diagnosis, and it hung around for a few months.  

My own pre-DX journey was horrid, and I wonder sometimes if the pain and other weird symptoms came about partly a response to months of stress.  Also, I think with chronic pain you end up with a bit of a viscious circle -  you get the pain, you tense up, it makes the pain worse, etc. 

One thing that I found helped was having a warm bath with Epsom Salts.  I was told by someone to put a good amount in a bath for about 20 minutes (with no other products) and have a good soak.  I'd recommend it.

Open Original Shared Link

 

I am totally doing this tonight!

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