Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Diagnosed - So Much Pain

chgomom

By chgomom
in Coping with Celiac Disease

Recommended Posts

chgomom Enthusiast
chgomom
Posted

hello,

I am a newbie here so my apologies if this question hsa been asked a million times before.

I spent years being sick, and in pain burping, getting sicker and sicker and them just telling me I neeeded to eat better and I could'nt possibly be eating as well as I was eating since I was this sick. Then the yrs of antibiotic creams and garbage with the DH I had on my face telling me I was eating too many sweetis and it was just acne.

Anyway, about 2 mos ago I fired my doctor went to a rheumatologist crying and begging him to run what ever test he could think of that he thought might fit my history. One of them was celiac, and it came back 24 with a threhold of 10 or below being normal. He said when I saw your skin and your face, and the fact it all centered around food, I thought that might be it.

Anyway....now I have been learning and going gluten free. No biopsy as I am opposed to the unless this doesn't get better, which it actually has a little.

My question though, is muscle and joint pain....I woke up this morning sleeping as I normally do and my back felt like I had been beated, so did my arms and my eyes are dry. I've had muscle aches and this isn't it...it feels deeper. I have another appt on Wednesday because they are thinking I could have some problems with my minerals....is this achiness and pain common....its really quite painful....I mean I want to just curl up with a heating blanket and veg...

Sorry for whining but its quite painful and I just want to know if anyone else has gone through this....

Also...can anyone offer any quick meal suggestions for someone highly sensitive.....

Thanks all!

Erin

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Sorry you're feeling crummy. I had terrible joint pain, so your muscle/joint pain could definately be from this. I take msm, glucosamine, chondroitin for my joints, and it helps. I apparently still have some deficiencies as I still need all of the supplements I take as compensation for the malabsorption.

Quick meals: corn tortillas wrapped around whatever you like -- chicken, avocado, cucumber, beans, etc., Eggs -- cooked with veggies like asparagus, leeks, mushrooms, anything on the grill -- be careful as regular charcoal is not gluten free you need the natural kind. Keep it simple, meats, veggies, eggs, fish, fruit, etc. When I was sick and didn't have the energy for even simple meals, I ate Amy's frozen dinners.

queenofhearts Explorer
queenofhearts
Posted
hello,

I am a newbie here so my apologies if this question hsa been asked a million times before.

I spent years being sick, and in pain burping, getting sicker and sicker and them just telling me I neeeded to eat better and I could'nt possibly be eating as well as I was eating since I was this sick. Then the yrs of antibiotic creams and garbage with the DH I had on my face telling me I was eating too many sweetis and it was just acne.

Anyway, about 2 mos ago I fired my doctor went to a rheumatologist crying and begging him to run what ever test he could think of that he thought might fit my history. One of them was celiac, and it came back 24 with a threhold of 10 or below being normal. He said when I saw your skin and your face, and the fact it all centered around food, I thought that might be it.

Anyway....now I have been learning and going gluten free. No biopsy as I am opposed to the unless this doesn't get better, which it actually has a little.

My question though, is muscle and joint pain....I woke up this morning sleeping as I normally do and my back felt like I had been beated, so did my arms and my eyes are dry. I've had muscle aches and this isn't it...it feels deeper. I have another appt on Wednesday because they are thinking I could have some problems with my minerals....is this achiness and pain common....its really quite painful....I mean I want to just curl up with a heating blanket and veg...

Sorry for whining but its quite painful and I just want to know if anyone else has gone through this....

Also...can anyone offer any quick meal suggestions for someone highly sensitive.....

Thanks all!

Erin

Welcome to the forum-- ask ANYTHING you want here. That's the whole idea! This board has been a real lifesaver for me, by far the most helpful source of Celiac wisdom & moral support.

I've definitely suffered from "bone pain" over many years, mainly in knees & hips but sometimes all over. I used to say it felt as though I'd fallen down the stairs-- just aching all over. It seems to have diminished a bit in my 1 month of gluten-freedom, & many people say they have achieved great relief over time, so I'm hopeful.

Glucosamine helped me too. But the main thing I've found extremely helpful is yoga-- it hurts quite a bit while I'm doing it, but I think in my case, muscle tension adds hugely to the overall achiness & anything that loosens me up helps a lot. In my experience I can hurt 20 minutes a day doing yoga, or all day not doing it!

Salad is my favorite quick meal in summertime, with boiled eggs or cheese or leftover chicken for protein, lots of dark greens, tomatoes, cukes, carrots, whatever's on hand. And rice crackers on the side for crunch & carbs. In the winter I make a big batch of vegetable soup when I have time, & have a bowlful whenever I need something in a hurry.

Hope you feel better soon!

Leah

whitball Explorer
whitball
Posted

welcome to the forum. I have had many years of muscle pain, fatigue and burning. The gluten free diet has been a godsend. Listen to the advice offered here on this forum. The people here have been awesome and helpful. Ask questions and don't be worried if it sounds stupid. It's not. Stick with the diet and start slow. Don't introduce too many new foods. Let your stomach heal. This is the same good advice that I was given. Good luck and take care.

nikki-uk Enthusiast
nikki-uk
Posted

See my post here

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      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...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      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 m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748
    Clare Durham
    Newest Member
    Clare Durham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      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
      My only proof

      By AlwaysLearning · Posted

      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.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      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.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.