Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
1 1
SheenaM

Recovery Time/Tertiary Symptoms

Rate this topic

Recommended Posts

So I've been confirmed Celiac since my last post, and have been gluten free for about two months. My "gut" issues are gone, no bowel issues, no nausea, etc. However, I have a laundry list of tertiary issues that are probably partially due to malnutrition: muscle cramps, persistent eye twitch, lightheadedness, back pain, neck pain, (ladies) weird cervical/uterine swelling sensation, and the general fatigue is gone but I still fatigue quickly during activity. It really makes me miserable especially since I'm trying to hold down a full time job but I feel like I'm burning PTO faster than I can earn it. So the two main questions I have are 1-how long did it take all symptoms to go away (diagnosed at age 30) and 2-is it worth it to spend more time/money on trying to get another blood test for a nutrient panel?

Share this post


Link to post
Share on other sites
17 minutes ago, SheenaM said:

So I've been confirmed Celiac since my last post, and have been gluten free for about two months. My "gut" issues are gone, no bowel issues, no nausea, etc. However, I have a laundry list of tertiary issues that are probably partially due to malnutrition: muscle cramps, persistent eye twitch, lightheadedness, back pain, neck pain, (ladies) weird cervical/uterine swelling sensation, and the general fatigue is gone but I still fatigue quickly during activity. It really makes me miserable especially since I'm trying to hold down a full time job but I feel like I'm burning PTO faster than I can earn it. So the two main questions I have are 1-how long did it take all symptoms to go away (diagnosed at age 30) and 2-is it worth it to spend more time/money on trying to get another blood test for a nutrient panel?

Cramps, twitch, etc. 2 things to mainly look into, magnesium and B-vitamin complex. Look up defienices in both and you will see many fit your problems and probably find ones you missed.
Magnesium 2 main options. IF you have constipation go with Natural Vitliaty Calm dosing at 1/4 tsp (1-2g) and upping it 1/4 tsp too full dose over a week or til you get loose stools then back it back down (grams help with this measure wise) If no C then go with Doctors Best powder and mix it as it suggest.
B-vitamins a Sublingual or liquid is best. I use Liquid Health Stress & Energy and the Neurological Support 1 tbsp each 3 times a day.
Liquid health also has a Vitamin D supplement that many benefit from.

Time frames for symptoms...I still zombie if I get off supplements and require them even 5 years into the diet. Others find they can get all they need from a whole foods balanced diet after a year on the diet and healing. It depends from person to person, how often you mess up, the amount of damage, and secondary issues....I hear some feel better at 4 months the average seems to be around 6 with some taking up to 2 years to feel about normal. After a exposure it can take me 2-6 weeks to get back to normalish.

You would benefit getting follow up testing to see how your doing doing say every 4-6 months if you want the peace of mind. NOTE nutrient panels are hit and miss and many benefit from supplementing anyway.

Share this post


Link to post
Share on other sites

Two months in is such a short amount of time.  I am glad that you are feeling better and seeing progress.  It takes time to heal.  Expect to feel off (good days and bad) for up to a year or longer based on member comments I have seen over the years.   Make sure your diet is rich in proteins, fruit and veggies, etc.  

Unlike Ennis, I take no supplements, but did take iron for a few months (I was very anemic).    I just make sure my diet is varied and avoid processed junk food.  My anemia resolved within months.  

We are all different with other illnesses or collateral damage.  So, you just need to figure out what works for you.  I would say you just need more time to heal.  

 

Share this post


Link to post
Share on other sites

That's what I've been hearing is that nutrient panels are almost a waste of money. I did get some gluten exposure at one point and it was 2 weeks to feel decent again. I also have what I would consider to be generally awful/sensitive skin if you know of a good supplement, I've heard vitamin e might help, but would like to hear from one of you guys.

Share this post


Link to post
Share on other sites
1 minute ago, cyclinglady said:

Two months in is such a short amount of time.  I am glad that you are feeling better and seeing progress.  It takes time to heal.  Expect to feel off (good days and bad) for up to a year or longer based on member comments I have seen over the years.   Make sure your diet is rich in proteins, fruit and veggies, etc.  

Unlike Ennis, I take no supplements, but did take iron for a few months (I was very anemic).    I just make sure my diet is varied and avoid processed junk food.  My anemia resolved within months.  

We are all different with other illnesses or collateral damage.  So, you just need to figure out what works for you.  I would say you just need more time to heal.  

 

This may be what I needed to hear... I work in physical therapy and I'm always telling my patients that if their back or neck pain is due to 30 years of bad posture it's not going to take 30 minutes to fix. Same goes with nutrition I'd imagine >.< 

Share this post


Link to post
Share on other sites

You are right.  It took time to damage your small intestine and will take time to heal it.  Don’t forget to factor in the steep learning curve to the gluten free diet.  Expect to make a few mistakes along the way and deal with the setbacks.  Systemic issues (e.g. nerve issues) can take much l8nger to resolve.  Be sure your thyroid is functioning.  

It is SO hard to be patient!  

 

Share this post


Link to post
Share on other sites

Thank you for your question. My daughter age 8 is two months in and I can’t find any information about the pain she is feeling. You sound the same as her. I feel awful because I don’t know if her pain is real or not. She tells her teacher 3-4 times a day that she’s in pain but we are lost as to how we can help. She is completely gluten-free and is eating a diet with plenty of fruits and veggies. All these suggestions help too. Thanks 

Share this post


Link to post
Share on other sites
7 hours ago, 2/18:CeliacDaughter said:

Thank you for your question. My daughter age 8 is two months in and I can’t find any information about the pain she is feeling. You sound the same as her. I feel awful because I don’t know if her pain is real or not. She tells her teacher 3-4 times a day that she’s in pain but we are lost as to how we can help. She is completely gluten-free and is eating a diet with plenty of fruits and veggies. All these suggestions help too. Thanks 

The pain and symptoms very greatly from person to person, some have body pains, joint pains, gut pain, headaches, etc. Bit different for everyone, we have had some people compare the way it makes them feel to salmonella poisoning...they actually thought at first it was a gluten CC issue only to learn it was salmonella poisoing and this was more the one person.

Share this post


Link to post
Share on other sites
13 hours ago, 2/18:CeliacDaughter said:

Thank you for your question. My daughter age 8 is two months in and I can’t find any information about the pain she is feeling. You sound the same as her. I feel awful because I don’t know if her pain is real or not. She tells her teacher 3-4 times a day that she’s in pain but we are lost as to how we can help. She is completely gluten-free and is eating a diet with plenty of fruits and veggies. All these suggestions help too. Thanks 

Oh my gosh I'm so sorry you're going through that! I remember being in third grade and nobody believed how bad my headaches were (gluten induced migraines). I've found that physical therapy exercises are actually helping more now that I'm on the right diet as well so maybe something along those lines would be helpful too. 

Edited by SheenaM
Typos

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
1 1

×