Healing timeline for NCGS

[CaitCurr]

Hi Everyone,

I have NCGS and have been following a very strict GFD for the past eight months. My fatigue has gone away, but I still have lingering extra-intestinal symptoms such as weakness and muscle twitching.  Anyone else with NCGS take this long to heal? How long could it take for the body to heal after starting a GFD? I've heard it could take up to a year, but have not found much evidence. Please share how long you it took for your most stubborn symptoms to heal after starting the GFD.

Thanks!

[cyclinglady]

I have celiac disease, so I am not sure I would be much help.  It sounds like the gluten-free diet is helping.  Are you working with a doctor who diagnosed you with NCGS?  Is he or she proving follow-up care?  
 

 Either look to your diet (like do you eat out where you might still be getting gluten into your diet) or see your doctor.  You might have something else going on.  I had ongoing symptoms. Turns out  that I have multiple autoimmune diseases.  

Edited July 19, 2020 by cyclinglady

[Awol cast iron stomach]

2 years 4 months.  Other health problems came out after the gluten intolerance  "white noise" settled. So for me symptoms overlap, but those I consider my gluten issues took me over 2 years.

[CaitCurr]

Thank you Awol for your response. It gives me hope, believe it or not. Can you share what type of symptoms you had, and maybe if there were any other treatments you did to help you heal?

[CaitCurr]

14 hours ago, cyclinglady said:

I have celiac disease, so I am not sure I would be much help.  It sounds like the gluten-free diet is helping.  Are you working with a doctor who diagnosed you with NCGS?  Is he or she proving follow-up care?  
 

 Either look to your diet (like do you eat out where you might still be getting gluten into your diet) or see your doctor.  You might have something else going on.  I had ongoing symptoms. Turns out  that I have multiple autoimmune diseases.  

I am considering doing an anti-inflammatory diet with no sugar, dairy, soy, etc. to help my body heal some more, but I am just looking for some others going through a similar experience. 

 

[Awol cast iron stomach]

7 hours ago, CaitCurr said:

Thank you Awol for your response. It gives me hope, believe it or not. Can you share what type of symptoms you had, and maybe if there were any other treatments you did to help yo

 

Common Symptoms of Non-Celiac Gluten Sensitivity plus more

Bloating, gas or abdominal pain

Diarrhea or constipation

Nausea

Headache

Brain fog

Joint pain

Numbness in the legs, arms or fingers

Fatigue

https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/symptoms/celiac

My additional symptoms and probably more I am forgetting include rashes, cerebellar pain, peripheral neuropathy, swollen organs/pain, stabbing pains in right abdominum, muscle twitches, history of vitamin D deficiency, hair shedding, and I am sure more I choose to forget.

I also sought out acupuncturist to manage symptoms.

[CaitCurr]

1 hour ago, Awol cast iron stomach said:

 

Common Symptoms of Non-Celiac Gluten Sensitivity plus more

Bloating, gas or abdominal pain

Diarrhea or constipation

Nausea

Headache

Brain fog

Joint pain

Numbness in the legs, arms or fingers

Fatigue

https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/symptoms/celiac

My additional symptoms and probably more I am forgetting include rashes, cerebellar pain, peripheral neuropathy, swollen organs/pain, stabbing pains in right abdominum, muscle twitches, history of vitamin D deficiency, hair shedding, and I am sure more I choose to forget.

I also sought out acupuncturist to manage symptoms.

I have hair shedding too and muscle twitches too! Did those stop after 2 years, 4 months as well?

[Kate333]

Hi CaitCurr.     So sorry to read about your problems. 

Your symptoms might not be even be linked to G consumption at all.  So many of the symptoms you describe can be attributed to a variety of health problems, including IBS, chronic stress/anxiety, insomnia, other immune issues, etc.  Also "NCGS" is still a very new (and controversial) diagnosis in many medical circles/practices--not even recognized by most traditional gastro specialists/docs.   

I suggest you first talk to your doctor (and get blood tests for G antibodies, TSH, and vitamin/mineral levels) before making any drastic changes in your diet.  Also, healthy gluten-containing food contains many vital minerals/vitamins/fiber your body needs and which are not easily replaced on a strict gluten-free diet.    Speaking from experience as a fairly newly-diagnosed "likely celiac", I can tell you that starting and trying to exclusively stick to a strict, gluten-free diet is no easy feat, even with so many gluten-free labels one sees in stores.  It's such a radical change and difficult, that I wouldn't even want to try it unless absolutely medically-compelled to do so by a blood test/EGD.  

These days gluten-free diets are also widely touted by food manufacturers as "trendy" or "healthier for everyone" (an unproven claim) but I think that may be to help boost sales.  I personally know many non-celiacs who swear they feel better eating gluten-free-labeled foods...but I think it may be because they are consuming less junk full of additives, fillers, and chemicals rather than going gluten-free. 

You might also explore getting food allergy testing to see if you have bad, immediate reactions/triggers when you eat soy, dairy.  Dairy intolerance is VERY common, esp. with age.  It's a great idea to restrict sugar and opt for natural sources of sweets instead (fresh fruits).   

Good luck on your healing journey!