Another question about recovery time. Need some reassurance!

[Maddiecl]

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

 

 

[cyclinglady]

Most forum members will tell you that recovery can take up to a year or longer.  I think, in theory, the villi can rejuvenate themselves within weeks.  But it takes time for systemic issues to resolve and time to learn the gluten free diet.  I think doctors tend to forget that celiac disease goes beyond the gut.   It is not uncommon for antibodies found in the bloodstream up to a year or more later.  So, you are doing just fine!  Be patient (so hard, I know).  

[selectivefocus]

  On 2/6/2018 at 8:36 PM, Maddiecl said:

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

 

 

Expand Quote  

I've been gluten free 13 months.  Many of my issues have resolved, but I've gained a lot of other food issues in the wake of eliminating gluten because my gut was so damaged and my immune system was so overactive. My daughters have now joined me in this awful club. It takes a long time. I'd say in the first month my DH on my hands disappeared and my liver and spleen stopped hurting.  But I'm still healing. 

[Millerbabe]

  On 2/6/2018 at 8:36 PM, Maddiecl said:

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

 

 

Expand Quote  

I would like to say once you stick to a decent diet that works for you it will get so much better. Feel better and not gassy . I stopped eating dairy and peanuts. I follow a blood type diet. Lifestyle change not a diet..

 

[Maddiecl]

Thank you all for the replies! I really appreciate it!