Permanent Intestinal Damage?

[Fine]

I went gluten free almost 3 years ago and still suffer for up to 3 weeks even with just cross contamination and have recently developed other issues.  I am now 64 but believe I am life-time celiac.  I am also in autism spectrum.  1.5 years ago I started showing signs of Sjogren's (which my mother had along with other autoimmune diseases) and Addison's, but am testing negative for those. Also negative for Hashimoto's.  I go low  sodium periodically and self-correct with salt water sole (1-2 tablespoons every morning) and licorice supplement when needed.  Muscles get weak and I am constantly fatigued (have symptoms of hypothyroid as well and am on levothyroxine but think I need more; also test "normal" on this count).  I also go anemic still unless I take daily iron along with a host of other supplements.  I believe my mother was celiac and never diagnosed.  I am self-diagnosed as doctor never thought to check and I went gluten free on my own and it made such a huge difference until like I said 1.5 years ago when these other problems came up.   Have any of you gone gluten free only to have other issues start showing up even after a couple/few years?  I don't think my intestines are healing.....  I do not want to undergo the biopsy...will not be able to tolerate it.  Feeling frustrated and endocrinologist of no help.....  Any advice appreciated and helpful to know if others out there going through things like this...

[trents]

First, it is very common for autoimmune diseases to come in bunches. If you have one it is very common to develop others over time. And yes, they do run in families so you come by these things honestly.

Second, it is a well-established fact that many Celiacs never experience complete gut healing, even when they make a sincere effort to eat gluten free. Cross contamination may keep it smoldering but there may be also other issues that prevent some Celiacs from healing that we don't completely understand but have nothing to do with gluten ingestion. The term is "refractory" Celiac disease.

Third, I don't mean to be nosy but why is it you say you wouldn't be able to tolerate and endoscopy/biopsy? They use a method of sedation that doesn't put put you completely out but eliminates the discomfort (at least you won't remember it). Called conscious sedation. I've had it done multiple times and it wasn't a frightening experience by any means.

[Ennis-TX]

1 hour ago, Fine said:

I went gluten free almost 3 years ago and still suffer for up to 3 weeks even with just cross contamination and have recently developed other issues.  I am now 64 but believe I am life-time celiac.  I am also in autism spectrum.  1.5 years ago I started showing signs of Sjogren's (which my mother had along with other autoimmune diseases) and Addison's, but am testing negative for those. Also negative for Hashimoto's.  I go low  sodium periodically and self-correct with salt water sole (1-2 tablespoons every morning) and licorice supplement when needed.  Muscles get weak and I am constantly fatigued (have symptoms of hypothyroid as well and am on levothyroxine but think I need more; also test "normal" on this count).  I also go anemic still unless I take daily iron along with a host of other supplements.  I believe my mother was celiac and never diagnosed.  I am self-diagnosed as doctor never thought to check and I went gluten free on my own and it made such a huge difference until like I said 1.5 years ago when these other problems came up.   Have any of you gone gluten free only to have other issues start showing up even after a couple/few years?  I don't think my intestines are healing.....  I do not want to undergo the biopsy...will not be able to tolerate it.  Feeling frustrated and endocrinologist of no help.....  Any advice appreciated and helpful to know if others out there going through things like this...

I got 6+ weeks diarrhea from my last contamination. Celiac disease is life long, no cure other then a gluten free diet.
I also have Asperger Syndrome, ADHD, BiPolar, Ulcerative Colitis. and tons of food issues. It is very common for us to develop new food issues each time we get exposed...I noticed after my last exposure I can not eat any meat other then fish now. I vomit with beef, turkey, porky, chicken, and crab....on top of all my issues you can find in my signature
I still have to supplement B-vitamins, Vitamin C, Magnesium daily. I had iron issues but eat pea protein and pumpkin protein which are really high in iron.
Pro tip with iron. Take with a vitamin C supplement, they work together.

[tessa25]

You can always do the complete celiac blood test and see what your levels are. Maybe you're getting trace amounts of gluten without knowing it.

[Fine]

Thank you all for your input and information.  To the one curious about not wanting to undergo biopsy:  for me going to a doctor for any reason is somewhat traumatic--believe it has to do with being in autism spectrum.  I only go when necessary and the biopsy will not change anything other than perhaps show where my intestines stand.  I will still have to be gluten free for life.  If I have other autoimmune issues they are not showing up in lab work.  Some of this may have to do with the fact I have been following the Wahl's Protocol for about 6 months now and it does seem to be making a difference in my body.  I will try to follow the Wahl's more diligently along with being more diligent on tracking down any possible gluten contamination (i.e. in the generic garlic powder I WAS using.....said it my contain traces of wheat...who would have thought that!)  Being my age and probably life-long celiac whose system shut down at age 59-60 and did not figure out I was celiac until then, my guess is I may not totally heal; but that's ok I guess as I am getting better......