My so-far recovery - FOR PEOPLE WHO FEEL HOPELESS

[Phosis]

I just want to chime in. I have not been "officially" diagnosed, as I don't actually see my GI doctor til february to discuss my results. But I had a positive TTG-IGA (negative for any other blood test), near total villous atrophy, elevated IEL, and was also diagnosed with chronic gastritis (no H. Pylori found in biopsy).

I have been on a gluten free diet for a little over three weeks. I am on a PPI for about a week and a half. Before all this, every time I'd go to the bathroom, it was yellow, floating. Tons of bowel urgency. Horrible heartburn and reflux symptoms. Just a slew of discomfort and issues.

I have largely stuck to an AIP, Auto Immune Paleo diet for the last week or so. My sleeps are now better. My stool seems to be normalizing. (doesn't float, back to a brown color.) My stomach burning/discomfort is pretty minimal. I need to eat regularly, or my stomach becomes uncomfortable. For the longest time, I was never hungry - I feel hungry quite a bit more often now. I felt like food was always stuck in my throat (I have esophegeal damage, schatzki ring, and gastritis doesn't help) now that "globus" sensation is very seldom, maybe a few minutes a day.

But the REAL reason I am staying in check and able to recognize these changes is not me - it's my wife. When I have a bad day, or things aren't feeling right, especially in the winter months it's extremely easy to fall into a slump where things seem hopeless. But my wife will bring me in check, and remind me of how many good days I am having - and how the bad times are far more isolated. When I refer to my food journal, I can see how not only has it not been that long since I started to change my habits, only a few short weeks, but how much worse things were a month ago.

We NEED these reminders, especially if you are like me and prone to be anxious. So starting a journal, or posting here and looking at past posts, or even just asking your significant other - how the heck am I doing? Is a huge confidence boost.

I have read elsewhere that just stopping celiac is not necessarily the only step to FIXING autoimmune disorders of the gut. This requires work, and time, and I am an impatient man. But WILL is the other thing. The will to get better, the will to BELIEVE you are improving, and the patience to wait to see those signs. 

Sometimes I have days where I am googling symptoms like mad that I have already googled before...what if it's this? What if they missed something? What if I have pancreatic cancer? And all kinds of other nonsense.

This is the greatest enemy for people like myself with anxiety, so I try to avoid that, be confident in my diagnosis, and stay the course. And there ARE improvements.

Rely on them, and on your loved ones, and be confident.

[Wheatwacked]

On 12/20/2019 at 12:15 PM, Phosis said:

people like myself with anxiety

Good luck with your doctor appointment. Be sure to discuss vitamin deficiency with him. For winter blues I am on 10,000 iu D3. 5 mg a day of Lithium Orotate eases my anxiety and for upset stomach I prefer Alka-Selzer. It neutralizes the acid temporarily (you need hydrochloric acid to digest food) and the aspirin is a mild analgesic/anti inflammatory and to be honest it works as a appetite enhancer for me. Choline clears fats from the liver. Other vitamins and minerals do other things and with no villi and poor gut health you likely are deficient in many. I was/am. Keep the faith. It keeps getting better. 

[Keight]

Thanks for the reminder! I probably do need to keep a journal. Watching everyone else eat xmas food whilst I nursed a glutoned gut really did my head in. A journal to look back on would help. 

 

I watched Youtube videos on LCHF and keto to cheer myself up. ?

[rt-116]

Love the positivity of this post, thank you! I am also extremely prone to getting anxious and getting lost on the internet looking at more concerning reasons for symptoms. However, was diagnosed officially yesterday after biopsy results came back, so feeling optimistic about managing this going forward. Thanks again and good luck to you!  

[BuddhaBar]

That Dr. Google... Don't know how many diseases he told me I had before I knew I had celiac. MS, brain tumor, ALS, bowel cancer, liver disease, HIV etc etc. 

But I remember in the beginning when I had my first symptoms and googled. Ended up at reddit where a guy asked about his symptoms which were similar to mine. Someone replied that he might have celiac disease so I googled that. Thought to myself "no I dont have that" and moved on, hahaha. 

Thanks for the great post!