Please help - at wits end

[HollyWhispersWildly]

5 hours ago, maseymn said:

Holly, I figure I went at least 28 years with active celiac before I was diagnosed. Had abdominal pain all the time, tired all the time. I was diagnosed and treated for depression, then thyroid, then sleep apnea, then anemia. It was the anemia that made my doctor test me for celiac (I couldn't absorb even prescription iron). She wanted me to have a biopsy to confirm (I did have multiple types of celiac antibodies in my blood) but I refused because I would have had to wait about 2-3 months. She said "What would you do if the biopsy indicated you did NOT have celiac, but you felt better on a gluten free diet?" I said "I'd never eat gluten again as long as I lived". She set me up with the nutritionist that day and I've never looked back. I've had doctors since try to get me to do a gluten challenge and have the biopsy, but I've told them I'm just not that curious. I know it's celiac -- my body was a mess due to not being able to absorb any vitamins etc. for years. I'm no longer anemic, my bones have gotten better, and I feel much, much better. I've been gluten free for about 14 years and I'll be gluten free until I die. There's nothing edible in the world that's worth how AWFUL I felt for over 20 years of my life. I wish you well, but if you feel better on a gluten-free diet, listen to your body. I wish you well.

Yes that’s similar to my experience. I was prescribed Ferrous Sulfate and my ferritin level went up to 31ug/l and then stayed at that level for months even taking the ferrous sulfate every day. I can’t wait to feel better. It’s going to be weird not to be exhausted all the time! If it was more than a week that I had to wait for endoscopy I would do the same as you and simply go gluten-free but for the sake of a week, I think it’s worth getting a proper check over x

[HollyWhispersWildly]

On 6/24/2021 at 12:12 PM, Wheatwacked said:

Try a hot shower or bath at bedtime. It helps me. I rinse with Listerine then brush with a $15 throwaway electric spin brush. The antiplaque mouthwash softens the plaque so the brush is more effective even without abrasive toothpaste. Image sandpapering your car to keep it clean. I was put on coffee in sixth grade for ADD. I still need a coffee at bedtime. In 1976 when my 6 month old son was diagnosed Celiac, the doctot told us that by first grade the teacher will be begging us to put him on Ritalin, and so it happened. Celiac is always there but until you eliminate gluten you don't see the connections, largely because of advertising. Where would Prilosec be without wheat. If your gut is intact, you won't have nutrient deficiencies because of it, but vitamin and mineral deficiencies are rampant  in the general population; many foods that you will delete have mandated added supplements and you may have to compensate. Don't doubt yourself, you've already seen improvement on GFD. 'We're like salmon swimming upstream in a sea of sceptics. 

Yes we are aren’t we. I am astounded that I’ve had low iron for years and exhaustion and the doctors have never even thought to test me, but instead thrown antidepressants at me. No wonder they didn’t help! Is the itching a sign of Celiac?!