Hi, I am in the same boat! I am glad you asked that question because it feels better not being alone. I had undiagnosed Celiac disease for four years. All my blood tests came back normal and the doctor could not figure out what was wrong with me. The worst thing was my symptoms were atypical so they could not put two and two together. It got to the point of a horrible fatigue and complete exhaustion (on some days I could not get up). I could not eat anything - I had upset stomach.
My new doctor told me to go gluten-free, but by that time I was in a very bad shape. Most people say they feel better after a week or so after going gluten free. It was not my case. First of all, as soon as I went gluten-free, I became lactose intolerant. Then grain intolerant. Then soy and legume intolerant. For a while all I could it was steamed vegetables and meat. That's how I discovered Paleo.
So I have been gluten-free since September 1st (that's 7 months) and on Paleo since October 22nd.
I went back to my doctor and he said I had to do a gastroscopy. I had bleeding gastric erosion. My doc put me on PPI (Prilosec). At first I was doing better, and then my fatigue went back to the pre-glutened levels. I quit taking the PPI on March 15 (my doc was against it, but... hey, this is my life).
After quitting my meds at first it got slightly worse, but now it is better. I am recovering, but it is taking a long long time. My symptoms are: fatigue, low energy, mental clarity, but they are all mild compared to what it was in the summer.
Now my take this all. Of course, I am not a doctor, but I have read so much about celiac, that I think I know more about it, than my doctor (he is a former surgeon).
So, my villi is in atrophy and I am not getting enough nutrients. As soon as I went gluten free, my body started to attack everything that seems/feels remotely like gluten - dairy, grains, soy, etc. When all this was removed (Paleo) it started to attack itself - the stomach lining, other organs - God only knows what. That's why I developed gastritis - it was an autoimmune response.
Even though I am slowly recovering, it is taking me too long and the recovery process is very uneven. I wish I could speed it up somehow. I am also noticing that certain foods (especially virgin coconut oil and chocolate) give me a sudden burst of energy.
I went to a herbalist and am awaiting for my herbs to arrive. He said that my liver is affected and I need to stimulate it (with herbs). I will try that. I am also trying to find a good naturopath.
One of the people here, Nancy, says that making water kefir helped her immensely. I am taking probiotics now (for gut health, since gluten has completely screwed it up). I get a weird reaction from fermented foods so I want to wait a bit before re-introducing them.
Here is my advice (very unprofessional but since doctors don't know anything, this is all I can offer):
- Keep eating Paleo (no eggs, no dairy, no nightshades, no nuts). In my case it is also no spices and no citrus fruit.
- Think about adding good probiotics or water kefir (as Nancy suggested).
- Think about following Terry Wahls guidelines. The difference between Paleo and Terry Wahls is that she prescribes (like medicine) 9 cups of veggies (leafy greens, cabbage, onions, mushrooms, rainbow colors). I cannot eat some of the things she suggests, but I follow her 9 cups per day protocol.
- Do not use any oils. I am still looking for a good substitute since we cannot have butter.
- If my herbs will help me, I will tell you the source. If not-I will not recommend them.
- There is another gluten intolerant Paleohacker here, Ali - she told me she will share what her naturopath will tell her.
- Don't give up. Don't ever give up. You are not alone!