So sorry to hear of your struggles, TwoBoyz. Whenever I went gluten-free, things improved. A couple questions: (1) Have you been 100% GF? For instance, drinks like Ensure often have hidden forms of gluten in them. (2) Could you possibly have another trigger besides gluten? One of my friends must avoid both gluten and soy, while another can't consume gluten, dairy, or canola oil. (3) Has your thyroid been checked? Just recently I was having several issues, such as hair loss, a lump in my throat, fatigue, and skin issues. My doctor figured out that I was iodine deficient. Once she started me on an iodine supplement (just 2-3 drops per day), I've been feeling better, the lump in my throat is gone, etc. (4) Have you ever watched Dr. Peter Osborne's youtube videos? He and others recommend a totally grain-free diet. So I often eat grain-free, not just gluten-free.

BTW, my blood work came back negative, but there's no doubt that gluten is bad for me. One doctor told me that the blood test is only 40% accurate anyway. And apparently even a biopsy can come back negative if they test an unaffected portion of the intestine. Another thought with your circumstances is the "Herxheimer Effect." That's when you feel worse before getting better, probably because your body is going through a major transition. Many people with yeast overgrowth complain of "Herx" when beginning probiotics, eliminating sugar, etc. Not being a doctor, I certainly don't know if any of my thoughts pertain to you. But hopefully you will find something to work for you. Best wishes for your recovery.

I am sorry that you are going through this. I have a lot of food allergies that keep changing. The doctor thinks it is because of gluten but tests don't confirm it.
I went totally grain free. I have to stay on a very strict gluten free and dairy free diet. I write down what I eat and keep track of how I feel after I eat it. Dairy makes me break out within a few hours of eating. Gluten is in a lot of foods. It is make up and shampoos etc. Have you looked on celiac.com? It has helped me a lot. Is there a local support group you can join? One thing that has helped me is to make very simple meals. I try not to eat processed foods and make lots of home made meals I had to go on a rotation diet for a while until I figured out what foods were causing me to not feel well.
I hope that you are able to find the answers you need and start feeling better soon.

Here is a link to some great information about gluten and other issues with the gluten type grains. You might be reacting to something else. Or you could be literally having withdrawal type symptoms from something else. Either way, sticking with gluten free will eventually make you feel much better.
https://www.youtube.com/watch?v=pNAyjFaRnjU

OK, this new DS appears to fail to highlight links. You will likely have to copy/paste that to get it to work.

Hi friends -
Thanks so much for taking the time to reply. I have definitely been tested for everything else under the sun - I feel like a human lab-rat! Everything else checks out fine. I have been careful to be really careful with the GF diet so I know I haven't been contaminated. I had thought that maybe it was my body's way of ridding itself of toxins but then I thought that going GF would make things better right away. Thanks very much for your suggestions, advice, and support - I really appreciate it. Be well!

TwoBoyz…
No matter what the result of the antibody test, it does not say whether a person has Celiac Disease or not. However the biopsies do give a reliable result. That (bioposy) is the most reliable test. The person needs to have the gene as well.
If you are still suffering, you maybe well advised to see your doctor again.
I feel I will get some unusal responses here. 
Capt

TwoBoys, sorry you are not doing too well.

1. I notice that a fair few users here say that after examining them and not finding Celiac Disease. Their doctor tells them to go on a gluten free diet. To me not a smart idea. And is to keep the patient quite by giving them some treatment. Plus some like to mess with their diet. (funny your message sounds familar to me, might have read it before? make a note of them? - might find someone who fixed the problem)`

2. So we know you do not have Celiac Disease. We also know that a gluten free diet is causing you what I would call, close to serious symptoms/problems. If not serious. Oh I am not a doctor.

3.As said, your symptoms worry me so most importanly do see your doctor again.

4. This site has other forums re gastro problems have a look there, ask for help you should get some ideas and help there. The gastro forum has messsages re different disorders and this is what you need.

5. Do go and see your doctor again.

Capt.