Negative Test Results, Positive Allergy Testing

[CK90]

My story is a bit convoluted, but i'm hoping that it will help someone and also give me some confirmation.

About three months ago i began feeling sick after eating, with shooting pain in my stomach that gradually worsened as the day went on to the point where i was hospitalised that night.

Since then i have seen numerous doctors and specialists and had round after round of blood tests and samples analysed. I was at first diagnosed with pancreatitis, then gastritis, then a hiatus hernia. Throughout this process i had been barely able to eat anything, as the pain would be so bad that i wasn't able to work, whereas the pain was manageable when i didn't eat. I was living off of throat lozenges and instant hot chocolate.

After a friend suggested a naturopath a few weeks ago, and i attended who prescribed foods based on the blood type diet. Being a blood type 'O' she suggested that i could not digest grains well, and i began following her recommendations. I then asked my GP to be tested for celiac. My blood work came back negative, as did an endoscopy (although only biopsied the stomach, not the small intestine), but after ingesting one piece of bread and 2 biscuits i was back to crippling stomach pain.

I then decided to go gluten free and began to feel better after a few days. I have been gluten free for 2 weeks now and my GP upon seeing the improvement said that it is possible, as i was not eating that the test could have been a false negative and to continue eating gluten free to see if i improve further (as my digestive system is quite damaged). My naturopath also did allergy testing which amongst various vitamin and mineral deficiencies revealed a strong reaction to wheat, which i think is more than enough to support my decision to follow a gluten free diet.

If anyone else has a similar story, or could give me any more information about this, i am very new to the idea of gluten-free living and any help or insight anyone could offer would be great.

The best advice i was given throughout the whole ordeal has been that despite testing, you know your body the best. Follow your instincts.

[mushroom]

Hello, and welcome to the board.

Sadly, many of us have followed much the same process in getting a diagnosis as you have. Nobody thinks to test us for celiac, and then somehow we figure it out for ourselves or someone else suggests it, and we stop eating gluten - and behold! our problems go away. THEN the medical profession decides to test us, or we demand it, but by then the antibodies have retreated from the blood in the absence of gluten and the testing is negative. Some of us are also referred for a (negative) biopsy - negative either because we have already done enough healing to invalidate the test, or because the doctor does not perform the procedure correctly.

Celiac disease is an autoimmune disease where the body starts attacking itself due to the damage gluten has done. It is possible to also have an allergy to wheat along with the celiac, but most celiacs are not allergic to wheat, just intolerant of it.

I am glad that you caught it early and are well into the healing process. To speed up healing you might try avoiding lactose in milk, cream, ice cream, as lactose requires a specific enzyme that is produced in the (usually) damaged small intestine. By avoiding all grains (and I would also avoid soy) and eating only meat, fish, vegetables, fruit, nuts, seeds, you will heal much faster. It may be that you can add some rice in later but if you feel no reason to there is no reason why you should. After you have healed lactose should not be a problem either.

Be sure to ask any specific questions you have. There are lots of people here only too glad to help out.