3 replies to this topic

[ksimpson]

After 14 years of illness - anxiety/depression, severe fatigue, bloating/GI disturbance, etc. I decided to try a gluten-free diet prompted by a newspaper article on Celiac Disease. Without doubt, this has been the most significant development over the last 14 years. There was a very significant improvement in the GI symptoms after a couple of days; after a week, I had much more energy; and my mood has also improved.

This prompted me to call my doctor and discuss the findings. As I have been overweight (weight went from 168 to 264lbs over the last 14 years), he told me that I wouldn't be a classic celiac, but suggested that I get some bloods done to check for antibodies. I had been on the gluten-free diet for two weeks when the bloods were done.

Got the results today and they were negative (don’t' have the exact numbers). My doc felt that being gluten-free for two weeks before the diet wouldn't have impacted the results. I also had a scope done about two years ago to check out the GI problems. I was diagnosed with a hiatus hernia at that time. The GI doc visually checked my duodenum and said it was normal. No biopsy was done.

I have also reintroduced some gluten over the past two weeks and got the old symptoms back - especially bloating and severe wind. I have no doubt that gluten is causing me a problem even if it's not the answer to all my health issues. My doc accepts that I may have a problem with gluten and should stay on the gluten-free diet if I feel better, but says that there is no conclusive evidence that I'm celiac and should not be concerned about coming off the gluten-free diet if I get bored with it.

Where to now? I'll stay gluten-free as I am definitely feeling better. However, it would have been better to get a definite diagnosis.

[CarolynM]

I agree - a definite diagnosis would be nice - for my daughter too. But feeling better is even nicer, if gluten-free is doing that for you as it is my daughter, continue - diagnosis or not.

[GEF]

See if you can get the exact results from your tests, they might be of some help. It's important to know which ones were run, as there are many. Also, some show negative on their blood tests, but when given a biopsy, show positive... that is not uncommon. Some never show positive, but improve on the diet (there are many in that situation). Being on a gluten-free diet can alter your test results, so that's important to know. It's great to hear that you're feeling better!!

Gretchen

[tarnalberry]

I agree with getting the exact test results. "Negative" is not the hard and fast interpretation that you'd think it is. Two doctors have disagreed on my test results in particular, but I go by how I feel on the diet. (My allergist didn't want to believe that only having a slightly elevated anti-reticulin IgG could indicate gluten-intolerance.) But I also had been gluten-free for two weeks before my blood test, and - quite frankly - if you didn't have much damage when you had your 'scope, you may have healed fast enough that the antibodies weren't escaping your digestive tract as well as they had in the past.