I had my endoscopy this week and when I mentioned to the nurse I have not had gluten in 6 months, she told me I was wasting their time. She said my bloodwork was probably a false positive and that I may just be sensitive (in a very condescending tone too!). After the scope the GI doctor told me I had damage from reflux and needed to start Prilosec. He also said that my intestines is healing and not completely flat (not entirely sure what he meant by that). My husband asked him if I still had celiac and he said yes but a little gluten would be fine. I am so confused by that. Is my doctor wrong?? Either my primary care has no clue or the GI doctor is clueless because I am hearing two completely different things. Any insight? Our lives were turned upside down almost two months ago when we eradicated all gluten in any form, from our home on top of no longer eating out. Was it a waste?
No, you can learn from even bad experiences.
Your antibodies should drop on a gluten free diet, but... it takes time, and there is NO guarantee that they will drop completely in six months, especially if you are a newbie and not used to ferreting out cross contamination. False positives are rare. Damage from reflux is a symptom of celiac. Celiac auto immune reaction damages the lining of the intestines so the little points that are supposed to stick up end up going "flat." Not completely "flat" is good. If even the GI doctor after the scope and before they look at the slides for the biopsy says you have visible to the naked eye damage and that you have celiac.... you have celiac. Positive blood test and positive biopsy = standard diagnosis criteria by many. A little gluten is not "fine." Eliminating as much gluten as humanly possible from your diet is your goal, so you are exposed to as small amount of parts per million (microscopic amounts) as possible.
People vary in sensitivity. Some people can tolerate more potential of cross contamination than others, for example, they can eat something made in a facility which processed wheat or was tested to 20ppm gluten free, other people have to avoid much processed food, even if gluten free authentic, and do better with that which tests 5 ppm or less, in order to heal up. Others have to go further and get rid of gluten bearing cosmetics and toiletries, for example, I had to ban gluten containing lotion from the house, because I was getting served a glass of ice water which had been bare - handed by my spouse who had just used lotion after a bath, and there was enough residue to get me. I also got rid of shampoos and conditioners with wheat and oats, and changed to a mineral make-up, because I don't want the residue all over my skin and towels, and I fiddle with my hair a lot, and I have very, very sensitive skin. Coconut oil makes a great conditioner, if you are just now thinking "oh, no!"
Who knows what the GI doctor actually meant as it is not clear whether he meant potential cross contamination is "fine" or a small serving is "fine," either way, gluten, for you, is not "fine," anymore. Your primary care physician is correct, no gluten.
Nurse has a bad attitude and should be re educated, but I wonder how many patients this doctor has made sick, or delayed healing of, if he's telling them a little gluten is okay.