Inconclusive Endoscopy?

[fattycat]

I really hope I can get some advice! I'm currently living in South Korea where celiac disease is all but nonexistent. I've had food/stomach problems most of my life but really started to get sick about 10 years ago. Vitamin deficiency (resulting in hair loss!), reactive hypoglycemia, chronic loose bowels, undigested food, exhaustion, rash on cheeks that never went away, gas, bloating, unexplained weight loss and gain, etc. In 2005 I had a protein allergy chip done and it showed that I had a mild gluten intolerance and the doctor did a blood test for celiac that came back negative.

I had had loose bowel movements for about 2 years but this summer I started having green bowel movements. In October I suddenly broke out in hives over most of my body. Regular antihistamines didn

[shopgirl]

I'm wondering, could eating gluten free (a couple of cheat meals) for a month and a half have affected my results? How much damage is necessary for a diagnosis?

It absolutely could, and probably, did effect your results. People going through the testing are required to continue eating gluten daily right up until the day of the test. Going gluten-free for a week could effect your results. Your doctor was wrong. Generally someone who's been gluten-free for any length of time is put on a gluten challenge before testing to make sure their tests are accurate. If you want to be re-tested, you'd have to do at least a few weeks of gluten to get a more accurate diagnosis.

[cassP]

with your symptoms, and your "mild gluten intolerance", and your mild damage in biopsy- i would assume you have Celiac or NonCeliac Gluten Intolerance- they're both BAD if you continue to eat gluten.

it's up to you whether or not you need a diagnosis to motivate u to stay on the diet- and like above poster said- you have to be eating enough gluten before testing.

it's not well known in asia- because the diet is not very westernized- so i dont think the disease is triggered as much- but a recent study DID show that asians do have some gluten intolerance (cant remember if it was antibodies or genes tested)- but it was somewhere around 15 or 20%

continuing to eat gluten can lead to any number of autoimmune diseases and destruction of different organs... including the brain, thyroid, colon, liver, etc....

good luck & stay on top of this !

[fattycat]

I spoke with the doctor today. He said that he did a biopsy of 10 samples (not sure how spread out they were) and that there was some damage. He agreed that eating gluten free may have affected the results but he doesnt really want to do another endoscopy. He wants me to continue to take the probiotics, antacids and medication to stop loose bowels for a month and to just try not eating gluten and then eat gluten to see what happens. He said that a diagnosis of celiac isnt important. What is important is if I feel better not eating gluten or not. And then come back in a month.

I think I feel better...not 100% sure. When I eat gluten I dont feel sick right away. It seems like a day or two later I generally feel unwell for several days. Tired, headache, sore muscles, difficulty sleeping, problems concentrating, frequent urination, blood sugar issues, etc. And when I dont eat gluten I still have digestion problems unless I take the medication. When I stop the medication I basically stop digesting food. Most of my symptoms seem to be related to malabsorption. If only I instantly vomited each time I ate gluten!

[cassP]

healing while going gluten free takes time- you cannot judge every reaction & nonreaction in the first month-

it can take AT LEAST a month to normalize and not have reactions... in fact during this transitional period- you could have gluten like reactions to almost anything including water.

i hope you go gluten free.. i think the damage in the biopsies is proof enough.. but your doc is right- whether it's Celiac or NonCeliac- your body is gluten intolerant.

hope u feel better soon