I got a DX of Celiac in late June. My blood test was negative, but an endoscope showed severe villi damage, along with ulceration in my duodenum.
After my scope the GI said she suspected Celiac disease. The biopsy seemed to confirm that, but also said "findings show architectural features characteristic of Celiac disease, but neturophils appear increased which raises other differentials including peptic duodenitis/NSAID injury, Crohn's disease, and less liklely Helicobacter pylori infection.
Immunostaining for Helicobacter Pylori is underway.(this came back negative)
Microscopic findings: serial sections show fragments of small bowel with flattening of villi. There are scattered intraepithelial lymphocytes within the surface epithelium as well as neutrophils. Lamina propria is expanded by inflamatory cells and contains a mixture of plasma cells, lymphocytes, and scattered eosinophils. Scattered neutrophils are seen and appear more numerous in many foci.
I immediately went gluten-free, but didn't start to feel better. I have I found I was reacting to soy more and more. At first just to soy flours, but now to soy lethicin, soy oil, tocopherol in vitamins and supplements etc.
I've been trying to be vigilant about not consuming soy or gluten, but my health has continued to worsen. I am still losing weight.
Most recently I reacted to an EggLand's Best egg. I looked them up online after eating one hard-boiled and vomiting it up a short while later, and found these "super nutricious" eggs come from chickens fed a diet very high in soy.
Six months gluten-free and I went to a new GI. He ran a HIDA test, the genetic blood test, and did another scope. He observed that my stomach was red and my intestines had scalloping. He said the biopsy would tell more.
I still have severe nausea, break out into a sweat 2 hours after eating, pain in my upper right quadrant, no appetite, my vitamin/mineral levels are still dropping even though I'm supplementing.
I called to find out the results of my recent tests and was told the gene test came back negative. MY HIDA said my function was 30%(the PA said this is the low end of normal and I may want to consult a surgeon to have my gallbladder removed) The biopsy showed moderate to severe villi flattening.
Since I seem to be reacting to soy so strongly I'm wondering if the villi flattening could be caused by soy rather than gluten?
I was told the Dr. would be out of the office and won't be back until next week. So it will be while until he reviews my tests. I don't know what the next step should be?
Frustrating, isn't it? You do what you think you're supposed to do, but don't start feeling better. So sorry for your troubles.
Several questions come to mind. (My job is typing up the results of gastrointestinal biopsies. I am NOT a doctor in any way, shape, or form.) NSAIDS - Do you use them? They can cause LOTS of damage. I have never seen soy usage as a diagnosed cause of villous damage. However, once the intestines are inflamed and damaged, we can react to lots of different things. Are you still using dairy? Many of us cannot tolerate dairy, or eggs, or soy, in addition to the gluten intolerance. Do you have GERD? Drugs to treat it can cause damage. I, too, would wonder about your gallbladder since your pain is UR quadrant.
What are you eating while you wait for the results? If the current problem is your gallbladder, you might feel better if you stay away from fats. I'm sorry you're having such a hard time.