How Much Damage Can Soy Do?

[Bubba's Mom]

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?

[Marilyn R]

I didn't have my biopsy until approximately 8 months after going gluten-free but was convinced that the soy intollerance was going to give me a positive biopsy. I've never picked up the results of my biopsy, but it turned out negative.

I think the surgery I had could have been prevented if a dr. had steered me in the right direction, but my situation is different than your's, and I'm no expert. For me, I went through several months of extremely difficult responses to food. Gluten, Dairy, Soy, Quinoa, gluten-free Oats, Egg Yolks (In that order.)

What worked best was a very basic diet. Root vegetables never hurt me. Legumes were okay once or twice a week. All seafood was good, except you have to watch canned tuna or salmon for trace soy. I only ate egg whites for awhile. Avoided chocolate (my favorite) for months because of soy lecithin. Soy kicked me hard where it hurts, but so did those other foods. Then I had a problem with nitrates.

On the happy side, I can now tolerate corn and dairy again, along with nitrates.

I really don't think I want to try soy again, even though I used to love eating at Thai, Vietnamese and Chinese restaurants. The more I researched, the more I learned to hate soy.

[missmellie]

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.

[Bubba's Mom]

I didn't have my biopsy until approximately 8 months after going gluten-free but was convinced that the soy intollerance was going to give me a positive biopsy. I've never picked up the results of my biopsy, but it turned out negative.

I think the surgery I had could have been prevented if a dr. had steered me in the right direction, but my situation is different than your's, and I'm no expert. For me, I went through several months of extremely difficult responses to food. Gluten, Dairy, Soy, Quinoa, gluten-free Oats, Egg Yolks (In that order.)

What worked best was a very basic diet. Root vegetables never hurt me. Legumes were okay once or twice a week. All seafood was good, except you have to watch canned tuna or salmon for trace soy. I only ate egg whites for awhile. Avoided chocolate (my favorite) for months because of soy lecithin. Soy kicked me hard where it hurts, but so did those other foods. Then I had a problem with nitrates.

On the happy side, I can now tolerate corn and dairy again, along with nitrates.

I really don't think I want to try soy again, even though I used to love eating at Thai, Vietnamese and Chinese restaurants. The more I researched, the more I learned to hate soy.

Thanks for sharing your story. Since I react so much stronger to soy than gluten , and all of the blood tests are negative for Celiac, I was wondering if soy was the problem in the first place..and I started reacting to gluten because of a damaged intestine> I know it's usually the other way around. I'm just trying to understand why I keep getting worse instead of better.

I saw a dietician shortly after my DX and asked about eating dairy with flattened vili. She said if it made foods taste better to use butter or cheese, etc. go ahead and use it. I don't usually seem to get any extra symptoms from dairy.

[Bubba's Mom]

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.

When I saw the report from my first scope I was surprised to see NSAID use as a possible cause for damage. I don't use them. That made look at foods with a high salicylic acid content. I've omitted most from my diet, and limit those that I haven't cut out entirely.

I've been on Pronix for GERD for years, and it never seemed to bother me? Whatever is going on, I found it odd that my stomach was normal in the scope 6 months ago and red and inflamed during the most recent one.

I haven't quit dairy, but don't eat much of it. I never have. I use a bit of butter on veggies, or occasionally have some cheese. I've had baked potatoes with sour cream though, and it didn't seem to digest very well.

My diet mostly consists of bananas, peeled apples, peeled pears, small amounts of berries, cooked green beans, brussel sprouts, cabbage, carrots, potatoes, sun flower seeds, brown rice, rice pasta, yams, chicken, beef, pork, turkey, occasionally bacon or ham. I was eating eggs, but they seem to bother me now, and I don't eat much lettuce any more because I can't use dressings because of the soy. I can use vinegar and olive oil, but the oil seems to bother me?

I used to be able to eat sausage, but no more...too greasy. The smell of cooking most meats makes me nauseated, so by the time they're ready to eat I don't want them. I've been cutting fats out more and more, because they just make me sick.

I was able to eat eggs until the episode with the "super eggs" last week. Hard boiled eggs were something I could make ahead and grab when I wanted one.

I've been having trouble with gallbladder pain/nausea for quite a long time. I had an ultrasound done in May 2010. It showed no stones, so after that my Dr. told me there was nothing wrong with my gallbladder. He dismissed the fact that anything other than stones could cause problems.

I don't know if my gallbladder can heal on a gluten-free diet? I would hate to have it removed if it has a chance of getting better.