We Had A Scope And Biopsy....now What?

[crstnol]

My almost 18 month old daughter had a scope and biopsy done last Thursday. She has multiple food intolerances and has been dx failure to thrive, has borderline anemia and had a celiac blood panel done and the only thing that came back abnormal was the glaiden antibody IgG (it was 94). Anyways, GI said the scope showed no signs of celiac what-so-ever. What it did show was a dozen or more clusters of ulcers. Yesterday he called me and said the biopsy results were completely normal, so he is going to talk to another pathologist and show them the pictures of her stomach with all the ulcers in it to see if they can figure out what is going on. Meanwhile, her and I went wheat free last Thursday (I breast feed her) and so far, I don't see much of a difference in her. We added in spelt and have been shopping for glutten free items (although I'm not sure we've gotten all the derivatives out yet) and Tuesday she had mucousy stools with noticable amounts of blood. She's still happy and sleeping at night so the GI said not to worry about it right now. I'm so confused! Could she have celiac and have a negative biopsy? And can celiac cause ulcers? The other thing I just realized is that rice milk has wheat glutten in it?? I've tried giving her rice milk to drink and she breaks out in a terrible diaper rash every time. Her ped said that the glaiden antibody being high indicated "a severe wheat allergy" although her RAST testing came out negative for all the big 8 allergens--so I'm wondering if maybe it's the wheat in the rice milk that she's reacting to. Is rice well tolerated for most celiacs? The other one she reacts to every time is oats--we've never really tried barley or rye.

Anyone have any insights? I would greatly appricate any help!

Christy

Lainey 10/5/04

[Nancym]

Just a suggestion but until you identify exactly what she is sensitive to, can you keep her on a very simple diet of fruits, veggies and meats? I'd avoid all grains and beans and nuts and dairy, including soy, rice and corn. I think a lot of us are sensitive to mulitple things and it takes a really minimalistic diet to eliminate them all, at first.

[ravenwoodglass]

My almost 18 month old daughter had a scope and biopsy done last Thursday. She has multiple food intolerances and has been dx failure to thrive, has borderline anemia and had a celiac blood panel done and the only thing that came back abnormal was the glaiden antibody IgG (it was 94). Anyways, GI said the scope showed no signs of celiac what-so-ever. What it did show was a dozen or more clusters of ulcers. Yesterday he called me and said the biopsy results were completely normal, so he is going to talk to another pathologist and show them the pictures of her stomach with all the ulcers in it to see if they can figure out what is going on. Meanwhile, her and I went wheat free last Thursday (I breast feed her) and so far, I don't see much of a difference in her. We added in spelt and have been shopping for glutten free items (although I'm not sure we've gotten all the derivatives out yet) and Tuesday she had mucousy stools with noticable amounts of blood. She's still happy and sleeping at night so the GI said not to worry about it right now. I'm so confused! Could she have celiac and have a negative biopsy? And can celiac cause ulcers? The other thing I just realized is that rice milk has wheat glutten in it?? I've tried giving her rice milk to drink and she breaks out in a terrible diaper rash every time. Her ped said that the glaiden antibody being high indicated "a severe wheat allergy" although her RAST testing came out negative for all the big 8 allergens--so I'm wondering if maybe it's the wheat in the rice milk that she's reacting to. Is rice well tolerated for most celiacs? The other one she reacts to every time is oats--we've never really tried barley or rye.

Anyone have any insights? I would greatly appricate any help!

Christy

Lainey 10/5/04

Celiac can cause ulcers, it did in both my kids. You can have a false negative on the biopsy and you can also have changes that are really preceliac changes that doctors don't always recognise. Also please be sure to check all the different names for wheat. Spelt is an ancient form of wheat and is not gluten free. Rice is well tolerated but barley and oats are a no no. Please also be sure to look for malt in the ingredients that is not safe either. Some thing called buckwheat makes a great warm cereal and is actually not related to wheat at all, if she likes cream of wheat that might be a good one to try. I would get the phone numbers off of any product I used for her for awhile and call the company to make sure it is gluten-free.

[mouse]

Most rice milk is gluten free, but NOT all. I use Pacific. Avoid Oats because there is a big problem with cross-contamination. No barley, rye or spelt. It is so hard to watch your child be sick.

[crstnol]

Just a suggestion but until you identify exactly what she is sensitive to, can you keep her on a very simple diet of fruits, veggies and meats? I'd avoid all grains and beans and nuts and dairy, including soy, rice and corn. I think a lot of us are sensitive to mulitple things and it takes a really minimalistic diet to eliminate them all, at first.

Thank you for responding. I should tell you what we are eating. Chicken, Beef, Carrots, Black beans, Grean Beans, Potatoes, Oranges, Peaches, Pears, Bananas, Rice and Spelt. That's it for both of us. Now, about once a week I drink about 1/2 of a can of pop just to stay sane, but that's it. We have tried several other foods, but they always end in a reaction of some sort. The last time we tried Allementum (a milk based hypo-allergenic formula) she had about 2 or 3 ounces in 3 bottles one day and the next day had blood in her stools--almost as if she was having a period. So we still havn't found any fluids that she can handle.

I'm just frustrated with the drs. and hoping to try to find some insight as what may be going on with her.

Thanks,

Christy

So, spelt is not OK? I could have sworn it was in the store as "glutten free" I'll have to look at it again when I get home. So is there any "bread" products that are safe?

[Guest nini]

if her antibodies were elevated, she has Celiac, even if the biopsy was negative. The biopsy can never ever completely rule it out, it can only confirm it. Dr.s that cling to the outdated dangerous methodology of relying on the biopsy to diagnose celiac are missing many many people in the early stages of the disease. Tests are especially unreliable in children, (if they are negative) so the fact that she did show elevated antibodies is a huge indicator of Celiac.

Spelt is absolutely NOT SAFE. There are companies (like Kinnikinick) that make wonderful gluten-free bread and other baked goods.

My daughter was dx with all the things you described yet was not tested for Celiac until I was dx'ed with it when she was 3. The tests they did on her were not the correct tests and hers were "negative" and the Dr. refused to explore celiac any further and said that she JUST had IBS and that I needed to feed her more whole wheat. Never mind the fact that when she ate anything with wheat she broke out in hives all over her body (what was it doing to her insides?)

I have a huge file of lists of safe foods and menus and so on for newbies if you would like it, just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit"

[Rachel--24]

Just wanted to reitterate whats already been said. Spelt is NOT gluten-free and should not be eaten on a gluten free diet. Her blood test was positive so she's either Celiac or gluten intolerant....either way the treatment is the same. Gluten Intolerance is not an allergy so it will not show up in allergy tests...which is why hers was negative for wheat. Celiac or intolerance does not produce the same immune response that an allergy causes.

[Jen H]

Rice bread is safe. Whole Foods makes some good ones and I hear Kinnickinick does too (haven't tried them yet). I agree with sticking to a very simple diet until you know more-fruits, veggies, plain meats. Let us know if you have more questions.

[crstnol]

Thank you all so much! My understanding (from someone on this board) was that the glaiden antibody IgG was not a definate indicator of celiac and that if her glaiden IgA had been positive, then that would have been a positive celiac result. I am new to all of this, so I don't know. I went home yesterday and read the spelt bread package and it said "a wheat alternative" I will stop giving it to her and eating it myself. I did find the Kinn........??? glutten free bread, so I bought a loaf of that and we'll give it a try. What do you think of doing the entrolab tests? I am considering ordering that test to see if it would show anything.

Thanks again!

Christy