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boysmom

Saw My Gi Doc Today For Results Of Biopsy

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Quick recap: I had a biopsy last month that showed esophagitis in the lower third of my esophagus, some gastritis in the antrum, and flattened duodenal folds. Biopsies were taken to test for h. pylori and celiac. Prior to the EGD I had cut back on bread drastically for about 18 mos. because it was giving me heartburn, and had been eating gluten-free for 8 weeks. I'd never heard of celiac disease until May, and at that point I was desperate to stop esophageal spasms so tried the diet knowing it might skew the results of the test. Response to the diet was dramatic.

The doctor's office had called the week after the test and told me the biopsy was negative for celiac sprue, but they never called with the results of the h. pylori tests. Today they told me that was negative too, and he showed me the results of the biopsy that said "patchy villous atrophy"

He did allow that *possibly* I had celiac disease and it had already begun to heal, but diagnosed it as a wheat allergy instead. Guess he didn't think it worth explaining that I had the same reaction to a balsamic vinegar that I didn't realize in time had barley malt flavoring. :P He said it's great when you can diagnose yourself and sent me on my way without any need for follow up with him again.

I liked that he listened and took my concerns seriously enough to run the tests, but the results confuse me. I thought ANY villous atrophy was positive for celiac? I will not be deliberately eating any gluten again! I'm debating the worth of doing stool or genetic testing because I suspect 4 of my 5 children may have symptoms related to celiac and 3 of them have already shown improvement with the switch in our diet. Because my oldest is planning to start college next fall and his choice is two states away, I'm concerned he may NEED the diagnosis to get ADA concessions in relation to his meal plan, but because we're already on the diet he may not be able to get the diagnosis. Has anyone had to deal with a child who was on a gluten-free diet for the parent's sake and faced this choice?

The help here has been priceless! Thank you all for being here and helping us through this process. It is a long and confusing road and I so appreciate the calm and helpful advice I've found here!

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he showed me the results of the biopsy that said "patchy villous atrophy"

This would indicate Celiac Disease.

He did allow that *possibly* I had celiac disease and it had already begun to heal, but diagnosed it as a wheat allergy instead.

I would say that you definately have Celiac and may have begun to heal--why in the world he would diagnose a wheat allergy with this criteria is beyond me.

You are in the right place--best of luck with the diet/lifestyle and let us know how we can help :)

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A "wheat allergy" causes a histamine response not villous atrophy! That wasn't too cool to tell you that. I would take my test results and get a second opinion IF you think you need it.

It's a good idea to get your future college student diagnosed as a few college students have had battles about the mandatory food programs at their schools. Starting that ball rolling sooner rather than later is a good idea. Colleges can sometimes move at the speed of mud. I would call his choice of school now and tell them that his ability to have his own kitchen and not be locked into the food program will decide whether he attends their school. If you are told they can acommodate him the way you wish, ask for it in writing and make sure it's a person with the power to make that promise.

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I know. My symptoms don't match up with wheat allergy at all, but they match a lot with celiac disease. :) amazing isn't it?

He told me that he has a wheat allergy and gets diarrhea and hives when he eats it, then told me in another part of the conversation that he just takes his burger off the bun to eat it...and he thinks they must mix some wheat into the burger because he can eat steak but often gets sick on his burger (removed from bun). DUH!! What doctor in this day and age doesn't realize the danger of cross contamination for allergens?? I'm sure the look of horror on my face convinced him I wasn't going to be taking that route myself. ;)

I can only assume one of two things were going on. Either he's blinded by his own condition (and willing to take a lot more risk with it than I am), or he was trying to make sure I have enough information to convince me to avoid wheat without giving me the diagnosis. Maybe he knows my insurance would give me grief if I had the diagnosis?? I will be seeing my primary doc again in another month or two in order to get a refill on my synthroid, so I'll be discussing this process with him too. He may be willing to make the diagnosis based on my dietary response in combination with these results. We'll see...

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Ask for a second opinion interpreting your results. What could it hurt?

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I know. My symptoms don't match up with wheat allergy at all, but they match a lot with celiac disease. :) amazing isn't it?

He told me that he has a wheat allergy and gets diarrhea and hives when he eats it, then told me in another part of the conversation that he just takes his burger off the bun to eat it...and he thinks they must mix some wheat into the burger because he can eat steak but often gets sick on his burger (removed from bun). DUH!! What doctor in this day and age doesn't realize the danger of cross contamination for allergens?? I'm sure the look of horror on my face convinced him I wasn't going to be taking that route myself. ;)

I can only assume one of two things were going on. Either he's blinded by his own condition (and willing to take a lot more risk with it than I am), or he was trying to make sure I have enough information to convince me to avoid wheat without giving me the diagnosis. Maybe he knows my insurance would give me grief if I had the diagnosis?? I will be seeing my primary doc again in another month or two in order to get a refill on my synthroid, so I'll be discussing this process with him too. He may be willing to make the diagnosis based on my dietary response in combination with these results. We'll see...

It sounds like your doctor is in denial about celiac himself or may not have been diagnosed yet. It is amazing how many doctors just are not informed at all about celiac. He may even at one point been tested and told he either 'doesn't have the gene' or had negative blood and/or biospy and doesn't know that both are common. Even if you don't get a diagnosis your doctor can test for the stuff he needs to test for, osteoporosis, anemias, etc.

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