Answers Via Upper Endoscopy?

[JenHarris]

I had an upper endoscopy today and had some very interesting findings for someone who is just, 'gluten-intolerant' so I'm actually hoping the biopsies show I'm positive for Celiac despite negative IGA... or at least that it leads to some diagnosis other than 'IBS'.

Here's what the official report said and the doctor's comments to me.

I had grade A esophagitis (esophageal damage from reflux), gastric mucosal abnormality characterized by erythema (he said there were lots of small ulcerated spots on the lower half of my stomach) and finally, erythematous duodenopathy (inflammation of the small bowel). All of these spots were biopsied. He is very intrigued considering how severe my reactions to gluten seem to be. He has told me I'm one of the most severely reactive 'gluten sensitives' he has seen if I'm not celiac.

Results from the biopsies should be back next week. Anybody else have these findings at your endoscopy???

[ravenwoodglass]

Those are not unusual findings for us. Since you are done with testing I would go strictly gluten free. It doesn't matter whether you are 'gluten intolerant' or celiac the need to strictly avoid gluten are the same whichever label you get.

[JenHarris]

Thanks. I am back to a gluten free diet today. My reactions have been severe enough that I'm trying to find airtight containers for flours, I have my own peanut butter jar, I don't use butter, or the toaster and I've sorted my cabinets by gluten-free and gluten-y foods.

I now suspect my son might be sensitive as well. He starts blood work next week. I'm a little scared if he has it. He has Cystic Fibrosis and Short Bowel Syndrome already and any other damaging diseases to his small bowel could cause major damage beyond the diseases he has already. :-/ Due to the Short Bowel, he already has problems with sugar absorption and can't have more than 5-7 grams of sugar per serving. Somehow he's managing to stay at the 50th percentile for weight, but I really don't know how long that's going to last if he is gluten intolerant or has Celiac. I guess it's good that we'll know now rather than later and hopefully we can prevent damage if he does have celiac.

[ravenwoodglass]

Thanks. I am back to a gluten free diet today. My reactions have been severe enough that I'm trying to find airtight containers for flours, I have my own peanut butter jar, I don't use butter, or the toaster and I've sorted my cabinets by gluten-free and gluten-y foods.

I now suspect my son might be sensitive as well. He starts blood work next week. I'm a little scared if he has it. He has Cystic Fibrosis and Short Bowel Syndrome already and any other damaging diseases to his small bowel could cause major damage beyond the diseases he has already. :-/ Due to the Short Bowel, he already has problems with sugar absorption and can't have more than 5-7 grams of sugar per serving. Somehow he's managing to stay at the 50th percentile for weight, but I really don't know how long that's going to last if he is gluten intolerant or has Celiac. I guess it's good that we'll know now rather than later and hopefully we can prevent damage if he does have celiac.

Sorry to hear your son has such issues already. If he does also have celiac once he is on the diet he that will stop any damage the celiac or gluten intolerance would contribute to. It would be a good idea to have him on the diet even if his test results are negative since false negatives are not uncommon and it will help you avoid CC issues also.

Having airtight containers for flour isn't a bad idea but do be aware that when you use flour for baking it can remain airborne for 24 to 48 hours. A better idea is not to have any gluten flour baking in the house at all. If gluten eaters have to have cakes and bread etc it is better to have them brought in already prepared.