I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.
My heart still feels weird too.
Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils.
My GI will probably not see me for a week or two, my primary care put me on sucralfate.
As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.
Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August.
Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable. So to be err on the side of caution I think you should assume you have celiac disease. Your doctor should not assume you don't have it either since the challenge was not completed. He has no proof that you don't have celiac disease. He does have evidence that you have negative reactions to eating gluten though.
Hi Ironic Truth,
Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago . I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse.
My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself.
I was gluten-free for 3 1/2 years and improving. Then I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this. Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it.
I did see one abstract, I can't get my hands on the full article as you stated their is a link:
Dig Dis Sci. 2005 Jan;50(1):126-9.
Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus).
Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M
So I will pursue the path of monitoring the Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums.
Good luck with you Boyfriend he is lucky to have you looking out for him.
There is a program called a 504 plan that some schools will follow if you get one approved. It helps the school identify proper ways to deal with a child's particular needs. Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it. I suggest you talk to the school and ask them about it. Tell them the situation with the kid and about the stress he would need to go through to get diagnosed. They may be willing to work with you without a formal diagnosis. I am not saying you absolutely have to have a 504 plan for him. School districts vary and some may be more accommodating than others. A 504 plan may give you certain rights, but I am no expert on them.
The gluten challenge is 12 weeks of eating gluten for blood tests. The payback for being formally diagnosed is questionable IMHO. Treatment is the same regardless, eating gluten-free for life. One thing to be aware of is that celiac disease has a genetic factor. So he got the gene from one of the parents. Anyone else in the family could have celiac develop at some point. So testing every couple years for all family members is a good idea.
Welcome to the forum!