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Ulcers In Ileum - Anyone Have This With celiac disease?
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I just had upper and lower scopes yesterday. Lower is all fine. Many biopsies were taken to look for celiac (won't know for two whole weeks). I have all the symptoms, plain as day. AND, they found ulcers in the ileum (the lowest part of the small intestine). I've been trying to research causes for ulcers in that area and the only thing I seem to find is Crohn's Disease. Doctor said he biopsied the ulcers.

In reading about Crohn's it seems to say a common symptom is pain, sometimes severe. I don't get pain, I get bloating and all that nastiness but not what you would call pain. I don't get an episodic type of thing either, I've been getting steadily worse over several years. First it was very low ferritin and zinc levels. The iron only came up to the bottom of normal with iron supplementation. After 3 years of supplementation the zinc came to a normal level. But in the meantime the gastro symptoms associated with celiac began and have gotten steadily worse. I understand that Crohn's is of a more 'comes and goes' sort of nature and doesn't get steadily and consistently worse, but I may be wrong on that.

I did read a research study that says people with Crohn's have a high incidence of celiac as well.

Major question if anyone can help me: are there ulcers of the ileum with celiac? Are there benign ulcers of the ileum with celiac disease? I know there are nasty ulcerations that mean the thing as already progessed so far that it is refractory celiac and it is a deadly cancer. Err I don't want that!

I have gone gluten free starting today. I haven't in the past. No matter what they tell me I am going gluten free because it makes perfect sense to me to do that. My blood work was positive for the less good marker (IgG I think, can't rememer) but not for the good marker, but I know and the doctor agreed that those tests aren't very reliable. He's a celiac specialist.

Does anyone know any other causes of ulcers in the ileum?

Any help or information would be most appreciated. I've got to get myself through 2 weeks, the only thing that feels really positive is going gluten free now. The doctor told me to have 4 servings of wheat products a day for 2 weeks prior to the tests and I definitely got worse.

thank you.

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Can anyone shed any light on ulcers in the ileum and celiac? I seem to read, if I'm understanding correctly, that there are sometimes benign ulcers associated with celiac called benign ulcerative jejunitis. Again, the diagnosis of celiac isn't in yet, I'm just trying to figure out what's going on with me.

Any knowledge on this at all? Thank you.

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Ask your doctor if they are going to use the biopsy's to check for eosinophilic gastroenteritis. I had them along with some in my stomach and I have EG positively confirmed by the biopsy's. They don't always look for it because its fairly rare.

Susan

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This probably doesn't help, but with me they discovered Duodenal ulcers ( the front end) which the doctor believed were caused by overuse of Advil and Alleve to counteract the pain I was in all the time. They biospsied them to make sure, and then told me to use tylenol instead.

Elonwy

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Not the same, but I was diagnosed with a duodenal ulcer (endoscopy) about 20 yrs before I was diagnosed with Celiac (endoscopy). In retrospect, I wonder if the duodenal ulcer could have been caused by damage/inflammation caused by the Celiac....I haven't researched, just wondering. I've suffered GI problems most of my life, along with arrhythmia, and a host of other problems that can point to Celiac. Gee.

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Thanks everybody. Yes, deodenal ulcers are a totally different thing. I've hardly ever used NSAID's in my life and haven't had them at all for a few years.

Pixiegirl - does eosinophilic gastroenteritis cause ulcers in the ileum?

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Depending where the eosinophil cells are it can cause problems almost anywhere including in other organs. Eosinophil cells are often related to allergies... so if they find them they start tons of allergy testing. I actually had ulcer like problems all thru out my stomach and small and large intestine. Prior to getting the results back from pathology my GI said you have a lot of ulcers in there but they are different looking... none were bleeding, I saw the pictures of them that were taken they certainly looked raw and like other pix of ulcers I've seen.

A lot of people get the eosinophil cells in their esosophigus (wow did i fracture that spelling), so they can turn up almost anywhere. I hope they test for them, again its not always done because its fairly a rare condition but sadly becoming more and more common, they are finding out that often people that were originally diagnosed with other stuff like ulcers or IBS have guts rich with eosinophillic cells. (thats how my entire gut was described - rich in the cells). Its probably not what you have going on but since they have the tissue to test be sure that they do test for them.

Let us know how it turns out.

Susan

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Well I heard from my doctor and he got the reports back from the small bowel biopsies which show no villous atrophy. I asked him about the ulcers in the ileum that the doctor doing the scopes found and he apparently had no knowledge of that but said all biopsies found in the small bowel came back normal. I asked why the doctor had told me that and he guesses that what he saw macroscopically didn't bear itself out microscopically. Wish the doc doing the scopes had told me it doesn't mean anything yet. I was really afraid I had Crohn's. They found some gastritis in my stomach.

So I have been so excited this wasn't Crohn's disease I haven't even thought about what to make of all my celiac symptoms now except that I'm strictly gluten free. I see my doctor on the 27th to find out "where we go from here" as he said.

I think I'll start a new thread to ask for advice as I'm afraid this topic might not be relevant enough. Thanks for being there with me!

Holly

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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