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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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    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. The vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually.
    • Welcome to the board. Celiac is not a death sentence by any means. I was undiagnosed from age 4 to age 46. Words can not describe the hell of the last 15 years before I was finally diagnosed. I am alive and healthier than I have ever been. There are others who also went years and are now doing well. There are some who had complications of cuorse but not everyone does. Thankfully it sounds like your doctors have found this relatively early. You should recover in time. Do be sure to read that Newbie thread and if you can get the others you live with to read it also. You can live safely in a mixed house but you to have to take precautions to be safe. As the others stated you do need to get back on gluten until all celiac related testing is done.  You don't have to eat a lot but if your going to get biopsies done you do have to have some daily. Most of all try to relax. Having celiac does take some getting used to but you will be okay.
    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
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