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smile Apprentice
smile
Posted

Sorry to make another post, Im just trying to figure things out. Does the terminal ileum have anything to do with coeliac disease. Basically about 6 months ago I had a colonscopy to test for crohns disease. When I was given my discharge paper it said the colon was all normal and that I had biopsies taken. It also said I had mucosal erythema of terminal ileum. Now from what Ive found that is a redness/inflammation of the terminal ileum. When I got my results back from the biopsies I was told everything was normal and there was definately no crohns disease. I was never told what the mucosal erythema of terminal ileum meant. I know the terminal ileum is the end part of the small intestine. If I did have coeliac disease could that cause the inflammation of the terminal ileum and if they had biopsied it would it have shown up or would they have missed it if they were only looking for crohns?

I just want an answer to all this, Im very tempted to just start eating gluten free, even when I haven't got the blood test results back yet. Another thing I have noticed is that when I have bowel movements in most cases I have quite a bit of mucus, does this mean anything. Sorry Im not very well informed.

Thanks

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mushroom Proficient
mushroom
Posted

Sorry to make another post, Im just trying to figure things out. Does the terminal ileum have anything to do with coeliac disease. Basically about 6 months ago I had a colonscopy to test for crohns disease. When I was given my discharge paper it said the colon was all normal and that I had biopsies taken. It also said I had mucosal erythema of terminal ileum. Now from what Ive found that is a redness/inflammation of the terminal ileum. When I got my results back from the biopsies I was told everything was normal and there was definately no crohns disease. I was never told what the mucosal erythema of terminal ileum meant. I know the terminal ileum is the end part of the small intestine. If I did have coeliac disease could that cause the inflammation of the terminal ileum and if they had biopsied it would it have shown up or would they have missed it if they were only looking for crohns?

I just want an answer to all this, Im very tempted to just start eating gluten free, even when I haven't got the blood test results back yet. Another thing I have noticed is that when I have bowel movements in most cases I have quite a bit of mucus, does this mean anything. Sorry Im not very well informed.

Thanks

I confess I really know nothing about the terminal ileum. However, a quick google revealed that any problems with it are normally associated with Crohn's disease. However, one item was of interest:

https://www.celiac.com/articles/793/1/Histology-of-the-Terminal-Ileum-in-Celiac-Disease/Page1.html

The histological lesion of gluten sensitivity primarily affects the proximal small bowel. The purpose of this study was to assess whether there were features of gluten-sensitive enteropathy in biopsies taken from the terminal ileum during colonoscopy/ileoscopy.

Biopsies were assessed for the presence or absence of villous atrophy and crypt hyperplasia, and counts were made of intraepithelial lymphocytes (IELs).

Conclusions: Coeliac disease may affect the entire small bowel. Increased IEL density in the terminal ileum is associated with duodenal VA and should prompt a search for coeliac disease by serology and duodenal biopsy. Conversely, a normal IEL count does not allow the exclusion of coeliac disease with confidence.

Now, I do not know if your report mentioned anything about IEL's, but apparently problems with the terminal ileum have been associated with celiac disease.

At any rate, IMHO, it would warrant further investigation on your part to rule out any chance of celiac from your findings. Generally speaking, inflammation appears in the small intestine before the villous atrophy, so inflammation in the terminal ileum could be significant. I assume you have not had an endoscopy to check for celiac?

smile Apprentice
smile
Posted
  • Author

Thanks for the reply and info. Ive not been sent for an endoscopy. When I saw the gastro person, after ruling out crohns disease they discharged me and said I should be fine in a few months. I was also give a barium x-ray which was normal. After seeing a dietican recently they sent a letter to my gp to suggets tests fro coeliac. I saw my gp who said if my blood tests suggest it they will refer me back to the gastro person to have an endoscopy. Its just so annoying because I get the impression that no one really thinks anything is going on. But I cant help but feel something is happening. When I was tested months ago I used to get an ache in my right hand side and its started again, lots of hair loss, in between my fingers they are becoming drier and drier, with a redness too. It started on one hand and is now on both. Ive never had dry hands or anything like that. Even though Ive put weight on the scales, when I put my clothes they seem to be looser. Its pretty annoying, Im pretty much wearing the same clothes all the time, usually a fitted t-shirt and skinny jeans. Ive also noticed that my nails on my hands and feet dont grow like they used to, I hardly have to cut them anymore. There are all these changes and no one has answers for them. Sorry for the moan

Emilushka Contributor
Emilushka
Posted

The erythema just means redness (increased blood flow - likely inflammation). The terminal ileum is one of the parts of the gut that can be affected by Celiac, but seeing erythema doesn't mean that you have Celiac disease. If you can get your antibodies tested before you go gluten-free, get the blood draw done and then drop the gluten out of your diet. The problem with Celiac disease is that it affects the intestines in a spotty way, so you can get problems anywhere from your mouth to your anus and the biopsies are just a luck-of-the-draw kind of thing (and they're often negative).

smile Apprentice
smile
Posted
  • Author

Thanks for your reply, Ive had the blood tests taken a few weeks ago and am waiting for the results now. That sounds a bit bad about the test eg biopsies sometimes coming out negative due to the nature of the intestines showing damage in a spotting nature. That makes me even more want to just start a gluten free diet without even thinking of having a biospy taken. Im due to see my dietician in almost 2 weeks, so maybe I should give them a ring and say that I want to start gluten free and see how that goes.

Emilushka Contributor
Emilushka
Posted

I understand how frustrating it is. I was in the same boat just a month and a half ago ... pain in the butt! Are you scheduled for another endoscopy or colonoscopy? If you've already had the blood drawn and you're not scheduled for another diagnostic procedure, there shouldn't be a problem with going gluten-free because you've already done the work to try to diagnose this "correctly". A lot of people (most of the members of this forum, it seems) don't get diagnosed "properly" because it's hard to get the tests to catch it. My biopsies came back completely normal and I was INCREDIBLY pissed off because I knew I was still having symptoms but it felt like they were telling me it was all in my head. I started joking about being sent to the loony bin for inventing fake noxious diarrhea and drastic weight loss. Luckily, my blood test results were positive so I was able to just cut the gluten and be done with things.

Who's been managing your care? Do you see a GI doc or a family doc? (Who ordered the blood tests and scope?) That's who I'd call to notify about the gluten-free diet. Dietitians have a lot less power to order things and manage your health conditions.

smile Apprentice
smile
Posted
  • Author

I know how you feel about others thinking its all in the head, that is one of the most frustrating things. I saw a GP (not my normal one) recently and mentioned my loss of hair and tiredness. I told her that I had been given iron tablets for three months earlier on in the year and she made a comment about me obviously reading up symptoms of iron defficeny. I definately wont see her again.

I have not other tests planned. I had the tests ordered by my GP. The Gastro person discharged me a few months ago so I am not under them anymore. It was my dietician who disagreed with the IBS label and said he was concerned about my health. So sent my GP a letter saying he fears for my future health and I need to be tested for Coeliac disease. My GP seems very thorough, so hopefully she will help me get to the bottom of.

Im glad that your bloods came back positive, because if you they hadn't and your biopsy was negative Im guessing they would have said you didnt have coeliac. Now I can see why so many people are undiagnosed.

Thanks

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Emilushka Contributor
Emilushka
Posted

I'll keep my fingers crossed for you that the tests work and you're properly positive or negative. Be your own advocate with your GP, because she's the one who will be able to order more testing if you need it. Sounds like the dietitian is a good resource, but he lacks the critical MD that allows you to make things happen.

If the bloodwork comes back negative, tell your GP you're going to try a gluten-free diet for a month to see if it helps. Sometimes that's the only way you can tell that it's Celiac.

smile Apprentice
smile
Posted
  • Author

Thank you. One last question regarding DH. On my legs, inside of the shins, I get very itchy and have very small red spots. They seem to come and go, however now I seem to have the same thing on my back, they are very small, but can easily be seen, its like a rash. Most of it is on my lower back either side of my spine, then I have some more going up my back and across the shoulders. I remember this happening when I felt really bad earlier on in the year. From what Ive read DH forms like small blisters, mine dont blister, they are just red and itchy. I just wish I could see my someone when it is like it is now, but then you know by the time I get an appointment it would have eased down. Do you think this sounds like it could be due to my intake of gluten. Ive also noticed that the last two days Ive started to feel nauseous again in the evenings, something that had eased.

Emilushka Contributor
Emilushka
Posted

That sounds like it could be a skin reaction to gluten, sure. I think there's some variation when it comes to the skin manifestations. Other people in the forum probably have more experience with this so hopefully they'll jump in too.

I guess we'll know for sure when you cut out gluten and see what gets better and what doesn't!

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