Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Any Ideas?

smile

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.