Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Lessions on colon


Nancie

Recommended Posts

Nancie Apprentice

They have found lessions on my colon 3 years ago and found more when I had my colonoscopy, Is this common with celiac disease ?


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, Nancie!

Celiac disease damages the villi that line the small bowel, the section of the intestines just below the stomach. The colon is on the far end. Celiac disease would not be detected by a colonoscopy but rather an endoscopy. Endoscopies enter the scope from the mouth, go down through the esophagus, the stomach and into the small bowel. Colonoscopies can't reach up that far from the other end.

Nancie Apprentice

They  thought I had 19 ployops when r they had done my colonoscopy , I went to the Cleveland clinic thinking I was to get the pollops removed when they went in to remove them they had found lessions on both sides of my colon . They biopsy the lessions and came up with the diagnosis of benign lymphatic colitis . I had another colonoscopy this June they had noticed I had more lessions . I started to read up on celiac disease because someone I know knew of a person who  had lessions on their colon and didn’t absorb nutrients as I have that issue and they were diagnosed with celiac disease I have most of the other symptoms as well , I also have diverticulitis also . 

trents Grand Master

So, you haven't yet been tested for celiac disease. Correct?

The incidence of other intestinal diseases such as Crohn's, IBS and (not sure) colitis is higher in the celiac population than in the general population. Autoimmune disorders tend to cluster.

Nancie Apprentice

I have not I emailed my digestive dr at the Cleveland clinic and requested I want to be tested. It’s very frustrating I can not find a local digestive Dr that wants to take me as a patient because they are all baffled by the lessions on my colon . 

Nancie Apprentice

I live in Ft myers Fla if anyone lives in this area that may know a Digestive Dr that won’t turn me away  please let me know . It’s hard for me to continue to see my digestive dr at the Cleveland clinic he is in Weston Fla which is two hours away I’m looking to have a local digestive Dr also .

trents Grand Master
(edited)

You can order a home celiac test kit from Imaware for about $100. You take a blood sample via finger prick and send it off. But whatever you do, don't begin the gluten free diet before all testing is complete. It would invalidate the testing.

Edited by trents

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



Celiac.com Sponsor (A8-M):



Nancie Apprentice
47 minutes ago, trents said:

You can order a home celiac test kit from Imaware for about $100. You take a blood sample via finger prick and send it off. But whatever you do, don't begin the gluten free diet before all testing is complete. It would invalidate the testing.

 

Thank you for that information do you send the test off to a lab or to your Dr?

trents Grand Master
(edited)

I think you send it back to Imaware or whoever produces the kit. There are other companies besides Imaware that offer these but Imaware is the most well known. So, I am assuming the cost of the lab work is included in the price of the kit.

Edited by trents
Nancie Apprentice

I did find a home kit the cost was only 15.00$ . I do have another question is it common to feel dizzy and off balance with celiac disease ?

trents Grand Master
2 hours ago, Nancie said:

I did find a home kit the cost was only 15.00$ . I do have another question is it common to feel dizzy and off balance with celiac disease ?

Yes, that could be a neurological manifestation of celiac disease or of NCGS. Not uncommon.

Nancie Apprentice

I had scans if my head due to the dizziness and off balance to rule out anything else .

Nancie Apprentice
30 minutes ago, Nancie said:

I had scans if my head due to the dizziness and off balance to rule out anything else .

They sent me to physical therapy because of my balance issues and I have a horrible gait when I walk 

RMJ Mentor

Here is a recent paper (2022) on the association between microscopic colitis and celiac disease.  (Lymphocytic colitis is a type of microscopic colitis). 

Association between microscopic colitis and celiac disease

Nancie Apprentice

That’s what they had diagnosed me with 2 years ago . Benign Lymphatic colitis . Is it the same as celiac ? Should I still get tested for celiac disease ? I have all the symptoms that I had read about.

Nancie Apprentice

I had just read more information so they are the same diseases ? They never really treated me they had put me on steroids but didn’t see any changes . I have experience the itchy skin dry patches on my arms and hands and legs . I do have alot of fatigue I’m allways dizzy and have had balance issues for several years and terrible gait .

trents Grand Master

No, benign lymphatic colitis is not the same as celiac disease at all. Celiac disease affects the small intestine, right below the stomach. The colon is on the other end.

RMJ Mentor

They are NOT at all the same disease.  But people with one of them are more likely to have the other.

Nancie Apprentice
19 minutes ago, RMJ said:

They are NOT at all the same disease.  But people with one of them are more likely to have the other.

So why do I have all these symptoms of celiac disease I guess my question is could it be a possibility that I should get tested even though I was diagnosed with lymphatic colitis ?

trents Grand Master
9 minutes ago, Nancie said:

So why do I have all these symptoms of celiac disease I guess my question is could it be a possibility that I should get tested even though I was diagnosed with lymphatic colitis ?

Maybe you have both. As both RMJ and myself mentioned, there is a statistical correlation between celiac disease and other bowel diseases. With your symptoms I certainly would recommend getting tested for celiac disease and I would recommend asking for a full celiac panel and not just the tTG-IGA test many doctors order.

Nancie Apprentice

What is the difference in the 2 tests ? 

trents Grand Master

A full celiac panel looks at a number of different antibodies that could be produced by celiac disease and not just one (the tTG-IGA). The tTG-IGA is considered to be the single best test for detecting the inflammation of the small bowel lining characteristic of celiac disease. It combines good sensitivity with good specificity but some people's immune response is atypical and is missed by the tTG-IGA. The inflammation can sometimes be detected by other antibody tests that the tTG-IGA misses. Many primary care docs don't know much about celiac disease and how to test for it so they order testing that is less than thorough. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

An upper GI with biopsy of the small bowel lining can also be used to check for celiac disease. It is important to be eating significant amounts of gluten for about two months leading up to the antibody testing and for at least two weeks leading up to the endoscopy/biopsy. Many make the mistake of going gluten free before testing and so invalidate the results.

Nancie Apprentice

Thank you for all the information I did email my Sr Friday requesting to be tested hopefully he will  send an order for the test . 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,573
    • Most Online (within 30 mins)
      7,748

    kerrie98
    Newest Member
    kerrie98
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
    • Scott Adams
      This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Scott Adams
      Have you tried to start a gluten-free diet since your diagnosis in 2019?
    • trents
      Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability.  We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking.  3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
×
×
  • Create New...