Lessions on colon

[Nancie]

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

[trents]

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]

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]

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]

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]

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]

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 August 14, 2022 by trents

[Nancie]

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]

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 August 14, 2022 by trents

[Nancie]

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]

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]

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

[Nancie]

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]

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]

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]

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]

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]

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

[Nancie]

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]

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]

What is the difference in the 2 tests ? 

[trents]

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]

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 .