6 replies to this topic

[kelly97]

Hi everyone, I was diagnosed with Celiac's maybe a month and a half ago. When I was speaking with my GI doctor yesterday, he said that I had something like crypt architecture distortion in my colonic mucosa. I asked if that was Celiac's related and he told me, "No." And that it's typically seen in people with inflammatory bowel disease or Crohn's.

Does anyone else on here, who has Celiac's, have this crypt distortion in their colonic mucosa? It's basically like I'm in between diseases - because it's not an extremely strong pathology presentation for either - although pathology & symptoms for both.

He just shrugged his shoulders and said that it's all autoimmune, so he doesn't know - anything can happen.

Thanks,
Kelly

[nvsmom]

I don't know... I know celiac can destroy the crypts in your small intestine but I don't think damage is done to the large intestine too. I'm sure others will know more....

Best wishes.

[IrishHeart]

Not sure why a GI does not know the distinction between Crohn's and Celiac disease ( ) but if he suspects Crohn's or ulcerative colitis in addition to Celiac, then he should do the appropriate tests for it.

The first thing my new GI doctor did was make sure I did not have those 2 diseases (they run in my family) and look to see if I had evidence of GI tract cancer.

You have several variables going on --from what I can see
in your other posts.

Villous atrophy can occur for various reasons besides celiac and
People can be positive on biopsy and negative on blood work and still have celiac.

You are also dealing with MS --which may or may not be the case. Some people are DXed with MS if white matter lesions on the brain are visible on MRIs or for presentation of neurological symptoms --only to have those issues resolve once gluten free. MS, lupus, ankylosing spondyloarthropy, fibromyalgia, etc.---I heard all these words, too --yet, I have none of those diseases.

But I had enough joint/bone/tissue pain, parasthesia, ataxia and brain/nervous system involvement to confuse them all.

Maybe you could seek a second opinion for better follow up care?

[kelly97]

Yeah, I don't understand why a GI doctor wouldn't know what to do and tell me what I have 100% for sure. And why he would tell me that they don't typically treat patients with Celiac's when the Univ of Colorado Hospital states on their webpage why you should go there - because of their expertise in diagnosing and treating patients with Celiac's. They're the ones that are supposed to be the "experts" in this. Makes me say, "Hmmmm..." Perhaps he didn't like my Golden Gate Bridge t-shirt I was wearing.

With the MS, they're pretty sure it really is MS. I have lesions in my spine and brain and T1 black holes in my brain. My neuro at the time said that, typically, lesions in your spine are from one of 3 things - a tumor, transverse myelitis, or MS. Although, I also have a lot of joint, bone, tisse pain, as well.

I'm not sure who to see next - I'm on the hunt to find a good doctor in all fields - neurology, internal medicine, oncology, and gastroenterology.
Both of my parents died very young from cancer and digestive issues. And it's because they were both kept being told by doctors that nothing was wrong.

Thanks for your post.

[IrishHeart]

My friend and one cousin also suffer from MS, so I know the battle you deal with on a daily basis. I should tell you that my friend went grain free, sugar free 25 years ago (long before any of us heard the words "gluten free") and she has managed to avoid a wheelchair and even ran the Boston Marathon a few years back. She is truly inspiring. My cousin has not been as fortunate and his symptoms have progressed. She and I speculate she was probably a celiac and inadvertently may have stopped the progression of symptoms by adopting a grain free diet. Who knows? Her docs treat her with interferon and remains remarkably mobile.

Your family history is significant and my deepest sympathy on the loss of your parents. We are sure my father died from UNDXED celiac and my Mom went gluten-free (at age 85 ) and feels really well for the first time in her life.

Kelly, you have a mixed bag of AI diseases going on and you do deserve a team of doctors to help you.

You could call the local support groups (celiac disease and MS) and ask what doctor serves on their advisory board and/or you can post in the Doctors section and ask "need good GI doctor in...."put the name of the largest local city near you.

I did that myself and Kim answered me and I found my GREAT GI doc and I have since sent 7 more people to him.

Good luck, hon and keep us posted.

[plumbago]

Hi,

I'm a little bit confused about your Celiac diagnosis. Are you saying you are not sure now that you have celiac disease? How was the diagnosis arrived at? By endoscopy? If so, there is usually a lab technician who reports the findings and gives his or her opinion on all the photos/images, quite separate and apart from that of the dr. Do you have a copy of your endoscopy and report?

My colon looked fine when I had a colonoscopy, pre-Celiac diagnosis.

Good luck on everything.
Plumbago

[kelly97]

Thanks everyone.
Yes, I had an endoscopy & colonoscopy looking for cancer tumors. They also discovered by biopsies & how it looked that I have Celiac's. The report said something like duodenal mucosa with abnormal villous architecture & increased intraepithelial lymphocytes. And with my colon, something like colonic mucosa with crypt architectural distortion.

When I went in to see him, he said I meet the gold standard for Celiac's then wanted to do some serology to see if I test positive for it. The labs came back negative. However, once I switched to gluten free, I realized I was already pretty much eating gluten free already.

I just went in for a follow-up visit to discuss my labs & how my gluten free diet was going. He came into the office & said that everything looks normal. Then I reminded him that he told me last time that I met the "gold standard" for Celiac's - then he looked confused & looked at my paperwork. Then he said, but my labs are normal. Then, actually, I was the one who asked him about the crypt, and he said there wasn't anything wrong with my crypt. I told him that I read it in my report. He looked confused again & read back thru the pathology report & agreed, that, yes, I do have colonic mucosa crypt architectural distortion (this guy is starting to sound not so smart to me).

Anyways, He just shrugged his shoulders & said that he didn't know that they're all AI, so anything can happen. Then said to keep eating gluten free then he'll re-run my labs. I asked, why re-run them when they're already showing normal? He said just to make sure I'm continuing to eat gluten free.

Thanks to this forum, after I left, I remembered someone talking about a gluten challenge. I called the doctor's office & asked if I could do this. They called yesterday - so as of right now, I'm on a gluten challenge for 4 wks, then he'll re-test me & do a HLA gene test - however, I have family members with Celiac's, so I'm sure I'll pass it.
Not sure what he'll say if my labs are negative again. (Sorry for the long post - I'll try not to do this in the future).

IrishHeart, thanks for the kind words about my parents & my MS (actually, I have an IrishHeart as well).