• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
kelly97

Celiac's & Pathology Of Crohn's?

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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. :)

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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). :)

Share this post


Link to post
Share on other sites

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

0

  • Forum Statistics

    • Total Topics
      108,925
    • Total Posts
      943,536
  • Member Statistics

    • Total Members
      67,140
    • Most Online
      3,093

    Newest Member
    Donna 63
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Nikkster, They often call the celiac testing a celiac panel.  There is also a celiac screening test they sometimes do first, the ttg.  You want to get the full celiac panel if possible.  Not everyone shows up on just the screening test.
    • Maybe get your vitamin D levels checked.  And take some K-2. K-2 is supposed to help vitamin D absorb into bones.  Oh, and skip the Dominos next time! We all make mistakes at times,.
    • I am actually trying to bulk up and body build with this disease. I go with a keto diet of fats and protein, I use vegan protein powders throughout the day. I used to use nutrakey V-Pro and now mostly use MRM Veggie Elite, blend, and do my own mixes with Naked Pea, Jarrow Pumpkin seed, MRM Sancha Inchi, and various blends from Julian Bakery pegan line. I use them in shakes with almond butter or sunflower butter sometimes using macadamia, pecan, etc. If I can get them and drink it throughout the day. I found large omelettes and quiche made with coconut flour and almond flour with leafy greens mixed in every day for breakfast works out great. I found some nut based breads (found online then started making my own in my bakery) and eat them toasted with avocado. And I always have 1 scoop pumpkin protein (great for recovery) and 1 scoop pea protein before bed. I sometimes take extra BCAAs from Jarrow to help prevent muscle break down Try adding a bit of coconut oil to everything to get in more fats.   <.< recently trying some T boosters but not seeming much from them.
      Keto Fat bombs...look them up made with nut butters, coconut, coconut oil, and protein powder versions great way to stack on the calories.
    • I'm from the UK so I can't help you on the recommendation, but  instead of canned chili have you tried making your own? It's super easy to do, far nicer and cheaper than any  pre-made  variety and you can make a big batch and freeze small portions so its always available if you need a quick filling meal? There's no reason a chili should include gluten btw, but if they're telling you that there's a high probability of cc its best not to eat there in any case!   Edit: checked their site:  https://www.skylinechili.com/special-dietary-options.php#glutenfree They're basically telling you there could be cc  
    • I live in Cincinnati. One thing we are known for is chili and a horrible football team. I was wondering if anyone had one of those gluten detectors and how they work because I would love to test them. They claim to be gluten-free and even state that in their restaurants there is a high probability for CC. I even wrote the company several times but no reply. I just had some earlier and am up with a reaction to something. I'm leaning towards the chili. Is there any good canned chili out there that will not make me sick?
  • Upcoming Events