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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I was diagnosed about a month and a half ago, similar to how yours went. I was having an endoscopy & colonscopy to look for cancer. While they were in there, they discovered the Celiac's by how it looked and multiple biopsies (my doctor's words to me, "You meet the gold standard for celiac's"). My doctor told me to switch to gluten-free (which, like you, I had already been eating somewhat gluten free already). At that point, he also ran a celiac panel and some other tests for celiac's. The bloodwork came back negative. I also had a capsule endoscopy 2 or 3 wks ago. That also came back showing nothing. I went back for a follow-up and now my doctor was saying that it looks like everyting is normal. My GI doctor doesn't know what to think and just shrugs his shoulders.
He also was nonchalant about follow-ups. In fact, he told me that GI doctors typically don't treat or follow patients who have celiac's. Maybe we're seeing the same doctor. LOL
I just don't know what to tell you. Because what if you really do have celiac's, yet your bloodwork, comes back negative? And your doctor is like mine, where, basically, if it's negative then more than likely it's not celiac's?
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).
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 everyone for your answers. I haven't made an appt, yet, to see my primary care doctor. Basically, because I think she's an idiot and when I'm done with all of this (my oncology stuff), I'm getting a new doctor. When I told her that I was losing all of this weight - dropping from about 120lbs to now 92lbs, she told me that I just wasn't eating enough and I needed to eat a lot more calories than I already was. When my onclogist had me see the dietician at the Cancer Ctr, she told me that I was already eating more than 40% more than I should have to eat based on my weight, height, activity level, age, etc.
And, like you all brought up, I'm learning that not all doctors are familiar with Celiac's. When I went to my neurologist last week for a follow-up for my MS, & told her about the Celiac's - she said, "So then you can't eat whey?"
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.
Hi, What type of doctor do you see for your Celiac's? The GI who diagnosed me at the University said that GI doctors don't typically see people who have Celiac's. I kind of basically took it to mean, once you're diagnosed you're on your own - or try to ask questions of your primary, instead.
Thanks everyone for replying. I'll make sure to bring up to my doctor that my diet hasn't really changed that much now that I'm "gluten-free". Then, maybe he'll see that could have effected the results of the blood tests that I had for it.
They're also working me up for cancer, so I'm really not sure if it's Celiac's or cancer with regard to my constant intermittent fevers every day. But it is interesting to find out that others with Celiac's have fevers, too.
Now, if I could get my hips to stop hurting like crazy.....
Sorry, one more thing - my Marsh Classification is 3b. Now I'm just worried with my blood work, then my GI doc is going to say I don't have Celiac's now after he diagnosed me with it. I can't help but think if I had been eating more of a gluten diet, then my bloodwork would be more positive.
Hi all, I was diagnosed 2 or 3 wks ago with Celiac's based on my biopsies and my symptoms.
The biopsies the doctor took showed duodenal mucosa with abnormal villous architecture and increased intraepithelial lymphocytes. And my colonic mucosa with crypt architectural distortion with no evidence of colitis. Essential, he says I meet the gold standard for celiac disease. And my symptoms are malabsorpsion, massive weight loss, etc.
However, I received the lab report in the mail from my doctor from the blood work that was taken after the biopsy. It says all my labs are normal, but I can contiue with a gluten-free diet to see if it helps. I realize now that I have "switched" to a gluten free diet, that my diet was already pretty much almost gluten free.
I don't meet with my GI doctor for a month. So...my question is - can I have a diagnosis of Celiac's without a positive blood test, but with positive biopsies? I'm not one of the ones that has IgA deficiency. Does anyone else fall into this category?
On a side note, does anyone else with Celiac's experience continuous intermitent fevers thru-out the day for months and months (I'm going on over a year now)?
My dietician was just talking to me this last week about vitamins. Because of malabsorpsion, she says we need fat soluble vitamins delivered in a water soluble way. She was going to send me either info about them or a prescription for them. I'm not for sure which. Maybe you should talk to your doctor about them?
Thanks Diana, Rose, & Paul. And thanks, Paul, for posting all of those websites that I can go to do research. I'm definitely that kind of person. I always want to know everything I can about my disease.
And Rose, I sent you a personal message - at least I think I did - not 100% for sure how everything works on this particular forum just yet.
I made a wallet size card that I can take with me to the grocery store to look for ingredients that I'm not allowed to have - not just the basics ones like wheat, barley, rye, but the other stuff like modified food starch, dextrin, maltodextrin, etc.
I'm still wondering if Celiac's causes reactive / enlarged mesenteric lymph nodes or stranding...
Hi All, I was diagnosed last Monday with Celiac Disease. My oncologist sent me to a GI doctor to do further investigation, so I was double scoped (looking for tumors). The biopsies the doctor took showed duodenal mucosa with abnormal villous architecture and increased intraepithelial lymphocytes. And my colonic mucosa with crypt architectural distortion with no evidence of colitis. Essential, he says I meet the gold standard for celiac disease. My oncologist is sending me for another CT & I also have to do a capsule camera swallow test.
I'm just worried. I've lost 25% of my body weight and continuing to go down. I currently only weigh 93lbs. They say I have malabsorpsion. I'm currently taking pancreatic enzymes since May. And just switched a week ago to gluen-free. I've been seeing an oncologist since May - my ct scan in Apr showed multiple reactive mesenteric lymph nodes with stranding, and hypoattenuated lesions/cysts on my liver. And I was diagnosed with MS a couple of yrs ago. I have constant fatigue with off and on fevers and all sorts of other symptoms.
I just can't help but wonder if all of this is related.
Does anyone else have mesenteric lymph nodes reactive or enlarged from Celiac Disease? Or have stranding in their mesentery from it? Not sure if it's related to the probable cancer or if Celiac's could cause it. And not sure how long I've had Celiac's so...as I've read - it could cause intestinal cancers?