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 think that you are doing all you can by going gluten free now, and it`s very wise to do so. It is certainly highly probable that you have celiac so I would assume that at this point, even if you do the endo later for confirmation. Speak to your doctor about nutritional deficiencies that are possible because of this and they can test your levels to see where you are. And to be quite honest, I believe that eating gluten free is probably better for everyone, regardless of celiac, so even if it turns out that you don't have it, it can't hurt.
Just wondering, since the blood tests don't seem to me to be a great detector of celiac (of course this is just my impression). How likely are they to be useful for kids? I decided after my ongoing saga to go ahead and test my boys. They are doing the TTG-IgA and IgG, as the other tests you all reference don't seem to be available here.
Well, I'm in Canada so the health insurance aspect doesn't apply to me. But as for life insurance or disability etc, that could be a real burden or problem. Imagine your kids are grown, start a family and have problems obtaining a mortgage because they don't qualify for mortgage insurance. Or can't get basic life insurance coverage to protect their family. All because they tested positive for the genes, not the disease. Crazy.
Gemini, everything you said is exactly how I feel. I already told my GI that IBS is just a big catch-all for "I don't know what's wrong with you". I don't understand that the can obviously see something in there that shouldn't be there and they just dismiss it. I mean if scalloping isn't supposed to be there, doesn't it warrant an explanation as to why it's there? Why do they think it isn't an issue??
I'm in Canada so insurance isn't involved. The paper I have says "Final pathology report". I have no idea if there are other reports prior to that. This one does indicate the number of biopsies (11 of one section and 5 of the other) and the size range, and also what they were sent in. But nothing other than that. What do you mean "how they are presented"? Do you think there is some other report that is more detailed? Because my doctor doesn't have that.
Do you think I'm allowed to request that? Would another doctor or pathologist be able to review that and come to a different conclusion?
I was speaking to a pediatrician today about my never-ending celiac saga. Although my endo showed some evidence, biopsy was negative. I explained that my real concern is for my kids and this is what worries me. She advised me to go and get gene tests to at least see if I have those.
But what really surprised me was that she told me NOT to get my kids gene tested. She said that their future would be seriously affected by a positive gene test regardles of whether they were diagnosed with celiac or not. She said just the fact that they had the genes would mean getting any kind of life, medical, mortgage insurance would be next to impossible. She actually said she wished more doctors would explain that to patients.
So I'm wondering, is this true? Have any of you experienced this?
It really made me reconsider some things. It's hard to believe you would have to choose between your health or uninsurability.
I doubt they will do any procedure that involves sedation on a sick child. My son had his adenoids removed and tube inserted in his ears several years ago, and we had to re-schedule the morning of the operation (we were already admitted and he was in a gown on the bed) because he had a bit of congestion from a cold and they heard him cough once.
But these viruses can run through rather quickly so maybe he will be fine by then. Positive thoughts to you!
Thank you Gemini. I only had the initial blood work done (ttg-iga), but discovered then that I was IgA deficient so the test was useless. My GI did the endo because I also have low ferritin and many other symptoms so he figured we'd just go in and look. I haven't had any other blood work done. I doubt they will do any now that the results are negative from the endo.
How long from this scalloping does villi damage occur? Is this a significant finding? Is it known to be a pre-cursor to celiac? Because none of the docs have said anything about it.
I am doubting if the pathologist even knew what to look for, since his report is sooooo basic and lacks any detail. I would really like a second opinion on that. I have no idea how to go about getting that done. I'm wondering if I should see a new GI and get another endo done. Although I believe that my current GI has been excellent and done everything he can. I'm doubting the pathologist's "expertise" in this diagnosis.
I know going gluten free is the answer, but I really want the official diagnosis so that I can be armed for my children. I suspect they may also have these issues.
I'm also wondering if scalloping of folds is considered "normal"? Wouldn't that necessitate an answer as to why they are scalloped? Is this considered irritation or damage? Why would this not even have been mentioned to me? I only know this stuff because I got a copy of these reports yesterday. Does IBS cause this too?
So I was finally able to obtain both my endoscopy report issued by my doctor after the procedure and the pathology report. It doesn't seem very detailed and I'm a bit surprised by what's written.
Endo report (with photos)
Findings: Normal esophagus. Normal stomach (#2). Rather clear scalloping of D1/D2 both biopsied aggressively to r/o celiac which is very possible here (#1).
Final Pathology report
1. Duodenum (endoscopic biopsy):
- small intestinal mucosa with no significant pathology
2. Stomach (endoscopic biopsy):
- gastric antral and oxyntic mucosae with no significant pathology
That's it for the pathology report. What the heck is that? My doc took 11 samples of of D1 and 5 of D2. Doesn't seem very detailed. Obviously my GI thought that Celiac was a good possibility. What does "no significant pathology" mean?
Uuughh! Does the scalloping in both areas of the duodenum (he wrote duodenal bulb & duodenum 2nd part) mean anything? Could it be caused by something else?
What do you think? Any help would be sooooo appreciated!
Thanks to everyone for your kind support. I've spent the last 2 days pretty upset about the whole thing. But I need to get on with things and take my health into my own hands, regardless. I do believe gluten is an issue, celiac or not. To be totally honest, I wanted the vindication of being able to say "see, I'm not crazy and making this up!". But that's not gonna happen at this point. I will just have to deal with the future eye rolls when I say I can't eat gluten. People will just think I'm just jumping on the "trendy" bandwagon and quite frankly that pisses me off! And what about my kids? The whole point of this was because I see many symptoms in them that fit with celiac, and I wanted them checked.
I can't expect more from my doc. I know he has done what he can and been quite thorough. He has done a colonoscopy, upper endo (with 11 samples), and ct scan. He's ruled out crohn's and colitis and obviously celiac. Says the low ferritin is probably due to heavy periods at times. He said I could be gluten intolerant, as some people are. It's pretty hard to argue for further testing. So I got sent home with "take Metamucil and we'll start from there". Uuugh!! The problem is the doctors think that what I am looking for is relief for my stomach symptoms, which is wrong. I have learned to live with and function with stomach pain. It's all the other stuff that is the problem; brain fog, memory issues, shaking, palpitations, and constant fatigue. I told him I didn't want any medications for my IBS. He was surprised by that. Said that it would improve my "quality of life". They don`t get it, because they don`t associate the other problems to the gut. Whatever. So frustrated!
And somewhere creeping at the back of my mind I wonder ''maybe I'm wrong. All my tests show I'm perfectly healthy. Why am I insisting when all tests say otherwise? Maybe I DO need to eat better and exercise. Maybe I'm exagerating and it's just normal effects of pre-menopause and aging. Stop looking for something when there's nothing. You are being a hypochondriac.'' I don't trust myself without an official diagnosis. Sad.
In the meantime I've gotten iron and b12 supplements, on my own. Wondering if 150 mg of iron is too much? Wouldn`t want to get toxicity from it.
LauraMae, I don't know if they call you more quickly for follow-up if the biopsies are positive. I have just assumed that, but have no clue if it's true. And I agree with you that the IBS diagnosis feels like a cop out. I told my GI this week ''IBS is a catch-all for I don't know what's wrong with you''.
Anyway, thanks again everyone. I feel less nutty here!
Just got back from my follow-up appointment. Seems everything is normal. GI said he took 11 samples and that everything came back as "normal". Very disappointed. Suppose I should be happy, but I can't say I am. Still no real answer as to why I feel like this. I cannot believe that it's normal to have regular stomach pain. Not discomfort, real pain that makes you double over at times. And unexplained low ferritin. And although not "officially" deficient in B12, my level is on the very low side of normal.
Anyway, so fed up. I truly believe that my GI was very thorough. I can't force this diagnosis. He did say it could be a gluten intolerance as well. But he still thinks IBS. Feels like I've wasted a year going through this long process, for nothing.
Thanks everyone for your support in my previous posts. It was very much appreciated.
I agree with kareng. Celiac can cause extensive damage and I would want to know what my insides had suffered. I assume some baseline might be useful if you want to establish how healing has progressed in the future.
I'm actually quite surprised that doctors diagnose celiac and then don't do a thorough evaluation of a person's health inside and out, given the serious ramifications of this disease.
Miss-Marie, just to add my experience. I had both a colonoscopy and endo done and oddly enough the colonoscopy didn't worry me but the endo was freaking me out. And I was just outside the room as the previous patient was doing his endo without any sedative. Believe me those choking sounds didn't help! Anyway, they gave me a bit of sedative for the colonoscopy but I was awake and watching it on the screen the whole time. Since my doc knew I was so worried for the endo, he gave me an additional amount and it put me to sleep. I woke up in recovery when it was over. No knowledge/memory of the procedure at all. And I wasn't groggy or affected at all the rest of the day. Left there with my hubby and didn't have any ill effects whatsoever. My thoat never hurt at all either. I actually wondered why they said I wouldn't be able to drive after the procedure if I had the sedative, because I felt perfectly normal when I woke up.
I honestly wouldn't be the least bit concerned to have to do it again. So ask for the sedative and tell your doctor you're very nervous. I'm sure it'll be a breeze! Good luck!
I soooo agree. I am really angry! Wait until I speak to them! Don't they realize that this is going to worry someone to no end!!?? Actually I think if they have something bad to tell you they sure as heck aren't going to do it over the phone, right? So what else can they do but call you asap and set up an appointment, without saying anything at all? It's not like the secretary is going to call and say "Hi the CT scan you had done showed cancer in your kidney and the doc wants to see you asap!" I dunno.
Ok, I'm trying to breathe...... I just googled low ferritin and kidney cancer and that REALLY didn't help. Sometimes I hate the internet (or myself for being such an info junkie) I don't know how I will make it to next Wednesday.
Why would I need to see anyone if they found kidney stones?? If that's what it is, I sure don't feel anything. Do they have to get rid of them? Is that urgent? Because the reason I'm freaking out is that they are seeing me SO QUICKLY! The health care system here doesn't move that fast for unimportant stuff. I just had the scan last Friday and already I'm being seen by the urologist. Before I've even had my follow-up with the GI. Would this be important to deal with that fast? For some reason, I doubt it.