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      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Endoscopy This Morning
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14 posts in this topic

I had my Endoscopy this morning and it went well. I came home had some gluten-free soup and later took a nap. The doctor gave me summary of his conclusions and I wanted to see if any of this sounded familiar to any of you:

"paucity of circular folds in the 2nd and 3rd part of the duodenum, biopsies taken for Celiac Disease"

I told this doctor I have celiac disease and he wanted to check the villi to make sure I was not accidently getting gluten from somewhere. I am sure I am 100% gluten-free and have only had a few accidents since starting the diet a year ago.

My concern is, I had an Endoscopy over a year ago and the biopsy only showed "patchy inflammation" not enough to make a dx, a few months later I was diagnosed through Enterolab and began my gluten-free in Sept 03. I would think I would not have developed damage since being on the gluten-free diet and that maybe this indicates something else is wrong, what do you guys think?

Thank you in advance for your opinions :D

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I also had the folds when I had my endoscopy, and hematomas, and my villi were completly flattened and there was alot of inflamation. That was my first endoscopy when I was biopsied for celiac, which came back positive. After I was on the diet for qite a few months he done another one to see if it looked better, and he said it was like night and day, it looked like it was in much better condition. I don't need another one until Jan.05 Well unless something happens where he thinks I need one sooner. Good luck with everything. :)

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Hi Faith, thank you for your response.

What you said makes perfect sense to me BUT in my case I have been gluten-free for over a year now. Why would there be no damage a year ago and now all the sudden there is? I just don't understand. I guess I will know more in 2 weeks when I get my biopsy results..... till then....... I just sit and wait ;)

Thank you again

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I'm glad the test is over for you, and I can understand your worry about those findings. I'm not up to speed on biopsy and endoscopy results, so I can't offer advice, just my support. (I do know that some people don't heal very fast... I still wouldn't think that would be _more_ damage, but at least could explain a lack of increased damage for those cases.)

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Wow! two weeks is a long time to wait for your results! Mine took about two days and it seemed like eternity!

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Well I got my results back today from the nurse, the biopsy came back clear as far as she could see but I have an appt with the doc on Tuesday. At first he wanted to follow up in 10 days but has now decided to move it up to 5 days. I guess we will try to figure out what my problem "could" be.

Thank you all for your thoughts, support, prayers and opinions. :)

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I had to wait over a month for my biopsy results, only because the doctor wouldn't see me sooner and they refused to give me my results over the phone or through the mail until I had seen the doctor!

Stacie, I am glad they moved your appointment up. I hope the doctor can help you figure out what needs to be done to get you feeling better.

I looked up the word paucity(out of curiosity) and it means "small in number" or "small in quantity". So I guess that means you don't have very many circular folds in the 2nd and 3rd parts of the duodenum. I don't know what that would indicate, but as long as the villi are not damaged, then I guess that part of the report is good news.

Keep us posted. You are in our prayers.

God bless,

Mariann

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Not having folds is bad. I was told when I had my first biopsy about 2 months ago that I had no folds and my villi were severely flattened. I'd say to look for hidden glutens. I almost ordered something in my favourite Chinese restaurant that had been marinated in kikomen sauce even though I brought my soya sauce to the restaurant. However, when they all understood my problem they were able to make me something with rice noodles,scallops and vegies and my favourite soup with no soya. Also, from reading this forum I never even thought about my shampoo and I am going to check my lipstick asap. I hope you have a seperate toaster. Good luck@

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I was just wondering if there are fold through out the entire duodenum? I ask this because in my first endoscopy (when the doctor did not see any reason to take even one tissue sample even though I told him I wanted him to test for Celiac) I received a copy of the pictures. There were NO folds anywhere and when I went back for the results the phys. assistant that saw me she asked me if I routinely took laxatives because my intestines were very slick and shiny. What a stupid thing to ask a person who was in there getting tested for chronic diarrhea! Anyhow, those pictures are still in my medical record, but I put my copies in a safe place and promptly forgot where they are. I have since looked at what a normal small intestine looks like and mine looked nothing like that, yet I was told everything was "normal". I don't trust either of the doctors I have seen over the last three years, and I won't even mention what I think of the PA I saw (who actually thought you can only test for Celiac with a colonoscopy! I think she was mixing it up with Chrohns). Just curious what you guys think.

Stacie, let us know how your appointment goes tomorrow. I am wating to hear what they have to say.

God bless,

Mariann

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Well guys I went to the doctor and I am sorry if it sounds like I am ranting but here it goes........ I am FIRING my doctor and this is why.

First of all on my first appt with him I told him up front of my celiac disease diagnosis and that I strictly adhere to a gluten-free diet. Well he wanted to order an Endoscopy just to make sure I was not getting gluten from a hidden source (which I knew I wasn't because I have reactions within 30 minutes) and would not focus on any of my other problems. He was like a horse with blinders on :angry:

Today's appt went something like this, he told me my gall bladder scan was clear and that my villi were normal, so it didn't look like I had Celiac's. I said well considering I have been gluten-free for a year they should be normal and then he said he told me to eat a normal diet 3 days before the test, which he DID NOT and I told him even if he would have instructed me to do that I wouldn't have, because it makes me violently sick :angry: .

I then told him I was not there for a Celiac dx that I had other problems that I needed addressed! He examined my abdomen and thinks I have "inflammation of the intestinal wall" which could be related to my possible Lupus dx (I will know more about that on Oct 7th).

He then told me he wanted me to have another Colonoscopy and small bowel follow through, I point blank told the nurse I was NOT going through those tests again (just had them done last year and they made me so sick). I got so upset I totally forgot to tell him about my nausea (after I eat) and asked the nurse to ask him about it, well at first he said he would give me something after I had the procedures done and then I talked to another nurse, she went to talk to him and he gave me a script for Phenergen.

So I still do not know anything, I guess I will continue coping the best way I can and attempt to look for a new GI doctor that will LISTEN to me. :blink:

Thanks to everyone for you thoughts and prayers.

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Hi, Stacie, It looks like it is my time to talk about gall bladders! Mine was finally removed about 12 hours ago, after 6 months of misery and tests. What gall bladder scan did you have? Was it a biliary scan, where a dye was injected into your bloodstream, then picked up by the liver, which sent it to the gall bladder, which released into the small intestine? If that is the test you had, was CCK administered to make the gall bladder empty into the intestine? If it was, did you get very ill and hurt like bloody h___ on your right side under the ribs? If you did, then you had an abnormal reaction, and your gall bladder needs to come out. Even if it is functioning "stone cold normal," getting sick when it works means it is a bad organ. If you only had xrays, ultrasounds, and ct scans, they very often come back negative, even when the gall bladder is very diseased. They are not definitive enough for a firm diagnosis of anything but gall stones, and even those get missed. By all means, if you do not think your doctor is listening to you, fire him! I am firing my family practioner for the same reason!

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Stacie, I'm so sorry for you to have had to go through all that. I would fire the doctor as well! I agree with Dessa. My main gallbladder disease symptom was nausea, every day, no matter what I ate. And then occasionally I would have horrible pain. I had my gallbladder out 5 years ago, and I was happy with the results. I don't know if getting diagnosed with Celiac earlier would have changed the outcome, but I know I felt better with my GB out. With your next doctor please have them thouroughly check your gallbladder.

God bless,

Mariann

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jhmom: sorry about your negative experience.There are some terrible doctors out there. Do you feel like your celiac disease is better and you are looking for something else that is causing you pain?

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Dessa & Mariann, the only gallbladder study they did (so far) was an ultrasound of my entire abdomen. If my problems continue I will push for the other testing. Thanks for all the info.

Coolcat, Yes I think my celiac disease is better and under control and that something else is causing my GI problems. I may know more after my next doctor's appt with my Rhuemy.

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