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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 Celiac.com's FREE weekly eNewsletter   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

Endoscope Done Today
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My husband had an scope done today (blood last week, but don't have results yet-urgh) and I'm wondering if the doc would/should have seen eroded villi during the exam today or is the only way to detect damage after biopsy sample(s) are completed? Just feeling kind of anxious to know more either way. I'm somehow thinking Doc should have visually noticed changes and feeling kind of discouraged he did not, but I have no clue.

I guess all the anticipation is killing me -I've been researching and learning for several months, come to grips with having to change over my kitchen and ways of eating for the whole family (both kids and myself are at minimum wheat sensitive/intolerant) and I think just looking for the green light to tell me "GO NOW".

Any thoughts? Thanks in advance...

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Sometimes, if its really bad, they will see something. The problem is the villi that is damaged is very tiny so looking at little bits under a microscope is the best way to tell. Who would think the lack of something so teeny weeny hair-like could make us feel so bad!

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My husband had an scope done today (blood last week, but don't have results yet-urgh) and I'm wondering if the doc would/should have seen eroded villi during the exam today or is the only way to detect damage after biopsy sample(s) are completed? Just feeling kind of anxious to know more either way. I'm somehow thinking Doc should have visually noticed changes and feeling kind of discouraged he did not, but I have no clue.

I guess all the anticipation is killing me -I've been researching and learning for several months, come to grips with having to change over my kitchen and ways of eating for the whole family (both kids and myself are at minimum wheat sensitive/intolerant) and I think just looking for the green light to tell me "GO NOW".

Any thoughts? Thanks in advance...

I had a TTG of > 100 on a scale of 10 positive. After the Endoscopy Dr told my wife that he did not believe I had Celiac cause he did not see damage indicating Celiac. He only took 3 biopsys and all showed moderate villous blunting confirming Celiac disease. Dr did not see the damage in my case so I would not get discouraged.

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I think it depends on the extent of the damage.

My intestines were so damaged that the doctor was exclaiming during the endoscopy "classic coeliac duodenum" and afterwards he showed me a picture of my completely eroded intestines. They were so wrecked that there were no villi at all to be seen. Straight after the endoscopy he told me I definitely had coeliac disease and that I should go gluten-free immediately. The biopsy results later confirmed the extreme extent of the destruction. I was so shocked by how severe the damage was!

But I think for a lot of people the damage isn't as obvious or is more patchy so they have to wait for a biopsy before any diagnosis can be made.

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Thank you everyone, you have given me hope, I was fearful that nothing visual would just say "negative"....though I'm finding it hard to be patient. Was at the Doc with my son today and asking for a copy of hubby blood labs, but alas, doc said he would have to talk to my hubby first...then would mail. ACK!!!!!! My fingers are crossed we get a confirming diagnosis and don't have to struggle for years without knowing.

Coincidentally, my toaster zapped out this morning, so I'm hoping this is a sign I can make drastic changes. Don't think hubby/kids will go along with the necessary changes unless the doc says it's necessary. I'm convinced, but it's not enough for them...even when I point out how badly "the guys" feel after a sandwich vs chicken breast and vegtables.

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To echo others here, my doc told me it all looked normal as I came to afterwards, and told me to continue to eat a normal diet. Two weeks later, a nurse called and told me that I have Celiac disease and sent a poor-quality photocopy of a short pamphlet about how to eat gluten-free. When I asked if I should schedule a follow-up exam, I was told that the doctor was off - for the entire summer - and that they'd call me when she returned.

All of which is to say, the time between now and when you get results may seem slow, but if you suspect Celiac there's no reason not to start the "diet" now, since all tests are done. Worst case they'll come back negative and he'll be a few days or a week or so into the diet change and will know if he feels better, indicating possible sensitivity.

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    • Hello everyone Thank you so much for all your contributions and tips, I'm sorry for my absence but I've had a big project deadline to complete. Over all, I think things are on the mend for me too.  I was quite cynical at the doctors' approach at first. I'd have much rather had a scope to find out what was happening, instead of being prescribed three months of omemprazole or zantac to see if it helped.  Unfortunately the gen on the zantac contraindictaions list stipulated that zantac should only be prescribed if your doctor is sure what is wrong with you, as it might otherwise be covering up cancer!  Those aren't the things a hypochondriac wants to read!  Anyway,  during this that time I've taken one months of omeprazole (20mg) and as that gave me D I changed to two months of zantac (most days only 75mg a day, but doubling the dose on odd occasions when the burn seemed to come back).  During much of this period I've tried to keep my diet low in fat, spicy food, drinking very little caffeine, drinking strong camomile and slipper elm, and I think a key help has not eating for a 12 hour stretch overnight because I think that really helps the stomach heal.  I hope my system is finally recovering and hope to come off the zantac towards the end of this month.  It is hard to phase these things out slowly when you are already on the minimum dose, but all the tips about marshmallow, licorice and slippery elm etc will no doubt come very helpful then!   I have come to the conclusion that this is a new weakness in my system and I'll have to be very careful to avoid gastritis in the future, by no longer taking asprin (unless the doctor ever tells me I have to), not over doing fat, greasy food, etc.  The last time I drank some sparkling wine or fizzy drinks was awful, so I shall avoid them too. Throughout this time probiotics have helped me with the C, upper left quadrant pain  and wind that the zantac seems to have produced! And of course all the help from you guys. Will keep you posted Whitepaw on life post-zantac!
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    • i ended up with dairy intolerance over 10 years ago, and celiac over 4 years ago, then this year got ulcerative colitis diagnosis.

      Dairy issues are caused by the fact the enzymes to digest it are produced by the tips of your villi, these are damaged first and most by the disease and you end up with dairy intolerance. Some people can add it back after a few years of healing. Other allergies and intolerance issues will also develop the longer your on gluten.....it will really just shorten the list more, as damage ramps up, digestive issues arise, and your body starts confusing other foods as a culprit and developing allergies.

      Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups. UC common triggers are gluten, soy, dairy, and in some cases like mine it is triggered by carbs and sugars like glucose and fructose.....yeah I had to go grain free and change to a nut, seed, leafy low carb veggies and egg white diet.
      Since you can not have nuts but do not mention meats I can say your lucky. I developed a issue where I can not digest meats due to my damage. I might suggest you look into a keto/paleo diet. Where you eat meats, eggs, leafy greens. a higher fat/protein diet.

      Now after 8 months on this diet I am seeing even more improvement and had have several issues resolve and am putting on weight.
    • You say your on a gluten free diet, just a check. Did you get new cookware, check every ingredient, throw out old contaminated cutting boards, jars of condiments, etc. Clean out everything? You first have to decon your house in a way and make sure it is not in anything, including cosmetics and soaps, as these get on your hands and evenutally into your food. Gluten is a protein smaller then a germ, it only takes a tiny bit to start to raise your antibodies, and bleach does not kill it.  Please check hte Newbie 101 form.

      Now to address your questions, a whole foods only diet, nothing processes will speed up your healing, changing to making your own foods with simple ingredients (keeping it under say 5-7 things) and nothing processes or not labels gluten free (with certification, none of that made in the same facility) is the best way to heal faster.

      Keep a food diary to keep track of what you eat and any other problems, many of us have other food intolerance and allergies crop up. Also make sure your getting a little bit of everything nutrient wise.

      Iron and supplements, iron works with vitamin c and b vitamins and some  others. You have to be taking vitamin C with your iron to get your ferratain up. I personally have this issue also. I can give you some suggest some other stuff to help clear up the fog, even if your levels are alright they still help on a gluten free diet. Liquid Health Stress & Energy and Liquid Health Neurological Support 1tbsp each twice a day. I recently changed over to a sublingual iron from trace minerals....takes some getting used to be is supposed to be easier to absorb.  Magnesium, Look into either Natural Vitality calm or Doctors Best in the powder, both these mix in a drink. With calm you have to start off at 1/4tsp and slowly up to the full dose over a week....it can be a bit harsh on the gut if you find this to be then use doctors best. I rotate vitamin C between a pill, and sublingual depending on price myself. I find pricing on the above goes to either LuckyVitamin.com or Amazon as they fluctuate.

      https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/  
    • A dairy issue would not cause positives on the celiac panel.  You may even get dairy back after some time on a strict gluten free diet.  I am sorry you are having to deal with these issues but strictly following the diet may help not only the dairy issue but also may ease the UC. Ask any questions you need as we are here to help in any way we can. Do be sure to check the Newbie thread at the top of the Coping section for some valuable info on all you have to do to stay safe.
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