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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Got My Biopsy Results What Should I Do?
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5 posts in this topic

I got a letter in the mail today indicating, my colonscopy was normal and my endoscopy indicated: normal duodenum, inflamed esophagus.

That is it! I haven't a clue what to do. Does, that mean they checked for celiac? anything? When they send the biopsies to the lab, do they check for everything/anything. I feel very confused and very frustrated that after going through such a procedure they would send a letter. I feel at a loss and wonder what I should be doing next. Anyone have this experience. Should I continue eating Gluten and then get a blood test? Who do I go to?? I feel terrified to eat Gluten after almost 1 week Gluten free.

If anyone has a suggestion, please let me know. :(

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I got a letter in the mail today indicating, my colonscopy was normal and my endoscopy indicated: normal duodenum, inflamed esophagus.

That is it! I haven't a clue what to do. Does, that mean they checked for celiac? anything? When they send the biopsies to the lab, do they check for everything/anything. I feel very confused and very frustrated that after going through such a procedure they would send a letter. I feel at a loss and wonder what I should be doing next. Anyone have this experience. Should I continue eating Gluten and then get a blood test? Who do I go to?? I feel terrified to eat Gluten after almost 1 week Gluten free.

If anyone has a suggestion, please let me know. :(

I would call your doctor immediately and ask him/her to explain it to you.

And if you don't mind me asking, have you noticed a difference being gluten-free for the week? Has it help with what ever symptoms you were experiencing?

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Yes, I feel 90% better than I did wednesday night a week ago. I am so fearful of a flare up to totally discount the gluten free factor.

My thought is, perhaps I should just remain on this type of diet, and check and see. My fear is that I feel like a poser. Like I am not really a celiac, therefore, I shouldn't be following this, since I have not been diagnosed.

I will call the doctor tomorrow, I just wonder if there are specific questions I should ask? Like did you check for celiac? what does the inflammation mean? How should I handle this?

I would call your doctor immediately and ask him/her to explain it to you.

And if you don't mind me asking, have you noticed a difference being gluten-free for the week? Has it help with what ever symptoms you were experiencing?

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I got a letter in the mail today indicating, my colonscopy was normal and my endoscopy indicated: normal duodenum, inflamed esophagus.

That is it! I haven't a clue what to do. Does, that mean they checked for celiac? anything? When they send the biopsies to the lab, do they check for everything/anything. I feel very confused and very frustrated that after going through such a procedure they would send a letter. I feel at a loss and wonder what I should be doing next. Anyone have this experience. Should I continue eating Gluten and then get a blood test? Who do I go to?? I feel terrified to eat Gluten after almost 1 week Gluten free.

If anyone has a suggestion, please let me know. :(

Definitely call your doctor and ask for additional information. An inflamed esophagus could be many things, two of which are acid reflux and Eosinophilic Esophagitis (EE), both of which can cause inflammation (my daughter has both). Ask him specifically if they did a biopsy of the esophagus and if they tested for the # of eosinophils (anything higher than I think 10 is indicative of acid reflux and/or EE).

Your doctor's office should have called you (either way). If you're not happy with what he/she tells you, get a second opinion.

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I got a letter in the mail today indicating, my colonscopy was normal and my endoscopy indicated: normal duodenum, inflamed esophagus.

That is it! I haven't a clue what to do. Does, that mean they checked for celiac? anything? When they send the biopsies to the lab, do they check for everything/anything. I feel very confused and very frustrated that after going through such a procedure they would send a letter. I feel at a loss and wonder what I should be doing next. Anyone have this experience. Should I continue eating Gluten and then get a blood test? Who do I go to?? I feel terrified to eat Gluten after almost 1 week Gluten free.

If anyone has a suggestion, please let me know. :(

Hi,

I too had a clonoscopy years ago and was told I had mild case of bowel dissorder and they basically did nothing or gave me any advice about what to do about it.

here is my story- I am 45 no but at 21 years of age I had problems with my bowels- I had an operation and was told I'll be fine. I went on my way to find that as I aged I seemed to get really bad symptoms- I went to the allergist and was tested- again nothing. I went to my doctor and was told I was fine. Very frustrating becasue I knew there was something wrong- but I couldn't figure it out.

During a very stressful divorce- my symptoms got really bad and I blew up like a blow fish- had (too many symptoms to list here-hah) very bad cramps, and was not able to get a hold of the problems- the sysmptoms I felt just got worse. I went to a naturopath and i took a voodoo type of test- but I went with the results and followed the prescription that I was given. Wow within a month I was feeling 100% better and had energy and felt good about myself. My body went back to normal and I was in good shape and feeling really good.

The problem I faced after- was it possible to maintain the lifestyle my naturopath told me to follow- NO WAY. I was eating nothing but basic basic foods and very difficult to do when you are on the road 5 days a week. So over the years I introduced new foods one at a time and thought it was at least livable.

Time moves forward and another stressfull time happened and boom- I am full blown out symptoms and no where to get advice- Now I got to my doctor and explained every sysmptom I had and my doctors said I should take a Celiac blood test.

I too am waiting to get the results- I know I have food allergies- I am not sure if it is gluten- my bet is YES! either intolerance or Celiac- either way I know how my body reacts.

Follow your instincts- you may want to try fasting on strictly soy beverages and brown rice for a few days or a week- then try eating a few peanuts- see how your body reacts. Wait a few more days and try some corn and them other foods. If it isn't Celiac- it could very well be other foods or chemicals.

I wish you the best.

Shawn

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side - so it is worth getting your levels monitored if you wish to supplement as one can have too much of a good thing - to much iron is dangerous. I hope you continue to feel well.      
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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