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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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    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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