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Need A Little Advice
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About a month ago I went in for an endoscopy. My throat was all swollen and red and my doctor told me my duodenum looks exactly like someone's with celiac. They did multiple biopsies of my throat and duodenum. Went in for the results and the doctor told me I'm allergic to some kind of food and to take prilosec twice a day and come back in June for another endoscopy. I've had symptoms for 6 years and I was told I had IBS. So I made an appointment to see an allgerisit in May even though the doctor told me to wait until the second endoscopy. I had a bad reaction to some food on Monday and I decided to go gluten free. Is this going to mess up my second endoscopy? Should I stay on a normal diet and wait or stick with the gluten free? Any suggestions would be helpful.

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Did the doctor actually diagnose you with celiac? Was his opinion about your intestine based on the biopsy results or just what he could see during the procedure? I'm mostly confused. Why would he prescribe prilosec for an allergy when he doesn't even know what that allergy is? To answer one question, yes, going gluten free before a biopsy will skew the results and could lead to a false negative. I'm in no position to give advice on what you should do, but if possible can you get in to see the doctor again sooner to talk things over? I also don't understand why he would want to prevent you from seeing an allergist. What difference does it make to him whether or not you determine what is causing this allergic reaction? If your throat was red and swollen that sort of sounds like it's approaching dangerous and waiting another month and a half just sounds hair-brained to me. I would certainly recommend keeping a journal listing what you eat and what symptoms you suffer from. You may be able to use that to pinpoint what is causing your problems. Other than that you may be recommended an elimination diet. Anyway, not really any advice I can offer on what to do, but hopefully you'll get some answers and start feeling better soon.

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Get the lab report and see ifctgey biopsied you or just looked.

Did they run a Celiac blood panel?

If you go gluten-free now you can't undergo Celisc testing. Let's figure out if the testing has been done yet (if you can stand staying on gluten).

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Thanks for the advice. The doctor went off what it looked liked. They did biopsy it but I don't know if they ran a celiac test or not. He didn't say anything about it in the visit to go over what they found in the biopsy. Just that what I have is an allergic reaction to something I'm eating. No blood work was done. The endoscopy was ordered for my gallbladder problems. I'm starting to think the two are connected. The food journal sounds like a great idea, I'll do that and get a Celiac blood panel done. Thanks again so much for your help and advice.

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Keep eating gluten for your Celiac panel!!! And make sure they give you all the tests - page 1 and 2. Insist on it. http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf

And I'd still get the lab report.

Yes, there's a connection between gallbladder disease and Celiac.

Your doctor is an idiot, btw.

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    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
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    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
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