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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?  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
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Clash With The Doctors On My Colonoscopy Prep

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I am normally a very shy person just wanting to blend in and willingly do what I am asked. However, when doctors told me that I needed to drink high fructose corn syrup, corn in my medications, and plastic (Mira lax) they had overstepped their power and I felt threatened. I swell up if I smell corn, so I knew I couldn't eat it. They dismissed my concern about this saying, "You can do it for the test." I set out to figure out a safe alternative for me to prep for my colonoscopy. This process took me over a month of most of my daily thoughts to figure out. I felt in above my head. I asked pharmacists that worked with my doctor for alternative products. They referred me back to the doctor. I told them that the doctor would not provide me with an alternative product. They said well the doctor must not be concerned about your allergy problems. I asked the pharmacist at the local drugstore who also referred me back to the doctor. Baffled I finally asked a friend that was a pharmacist who I should ask that could help me. She said that she could help. She also said that she would not have believed my allergy problem, but she had a relative having the same sorts of issues.

Finally, I felt ready and the day for prep arrived. I woke up that morning and for the second day in a row had diarrhea. I mean BEFORE my prep even began! As the day went on I scolded myself about not just being able to do what the doctor said it do. Still, the product should work, all I have to do is be absolutely sure I get enough fluids. I also had made broth with meat and veggies and had this strained for meals. I remembered the product mostly would not be absorbed by my body, so even know I took a large quantity, it would pass through. I trusted my friend the pharmacist and she had used this very substance for her colonoscopy a few years back. Besides the doctor had prescribed this substance to use in prep, just not the brand and form which I had. Finally, I convinced myself and poured the capsules into a cup. I added water and stirred. I drank it down. IN the bottom of my cup was soggy powder, so I chewed and swallowed. My pharmacist friend had told me that when the treatment was finished with the job, the stool would come out yellow and clear. Mind did by the end of the first dose. That meant that I could stop, but I did the second dose anyway, because I knew I had to be sure. The doctor's prep had also a morning prep before the test, but for me that would have meant being up at 3 am. I hadn't known this when I signed up for their first appointment of the day. I did both parts the day before so that I didn't have to get up during the night or worry about driving to the office with diarrhea.

I first talked with a nurse that asked which prep I did. I told her I prepped with magnesium citrate. She asked if it were the one prescribed and I said I ordered one I could tolerate without corn. Are you]allergic to corn, she asked? I can't eat corn I replied. What are your symptoms? My body swells up. "You could have done it for the test." Anyway, I felt angry with her. She left me to dress. Another nurse came in and started going over more info that my prep wasn't good enough.

The doctor came in and announced that she heard I was rude to the nurse. Then she went into a lecture about how my prep wasn't good enough. Her nurse told her that I did my own prep and this was foolish behavior! I began to yell about them dismissing a person when they say they can't have corn and ordering only giving meds with corn. The doctor claimed she wished she would have known I couldn't have corn... I had told her I couldn't, but they kept saying, but you can have it. Only bloating. Ahhhhhhhhh, I thought! . The doctor said that it was dangerous of me to take the same dose of magnesium citrate which she called for in a part of her plan. It can tend to give kidney problems. I didn't take the same formula, because it had lemon juice which I cannot have either. Also, she mentioned my kidney had showed somewhat dehydrated a couple of days before. Everything had looked within normal limits to me. And she affirmed that it was just a little borderline.

They reminded me the Miralax doesn't have corn, but I said it is plastic which isn't to eat! ) I asked them with my hands on the oxygen tube in my nose if they wanted me to leave?! Finally I said, 'You know I think we both have the same goal-to keep me safe. I know that I can't eat corn. Finally everyone seemed a bit disarmed. The doctor decided to start in without sedatives to see if the "prep" worked." I alerted them that I read up on the sedatives and thought we needed to keep the dosage low. . I enjoyed watching the bright red shiny pictures as the scope traveled through a twisting tunnel. Everything looked clean except for a tiny wisp of mucous. The doctor looked rather excited (in a good way) over what she saw as if she were marveling also. Suddenly she hit a twist and began to turn. I felt extreme pain as if someone took a credit card and scraped it against the side of an open sore. This brought a muffled cry as I never recall making except perhaps in childbirth. It sounds a little like a chicken cackling after laying an egg. " I am sorry I said, I can't." I couldn't lie still as it hurt too much. Then she said that the prep looked good enough, so I got the sedatives,.

When I woke up, I was in a bed facing a huge window with the light cheerily coming in. The doctor was standing nearby looking concerned. She said that she knew that I wanted less dose of sedative, but they ended up giving more than usual. The kinks they found were so sensitive. Then she said that we could do the same prep again if we ever needed to. She mentioned fodmaps diet for me. I looked into it and it is similar in many respects to what I am doing. Fruit variety is limited, but my recent favorites strawberries and bananas are allowed. Many of the ones I can't eat are on the bad list that seemed interesting. It is also gluten free. The doc also said that the endoscopy looked great. Everything looked healed up.

I apologized to the nurse and the doctor, for indeed I had been rude to them. I know a person who, "though He was reviled, He reviled not again" and would like to do likewise regardless of circumstances.

I felt somewhat dizzy from the sedative. We walked to the lab to get my blood work. We got in the car. I gulped down two thermoses of home tap well water as I felt so thirsty. We drove for a while and then I started searching for a plastic bag if you get my drift. There were holes in the bag I found. oops, I had planned to put a bucket or something in. Anyway, I felt better when the water was gone and decided to wait til I got home to drink more and have some food.

I came home and put on my robe and collapsed on the couch with my pillow. The children were duly impressed when they came home later. Actually they were a little worried. I had heard of the robe tactic when you need to rest and it truly worked. I really didn't feel too bad, but was told to lay low.

I looked up kinks in the intestine. It can be cancer. my dad said that no one in the family has had cancer. He has a nice point. BUT "nobody" has had celiac either and that didn't stop me from getting it and or the genes Okay, but the doctor said that they found one polyp that looked benign She brought up cancer for that. She mentioned the kinks, but didn't mention cancer as an option. She took biopsy's, though, so we're bound to find out. Kinks can also be linked to celiac or chrohns, or pelvic inflammatory disease. I took from the Fodmap diet option that she is thinking food problems and that stands good for my side. My side of defending my right to not eat corn. Since, the doctor offered me a fruit intolerance test. But she mentioned you just drink some stuff and blow into something. I probably will stall out, because what do you think that the stuff will be? It is probably high fructose corn syrup.

The results of my tests showed no cancer or significant ungoing damage to my digestive track. Thanks to my friend the pharmacist I knew to have the doctor check for electrolyte balance after that test. This test came out well. My prep didn't damage as was feared. Also the doctor said that if we needed to ever, we could use that same prep again, except perhaps would need to do the last coarse the morning of the exam. Personally, I hope there never is a reason, but am glad that if there is ever was I know where to go for help!
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Follow up.  I asked the GI doctor to look at some nutrient tests that I had done and tell me if it looked like celiac could have caused the Mal-absorption and later increase in absorption and nutrient levels.  However, she doesn't do nutrient tests, so could not.


She believe my best proof of having celiac disease stemmed out of my totally positive genetic results, symptoms, and response to the gluten free diet.  I will never be able to do any gluten challenge at all, so I thought I would just ask while I was there for a colonoscopy.  I am happy to say that I had no visible damage in my small intestine after 2 years gluten free.  Just to qualify I had no baseline exam to compare-no need to point that out.  I was 3 weeks gluten free when I heard about testing.  I still probably could have done endoscopy, but my learning process is slow and my will power to not eat gluten is HIGH.


The GI doctor and I decided  that there was no need for us to work together.  My care is being covered by my functional medicine nurse trained in nutrition and her lab work.  The GI doctor had previously mentioned that she appreciated the labs that I had done.  Having orchestrated them by myself with much help here, elsewhere online, and with my nurse I felt fine about that.  :)

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