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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Here: Especially Those From Michigan, I Urge You To Read.
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DarkStar_X    0

Alright. This is my first post on here and I decided to put it here mostly because, even though I've read so many times on here that everyones responses to gluten intolerance are different, I've been through hell and a hand basket and I believe at least sharing what I've been through might help someone else. Since sometimes gluten intolerance shows up later in life I'll also say that I'm currently 23 and, at the time of the procedure that I had, my liver enzymes were extremely high with my ACL and AST being 700 and 300-500.

I started having stomach problems in 2010 with food when it came to anything that was either too greasy or too high in calories (any meal that wasnt under the 400-500 range). At first it was something I could cope with but as soon as May came around the corner I started having severe stomach pains/cramps that would lead me into the ER several times. By the end of June the visits became more often to the point where doctors and staff finally were taking my problems seriously (Although I can't prove it, I believe I was pegged as someone who was just there for the drugs as it took a long time for them to accept that I wasn't making up my pain). The doctors decided it was my gallbladder and I had to have it removed. When I did my problems and my pain stopped and I thought it was the end of my issues.

I was wrong. Two years later, this year, I once again started having stomach problems but it became unlike anything else. my diet went from normal and healthy to barely eating anything that could possibly set off my stomach but it took awhile until all I could stand to eat was soup and sandwiches. At the end of May and into the start of June my body couldn't even tolerate that and I would get these intensely painful cramps/severe vomiting to the point where moving was impossible. It took 5 trips into the ER in the span of two weeks (50 dollars each time) for the hospital to decide that it was serious and that something needed to be done.

The answer came from a GI Doctor with the surname Wiedemer who decided I needed an ERCP as, at the time, him and my family doctor thought that the cause of my stomach problems was a possible trapped stone in the liver duct that was causing high liver enzymes. June 23rd I go in for the surgery and the worst happens. Not only does my doctor botch both parts of my procedure, he tells me that he cut the duct too much and hit my pancreas at least four times which caused me to have pancreatitis and before the procedure he noticed swelling inside my stomach. Now this doctor didn't just mess up the procedure, he didn't arrange for me to have medicine afterwords assuming that I would be fine and out of his hair. I wasn't. I was in extreme pain/nausea, from the acid in my stomach, that night from midnight until 4 in the afternoon when he could be bothered to drag his ass in to see me. He also proceeded to yell at my nurse who called that night so she would be allowed to give me medicine. It is extremely painful and I don't consume food at all for two weeks straight afterword. I was lucky that I didn't get an ulcer from his lack of care and wonder if I needed the procedure at all.

Eventually I make it out of the hospital July 4th. By then the only thing I could handle were the Clear ensure drinks and I was told to drink 4/day to keep up with nutrition/calories after the hospital staff kept trying to pressure me into having a feeding tube. I was having none of it and decided it was best to let my body heal in its own time.

From July/September my eating doesn't improve very much and my family doctor becomes concerned from all the weight that I have lost during the ordeal and thinks that if I'm still unwell by the end of september I have to see a specialist. I end up having to go back into the ER a few times during the end of September and finally, finally the doctor there that had seen me go through all this finally says that just maybe my problem is celiac disease when I explained to him I had been only having bread and the chicken soup at Panera and I was still having intense pain and severe abdominal cramps.

I have been gluten free for almost 3 weeks and it's as if I had never gone through anything. I also noticed that, as my mom and I were cleaning out our cooking supplies we've used for years, that the majority of what we bought happened to be gluten free and we didn't know it. I believe I started having problems when I did because, as my family became more financially stable, we had started eating at restaurants more often and it was poisoning my body. I'm sorry that this is so long to read but I feel like everyone needs to be aware of incompetent, uncaring and simply-cannot-be-bothered people that call themselves doctors that attempt to say they're concerned with the quality of your health care. The particular doctor I had is part of an association that hires all the same people as well as trains and I strongly suggest anyone in the Lansing area that wishes to see a GI specialist make it a point to go to Ann Arbor instead for your needs as finding someone "outside the circle" that is also reputable would be very difficult.

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HavaneseMom    5

Sorry to hear you have had so many problems.

I live in West Michigan and have found a GI doctor here that I am happy with. If you are interested, his name is Dr. Steven Crane and he is at Grand River Gastoenterology in Grand Rapids. I would also recommend his Nurse Practitioner, Tamra Groothuis. She is the one I saw for my consultation and wanted to test me for Celiac after talking to me for just 15 minutes, this was after I had been searching for a diagnosis for years from my Primary Care doctor. I am grateful everyday that I walked in their door that day.

I'm glad you are feeling better now. Did you get tested for Celiac through blood test and biopsy and all related deficiencies? It is important to do so to get a proper diagnosis before removing gluten from your diet. I couldn't tell from your post if this has been done yet. Sorry if I overlooked that part.

* Edited to add- I just realized I replied to a old topic that someone else had posted a new reply to today. I would still recommend these doctors to anyone living in my area :-)

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