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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About missladyj

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    1. missladyj added a post in a topic Waiting   

      no I'm stubborn and wanted that positive diagnosis. I am nearly ready to say screw a diagnosis and just do it.
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    2. missladyj added a post in a topic Waiting   

      So where we last left our hero she had a lot of blood work done, which showed nothing significant. Fecal fat test (gross) which showed more fat than it was supposed to so the doc said you have a malabsorption disorder. Okay great now what. So then we did a colonoscopy which turned up nothing. An endoscopy which turned up nothing. Then we did the pill cam endoscopy which showed that I have "nonspecific ulcers" in my small bowel. Okay great now what. So then we did a blood test for Kron's disesase as well as Ulcerative Colitis. Negative on that. Official diagnosis: malabsorptive disorder, nonspecific ulcers, and chronic hemmoroids. I was given no course of treatment, just told not to use ib profen because that would aggravate the ulcers and told to come back if I had any other problems.

      Considering the doctor had no bedside manner, offered no real reasons or treatment...I haven't been back. I still have some stomach issues some weeks are better than others. Some days I go to the bathroom frequently other days I'm constipated. Every few weeks or so I have what I believe to be a hemmoroid attack. Painful bowel movement, blood on tissue, and the like. Well today. I was brought to tears by the painful bowel movement. It's only getting worse each time I have an attack. I haven't had much luck with topical creams and decided to talk to the pharmacist. Who politely as she could suggested I should see a doctor. The logical side of me knows she's right but the doctor I went to was such an asshole that I don't have a fondness for visiting any doctors. She also suggested that I might have an intolerance to something and that I should look into it...well lady I said my doctor says I don't and that it's impossible to have a false negative. She gave me a look.

      I know I need to put my big girl panties on and go. It's not getting better. It's painful. It makes me cry. And dammit it's not normal and topical freaking creams aren't working. I'm going to call my gyno in the morning to see if she has someone she can recommend because I am not going back to the asshole to talk about my painful asshole.

      I have no idea if this is celiac but I figured if anyone would understand the frustration of knowing somethings wrong and not being able to figure it out...y'all would.
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    3. missladyj added a post in a topic Waiting   

      a little update.
      still taking the stupid flagyl...last day is monday yay!!

      noticed an increase in stool frequency...about 8x a day. as of Monday evening, no gluten and very little lactose (just in my yogurt drink so I have some good bacteria). still going multiple times a day but I figure my system might a) need time to adjust and flush the gluten out if that is in fact the problem I'm getting assaulted with 1500mg of flagyl a day and my body doesn't like it. I am seeing increasing amounts of food particles. I have been able to identify cranberries, strawberries, corn (nature's tracer), noodles, and bizarrely enough quinoa. And yes I am chewing my food. My mom was a bit concerned about it and told me to call the doctor...and let him think about it...he moved my follow up appt to Monday so I thought I would wait til then. But then maybe if I give him more info in advance he'll be able to ponder the situation longer.

      Nurse just called back. She said to keep an eye on things through the weekend and they will see me Monday. The doctor wants to put me on pancreatic supplements. I asked her what they were and why? She said the doctor would tell me Monday. Weeee everyone likes secrets and surprises...but not me. Gr.

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    4. missladyj added a post in a topic Top Five Reasons To Get A New Doctor   

      when they throw medication at a problem that you have tested negative for

      and my mom's story (although she doesn't have celiac, she has another autoimmune disease)
      her doctor told her she was mom kindly told him "you try being on high doses of prednisone for 6 months and see if you lose weight" the nurses got a chuckle out of it and said that they had gained weight after only being on predisone for a couple of days. jerk.
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    5. missladyj added a post in a topic Waiting For Blood Test Results   

      yay another Colorado person!!

      feel better!
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    6. missladyj added a post in a topic A Question From A Rookie   

      Thank you. This is just what I needed to read.
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    7. missladyj added a post in a topic Don't Take No For An Answer!   

      good call. I am strongly considering getting a second opinion
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    8. missladyj added a post in a topic Negative Blood Test   

      7 out of 10?!?

      do you have a link or anything??
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    9. missladyj added a post in a topic Waiting   

      I called my mom and told her what you said...and she said TRY THE DAMN's not going to hurt you...if it barks like a dog, sounds like a's a dog

      I gave her many rebuttals about how I wanted an absolute postive which she quickly shut down by saying I've never tested positive for Wegener's (autoimmune disease) in 15 years but all my symptoms match up and I respond to treatment.

      I'm shaking and getting teary right now. I just wanted to say thank you for taking the time to look at my results and for continuing to urge me to try the diet. You have no idea how much it's appreciated.
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    10. missladyj added a post in a topic Waiting   

      when I googled them that's exactly what I thought and found but I wasn't sure because how could the doctor have missed that?

      I mean it plainly says in 3 locations blood, stool, and biopsy that I am negative for parasites but he still wants me to take flagyl?!

      If I try the diet for a period of time and the results improve...would it be worth it to later get retested?
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    11. missladyj added a post in a topic Waiting   

      unfortunately I don't have a scanner and I left my camera at home. boo. it appears as though the doc is right I am completely negative for celiac. hrm.

      These are my blood tests:
      e. histolytic ab transferrin (amoebas) Result Negative 254 Reference Negative 192-382 mg/dl

      celiac ab panel t. transgl IGA Result 3
      interpretive criteria <20 units antibody not detected, > or =20 units antibody detected

      gliadin IGG Result 3
      gliadin AB IGA Result 3
      interpretive criteria <20 units antibody not detected, > or =20 units antibody detected

      reticulin IGA NEGATIVE
      reticulin IGG NEGATIVE
      IMMUNOGLOB A 149.0 range 60-400mg/dl
      reference range : <1:5
      interpretive criteria: <1:5 antibody not detected, > or =1:5 antibody detected

      vitamin d total result 46.7 reference 25-80ng/mL
      optimal level 25-80 ng/mL

      as for the metabolic cmp, tsh, iron and tbic, vitamin b12, folate serum, c- reactive these were the only ones that were flagged the others are well with in range

      CO2 result 20 LOW reference 22-31mEq/l
      Calcium result 8.4 LOW reference 8.5-10.4mg/dL
      Total protein result 6.3 LOW reference 6.5-8.3 mg/dL
      Albumin result 3.4 LOW reference 3.5-5.0g/dL
      C-reactive protein result 11.1 HIGH reference <10.0mg/L
      HCT result 48.4 HIGH reference 38.4-47.7%
      MPV result 10.0 HIGH reference 6.3-9.9 um3
      %reticulocyte result 0.76 LOW reference 0.98-2.67%
      absolute retic 39 LOW reference 44-118 K/mm3

      HIV type 1&2 Negative

      Stool tests ordered and results:
      fat stain, obfe automatad, o and p, stool, cdiff, toxin a/b
      feces wbc result none seen
      feces rbc result none seen
      o&p direct result none seen
      o&p conc result none seen
      o&p trichrome result none seen
      cdiff toxin a/b negative

      fat stain feces
      fatty acids result not increased
      neutral fat result not increased
      occult bld feces result negative
      red. sub. feces negative
      pH, feces 7.5

      stool culture:
      shiga toxins result negative for shiga toxins 1 and 2

      no shigella, salmonella, e coli 0157, camplyobacter, plesiomonas, or aeromonas isolated

      endoscopy results:
      Gastritis was found in the antrum.
      Microscopic description: Sections A show small bowel mucosa demonstrating intact normal vilious architecture with a normal crypt/vilious ratio. No significant increase in inflammatory cells is noted. THere is no evidence of intraepithelial lympocytosis, ranulomas, parastic organisms, dysplasia, or malignancy

      Sections B show fragments of antral/oxynitc-type mucosa demonstrating marked reactive foveolar/pit hyperplasia and some smooth muscle extension with the lamina propria. There are mild chronic inflammatory infilitrates with no neutrophilic inflammatory activity. There is no evidence of H. pylori organisms, glandular atrophy, intestinal metaplasia, dysplasia, or malignancy

      An immunohistochemical stain performed for H. pylori organisms is negative.

      Sorry its so long. Maybe someone has some ideas...
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    12. missladyj added a post in a topic Waiting   

      I called this morning and am picking my labs and stuff tomorrow.

      I just wanted to say thank you for all of these responses. Yesterday was a pretty awful day. After the doctor's appointment all I wanted to do was cry...and I did a lot. Not because I was sad but just frustrated and pissy. I began to question whether or not any of this was real. Did I make myself sick like one of the characters on House? Maybe 4-5 bm's a day was normal and this was just something I have to live with?

      My bf said it's not normal to go 4-5 times a day, "I go one time, usually around 9:45, 45 minutes after I had my coffee. The brain is powerful but no offense your brain can't make you go to the bathroom 4-5 times a day. There is something wrong and we're going to find out what it is."

      While this is probably oversharing and all of that it was incredibly sweet to hear and made me feel less like a crazy.

      The plan of action right now: take the stupid flagyl so I can prove the doctor wrong. Keep a food diary for the next 4 weeks. At which point maybe everything will become glaringly clear to all or I'll get referred to the infectious disease doc....
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    13. missladyj added a post in a topic Waiting   

      I live in Colorado...will they give me the results? He wouldn't even let me look at them on the computer.
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    14. missladyj added a post in a topic Waiting   

      got my results...well sort of. the doctor told me and i wrote:

      no celiac sprue
      no infection with bacteria or parasites
      no h pylori
      thyroid is good
      nutrition parameters are good

      but because I was in the Philippines for 2 years he says parasites are still a possibility even though I've had 5 negative stool results.

      so I have 14 days of flagyl to look forward to. and then in 4 weeks a follow up visit to see if I still have cramps and if I'm still pooping 4-5 times a day. at which point he will send me to an infectious disease doctor because it is not Celiac because my blood test was fine and my endoscopy was fine. "What about the 21% of people who get false negatives?" "That's not true, these tests are very accurate now"
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    15. missladyj added a topic in Gluten Intolerance and Behavior   

      Anger Rage
      I've seen this mentioned in a few posts and not clear on what people mean.

      I mentioned it to my mom and she was like ohhh yeah you've definitely got that symptom. I don't know if thats her just being a tad bit cheeky or what...I mean I definitely get frustrated very easily over things that I shouldn't. My exbf once said "it's doesn't take much to piss you off and it doesn't take much to make you happy."
      • 5 replies

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