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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 dark-angel_warriore

    • Rank
      New Community Member
    • Birthday 01/20/1990

    Profile Information

    • Gender Female
    • Interests music, metal, piercings, tattoos
    • Location Woodstock, ontario

    dark-angel_warriore's Activity

    1. dark-angel_warriore added a post in a topic Frustrated, Just Need To Vent.   

      I had written a long text but I will keep it to : I disgaree.
      The surgeon is NOT a G/I, I have no idea if he will have the results since the test was ordered by my family doctor and not the surgeon itself.
      Waiting a month and a half to get confirmation of tests results does not seem right to me. If it was a diagnostic test perhaps, but we were doing nothing but confirm, I am not sure what I need to "discuss" with her, if it is not important.
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    2. dark-angel_warriore added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Frustrated, Just Need To Vent.
      So I posted about a month ago regarding positive blood work, various symptons, and my fear of going through the endoscopy.
      SOOO, I got it done last monday (a week and a half ago).
      Everything went well, I thought I was asleep, but apparently I just don't remember being awake.
      Anyways, I had a pleasant experience at the hospital, no complications. Though they sent me home about 10min after I regained concsiouness, without explaining anything to me.
      I did not think to ask about how it went.
      4 days after the Endoscopy, I get a call from the surgeon's office saying that the surgon would like to see me to discuss the procedure that was done, and that they would give me the soonest appointment (today, so less than a week after the phone call).
      Because I am confused about what the surgeon would want to talk to me about, I called my family doctor (who ordered the endoscopy), to see if she had received the results.
      Apparently she received the results last week, just put it in my file without contacting me, and closed it.
      So the "nice" secretary told me " it is your reponsability to book an appointment to discuss test results".
      It would be nice if I even knew the results were in!!!!!!!!
      She said that my doctor "PROBABLY" put the results in the file without saying anything because it did not show anything important.
      We wern't looking for anything "important" we were looking to confirm if it is Celiac.
      So now they are giving me an appointment in a month, because they need to leave room for emergency appointments.
      How is anyone supposed to appreciate doctors if they do things like that ?
      Now I am confused as to why I am even taking time off of work and losing pay to go see the surgeon, and then losing pay AGAIN to go see my general doctor who does not seem that concerned.
      I have been "gluten free" (My boyfriend forgets and always cooks gluten products along with my gluten free products (on the BBQ, on serving plates, etc...) and I have been feeling worse than I did 2 weeks ago.
      I know I should just wait until the appointment with the surgeon tonight, since he probably also has the biopsy results himself
      but I just wanted to say "grrrr"
      *end rant*
      • 4 replies
    3. dark-angel_warriore added a post in a topic Positive Blood Tests, Not Wanting To Go Through Endoscopie   

      i am just scared of the unknown I guess.
      I am scared if would hurt, I am scared he will find something more, like other damage perhaps...
      I am not sure.
      BUT the appointment is next week, he said that I should not remember anything even though I will probably will it when it happens.
      I don't react well to sedatives, they don't always work on me, but we will see.
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    4. dark-angel_warriore added a post in a topic Not Sure How To Proceed With Diagnosis..   

      This might not help your general question but I wanted to share my story with you because I have gone through something very similar (still going though it as a matter of fact)
      I started really feeling the affects of Celiac after my pregnancy 4 years ago (just like you it was somewhat triggered )
      But before that i been told that my ovaries were also double the size that they should be. However I was told that they would try to make them go down with medication (I had not had my period for 7months, was not  pregnant and always had sharp pains).
      I was never diagnosed with IBS, but have been proned to constipation for years and years (way before pregnancy)... I just assumed it was the way my metabolism worked and blame the bloating on the fact that I can not burp (not a joke, I physically can not burp, Gas does not come back up). Plus I was always too shy to ask my doctor.
      To my understanding the most accruate tests are the blood tests and the biopsy... But I FULLY understand you not wanting to go throught he gluten chalenge.
      When my blood work came back positive, I immidiately started a gluten free diet, started feeling better (mind fogginess went away) after about 48 hours.
      2 Weeks later (last week) my doctor told me I had to go back to a gluten filled diet because she wanted to make sure and sent me for a biopsy scheduled over 3 and a half months later.
      I cried... I went back to eaten Gluten, I swear I was the worst person to be around for the first 5 days... then I remembered what it was like to be in pain again all the time...
      the ONLY reason why I am going through this, knowing that a gluten free diet makes me feel better, is because i WANT to be 100% sure.
      In your case (sorry i didn't mean to go on about me, i just wanted to illustrate ) you have already been gluten free for so long, and you already know you are feeling better.. I would say that it is NOT worth the gluten challenge, not at this point at least, by now your stomach has probably healed and it would take a while for the damges to be visible again.
      The genetic test is indeed an option even though it will not tell you whether you are positive or not, it will tell you whether or not you carry the gene. And if you carry the Gene then that should suffice.
      You have already done the pros and cons by saying "so I'm not sure how to get tested or if it is really important"

      By the way, I was diagnosed with dermatis when I was little and was told that it was a form of "under the skin eczema", and my doctor (when I got diagnosed) told me that she has kids that had their arms and legs full of "eczema" tested positive for Celiac, and it then went away without Gluten.
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    5. dark-angel_warriore added a post in a topic Positive Blood Tests, Not Wanting To Go Through Endoscopie   

      i was born and raised on a French Island, have no family in Canada, and even my aunt who is a nurse had no clue what Cliac was.
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    6. dark-angel_warriore added a post in a topic Positive Blood Tests, Not Wanting To Go Through Endoscopie   

      To be completely honest with you, the tax return thing isn't my biggest worry, and being audited isn't a big deal to me as we only claim for work income (pretty straight forward).
      I would be the only one to eat glutten free in the house (unless my son tests positive when my doctor decides it is time to test him) so we would not be spending THAT much more, may an extra $5-10 on groceries every week, depending if I get baked goods.
      But I just want a definite "YES you have it" for some reason, I don't want any "oh it might be positive because you are too stressed out".
      I don't like going in the vague of maybes... But that is just me being a control freak and wanting to have control of my life (Celiac??)lol
      But I am really scared of the enoscopy
      I think I might regret if if I don't go through it, for my son, and my family (who would have to get tested even thought they are over sees and Celiac is not even close to being well known in Europe)
      So I guess I just need to suck it up eh.
      • 0
    7. dark-angel_warriore added a post in a topic Positive Blood Tests, Not Wanting To Go Through Endoscopie   

      I don't remember any difference when I was pregnant. I was REALLY depressed when I was pregnant, I cried everyday and had really bad thoughts.
      But I also selpt A LOT, about 12 to 14 hours a day  since I did not work at the time, so I was well rested by the time I woke up.
      But that was 4 years ago and a REALLY bad experience (i love my son to death, but the pregnancy hormones did not do me any good at all).
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    8. dark-angel_warriore added a post in a topic Positive Blood Tests, Not Wanting To Go Through Endoscopie   

      Thank you for the quick answers .
      I figured claiming it would not be very beneficial for me., but I figured " oh hell, a little bit is better than nothing"
      I guess I am just really scared.
      I contacted my family doctor to see if I could get another appointment closer to where I live (because the appointment was set in a city that is an hour away from me, and I would have to take a day off, and have my boyfriend take a day off for the sole reason of driving me since I would be unable to).
      She at first refused, and then when I explained why she said that I would have to find the doctor myself and she would send the referral.
      Within 10min of me making phone calls I found a surgeon who does the procedure (no gastroenterologist in my area, but this doctor has done testing for celiac before).
      She said they are booking for the begining of June right now. Which means I will probably only have to suck it up for 2 or 3 weeks.
      That I can do
      Havn't received confirmation of my appointment *fingers crossed*
      I noticed a lot of people simply skipped the endoscopy stage.
      I have been eating a fair amount of gluten in the past couple of days, but if I get the appointment in 2-3weeks then I won't have to gluten myself every single day anymore.
      • 0
    9. dark-angel_warriore added a post in a topic Anxiety!   

      Yes, I have that.
      • 0
    10. dark-angel_warriore added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Positive Blood Tests, Not Wanting To Go Through Endoscopie

      I have been reading numerous posts prior to posting, and I know I am not the only one to go through this but I guess I am looking for people who actually have done it.

      I live in Ontario and I am a 23 years old female (even though that does not change anything it sets in with the rest of the story).

      Here is my story : After puberty, I started having fainting spells constantly... We did numerous tests, and all of them came back negative, expect for an iron deficiency which was unexplained. At that time I was 14-15 years old.

      The years went on, other issues came up, at 17 I was diagnosed with unexplained infertility, my iron level was still very low. I had very long cycles (3 to 7 months), which often had to be triggered with medication.

      After a 4 months treatment on Clomid, I became pregnant at the age of 19. Knowing that my chances to have a child were very low I decided to keep my son (nothing to do with the story either but I just wanted to point it out for the rest of the story as well).

      I had a fairly easy pregnancy. But after having my son, I had an unexplained hemorrhage.

      Anyways, after having my son things started going down, I was going through a really rough time, started losing a lot of weight (I was only 125lbs before I had my son, 115lbs a month after I had him).

      Anyways after I had my son, I started noticing that I was dizzy very often, my vision was getting worse, I was always constipated (unless I drank beer).

      I started consulting different doctors (mainly walk in clinics because I did not have a family doctor for myself).

      One doctor told me that my dizziness was due to the fact that I stood up too fast probably (??????)

      Another doctor told me that it was probably just the way I held my head (????????)

      I kind of gave up at that point.

      After consulting another doctor for getting the flu back to back without a couple of months. The doctor finally decided to do some blood work, Celiac wasn't tested then, but my vitamin levels were.

      It came up that my iron was extremely low. I was put on 3 pills of iron a day for 3 months.

      3 months later I finally had a family doctor. I got tested and my iron level was still low, but since the iron pills were making me sick (so I thought) I was told that my body could probably regulate itself since it was almost at normal levels.

      About 6 months later, I went back to the doctor's for unrelated problems (so I thought), my doctor told me that my issues were more than likely due to stress.

      We tested for my iron again and it was very low again, I was put on another 3 months treatment.

      I never ended up going back to get tested because I was tired of doctor's excuses.

      Then my boyfriend noticed that I was losing my hair, I had a bald spot the size of a tennis ball... I was FREAKING out.

      I assumed it was due to a lack of vitamins, so I started taking vitamin supplements on top of the iron pills that I had been taking for about 5 months now.

      By that time, the dizziness has gotten worse; I would faint after moving the bed, or taking 2 shovels full of snow, or even going up the stairs.

      My hair had gown an inch in 3 years, and I kept having unexplained bladder issues.

      My mind was always foggy, my vision had gotten worse, I had changed prescription twice within a year.

      My stomach was always feeling upside down, but I blame that on the iron pills or my cycles.

      I would go to the bathroom only twice a week, something even less (but I was used to that so i thought that was normal). The least I would go was every 2 days.

      I went to the doctor's after 2 months of being of vitamin supplement and my hair not growing back.

      She said it was Alopecia and that it was probably due to stress (AGAIN).

      But she said that it was time to test her iron levels... as she was saying that, it is like lighting struck her, and she told me that perhaps I should take the blood test for Celiac decease.

      The only downfall was that the test was $60. I get to the lab, and the test was in fact $125 for a full test.

      I needed to know.... I was supposed to have the results within 24 hours.

      A week later, I still had not received a call from my doctor's, I assumed it was good news. But I figured I would call to make sure that my iron level were okay and that I would be ok to come off of the iron pills.

      When I call the receptionist tells me "Oh you were next on my list", instantly I think "oh noooo, what is wrong?", she says " The doctor would like to see you, Your blood work is positive for Celiac, but she says it is not urgent so I will book you for our next available appointment in 2 weeks."

      I started researching Celiac a little more deeply and EVERYTHING just made so much sense.

      My grandmother had died of small intestine cancer, even though she always ate healthy.

      I decided to not wait for my doctor and try out the gluten free diet. Within a week my vision was clear as water (still with glasses on of course), my brain was not foggy and I cleaned my car for an hour and a half without fainting. I was excited, FINALLY, finally I knew what was going on, and finally I knew that I was not just crazy.

      After 2 weeks I started having normal stools, even though I still only went to the bathroom every other day, I did not have to go 5 times to the bathroom in order to get anything out.

      On the day of my appointment, the doctor told me that my iron level was still very low, my Vitamin D level was extremely low, along with my B12. She had not tested for any other vitamin levels but she assumed that my other vitamin levels were low also...

      Now it explained why I had had to slap myself in the face in order to stay awake when driving.

      2 out of the 3 tests came up positive (TtG and EMA). However the doctor said that she wanted to make sure that it was not a false positive.

      She said she would sent me for an endoscopy, HOWEVER I would have to eat really bad (gluten) again until the appointment.

      I prayed that the appointment would be scheduled soon... I've dealt with issues all of my life, I had no issues going through another couple of weeks of that.

      Though I got the call yesterday and my appointment is at the end of august (in over 3 months).

      After the appointment I started eating gluten again. My vision started getting blurry after the second day, I started falling asleep at the wheel within 12 hours, my stomach cramps, acid reflux was back within 12 hours.

      I refuse to go through this for another 3 1/2 months.... But I feel like I would be a woos if I just gave up and did not go.

      Plus, let's admit it, Gluten free food is expensive, being a home owner, mother of 2 and having a boyfriend who eats very well, financially we just get by. The extra expense isn't easy to deal with.

      In order to get a tax refund for gluten free food, I need a note from my doctor...

      Has anyone done it? Waited 3 months+ after a positive blood test???

      Please re assure me, I felt so sick last night that I started crying and told my boyfriend that I could NEVER do it.
      • 16 replies

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