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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I'm Not Convinced By My Test Results.
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5 posts in this topic

Okay, so I am a 17 year old girl who has had one blood test to see if I was celiac or had any deficiencies in my nutrient, vitamin and mineral levels. This was about 4 or 5 months ago now... All the tests came back NEGATIVE.

I have been severely lactose intolerant since I was a baby, and remember growing up with a constant stomach ache or upset stomach after eating virtually anything. From ice cream, to pasta, to cake, I was constantly in the washroom with terrible upset stomachs. When I was 11, I began getting severe ocular migraines (where your vision becomes swirly for about 30 mins, but rarely any pain), my eye doctor and family doctor told me that there's no way to determine the cause of these "migraines" but often times food can be associated with them. Around age 13, I was stricken with the most severe stomach aches I have ever gotten. They started out as just a regular stomach ache, I apologize if this is a little TMI, then the pain would increase and increase until my stomach would make this noise (similar to blowing bubbles through a straw into a little bit of water) and this would happen over and over again. It would send my body into a sort of opposite vomiting spell. My bowel movements were often times watery, fatty (kinda with white mucus looking stuff on it, sometimes with undigested food). One minute okay, the next having increasing pain, then severe diarrhoea. I was prescribed Zantax and was told I had IBS and to avoid acidic foods.

When I was 15, I began exercising and eating considerably less processed foods. I ended up dropping from my unhealthy weight of 153 down to my current weight of 130. My weight loss has happened very naturally, over the period of almost 2 years, with only healthy changes as the cause. This helped my stomach very, very much, but I still had many negative symptoms.

In February 2012, I made the decision to stop consuming dairy. I replaced nearly every dairy product in my diet with a soy alternative, resulting in what I considered a severe hormone imbalance. I missed my for the months of February and March, had severely oily hair and skin, and put on a fairly large amount of water weight. I then opted for a more soy-free version of my dairy-free diet - I know use almond milk, and just don't eat any kind of cheese or yogurt or anything like that.

I began training for a half marathon in the spring, began training with a trainer and she recommended I try cutting out gluten to see if that helped the remainder of my still frequent stomach troubles. I did as she said and began a mainly gluten-free diet in July 2012. I noticed it helped very much. My diet consists mainly of fruits, veggies and protein. Occasionally the odd piece of Udi's bread or a gluten-free, DF cookie.

However, I really just want conformation. I had a blood test taken as I said, that came back negative, but the severity that I get sick when I consume something containing gluten or dairy is unbelievable. Is it possible to have celiac disease and have your blood test come back negative? If I go back to my doctor, he will think I'm crazy, but I just am not convinced that something more serious isn't going on.

I am not currently following a 100% gluten-free diet, and haven't been having the most happy insides lately. I'm sorry this is so long, I just wanted to get my story clear in hopes that someone could help or relate or lend me a little bit of advice. I'll be starting university next fall, or travelling am nervous that without a clear diagnosis that I could be putting myself at risk.

The foods I have determined that I am extremely sensitive to are: Dairy (I'm for sure lactose intolerant), Gluten (suspected intolerance or maybe celiac disease?), Peanuts (severe stomach ache from them), Raw Carrots (severe stomach ache and gas), and I'm very sensitive to sugars (I try very hard to avoid any artificial sweeteners, but even natural sugars cause my insides to act up). *I also have suffered from severe eczema and often times break outs around the times I consume gluten.. I don't know if that could have an effect.

Thank you so much for reading this essay of a post,

Brittany

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My blood work was negative, but I responded so great to not eating it. I could tell after one meal--I didn't feel more sick after eating than before I ate. Luckily my endocrinologist agreed that even if the blood work was negative, but having a positive dietary response that going gluten free would not hurt me. She said it isn't like a diagnosis changes the treatment plan. Celiac, gluten sensitivity/intolerance or wheat allergy are all treated by not eating it.

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You may not have been eating enough gluten to have a positive celiac test. No worries--you know what you're reacting to....so simply eliminate ALL gluten for life. You'll be glad you made the decision.

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If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

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If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

That's definitely a point I hadn't put much consideration into. Thank you!

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    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
    • Nature's Bounty Protein & Vitamin Shake Mix
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    • celiac disease is psychosomatic
      I am assuming United States- It has been a long time since I studied health info law, but I doubt this part has changed.  A doctor would not change the record just because you said its wrong.  They might make a correction if they remembered or had actual facts (like a lab test read incorrectly or appearing later).  What you are allowed to do is write a letter to be included in the record.  You need to put in larger letters at the top, something like "This note must be included with any release of information from my medical record".   I am not sure how it is handled with electronic releases these days.  You could contact a medical records department (ask for the release of info section)  at a large hospital near you and ask how they handle it.  Be nice and tell them it isn't a problem with their facility but you know they are the experts.  I would urge you to make the note short and not nit pick.  State the big basic facts that you don't agree with and don't worry about the little things.  People will not read a really long note or it will make you look crazy (in a bad way  )   And for the apt with your neurologist.  Don't bring it up, see what he/she says first.  Half the time they don't read all the little details or even receive more than a brief - tests run & results and maybe a brief summary.  You might be surprised, your doc might think the person is a bit of a jerk, but hoped you might mesh with them. I recently had my doc agree with me when I said I couldn't stand another doc that had been in her practice.  lol
    • celiac disease is psychosomatic
      I called this doctor's office again to inquire if my medical records have been corrected. When I called to amend my records because there was inaccurate information, the staff member told me that I need to write my complaint in email to doctor. So, that's  what I did. The doctor wrote things I said that I didn't say, which changed the meaning of what I said so I wanted to correct that. I talked to a different staff member today who irritated me in the past by saying things she was going to do which she never did. Her tone of voice is condescending and argumentative like she refuses to help you or that's probably what makes me feel irate. Today she said the doctor wasn't going to commit fraud by writing something I told her to write. I don't feel irate when I talk to the other staff member who answers the phone. Anyway, this staff member said she printed my email for the doctor to read, and she'll reply when she wants to reply (never). I said that it's not the doctor's choice to choose whether or not to correct inaccurate information in medical records. I said I think by law, it must be done so if the doctor continues to ignore my request to correct inaccurate information, then I should probably file a medical complaint somewhere. Finally, the doctor called me back. She asked what was inaccurate when I said I wanted to correct the incorrect information. Then, I asked if she read my email. She said she did not have time to read patient STORIES. I said a good doctor would make the time to read a request to correct inaccurate information in a patient's medical record. Then, she said I'm sick to keep writing letters to her. I said I only wrote one email to her and it was because a staff member said that is how to amend the inaccurate information. She added that if I really had physical symptoms, I would not have been able to get a college degree or write letters to her. Although I explained to her during my consult that I took online classes and did homework in bed with lots of breaks, she thinks I must be pretending to have symptoms. I also explained during my consult that half of my dizziness and migraines are gone since being on a gluten-free diet. Yes, this makes sense why her office makes me feel so irate! I ended the call by asking if she was going to correct the inaccurate in my medical records. She kept rambling on how only sick people keep writing letters to doctor. Again, I told her I only wrtote one email to her and that's because her staff member told me to correct inaccurate information in record. The staff member recommended this instead of filling out a record amendment form, which I don't think they have. She said file a complaint like it was a joke. Since my neurologist referred me to her when I inquired about help for my memory problems, I'm afraid she will tell him negative things about me. Her office is just across the hall from his. Doctors are more likely to take the word of another doctor over a patient. In contrast to this doctor, my neurologist is a real competent doctor. Do you ever think that sometimes doctors are crazy, but they get away with making others think it's the patient who is crazy because they are more powerful? This doctor is a neuropsychiatrist. I will never see a neuropsychiatrist again due to this bad experience.  My appointment with the neurologist is in another week. I don't know if I should briefly mention my bad experience with this doctor so he won't believe her if she tells him that I am faking my symptoms. It would be like I was faking my whole life if I was faking my symptoms. Maybe I could say something like the brain testing wasn't very helpful with that doctor since she assumed my symptoms were all in my head  because I graduate from high school and obtained a college degree in the past. I also told her during my consult that I received average grades in high school because I often went straight to bed after school not having chance to do homework. This feels like abuse or abuse of power from the doctor. I wish I recorded the phone conversation with this doctor calling me names.
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