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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.

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6 posts in this topic

I have not taken any tests yet, and I am going to a GI in about a week now, but I want to make sure that I really could be right thinking I have Celiac Disease. So I have a few questions and if anyone could answer them in any way, I would soooooooo appreciate it!!!!!

1. I alternate between constipation and diarrhea, but I have constipation A LOT MORE. Most of the time. Also, I am very late on getting my menstural cycle. I know that diarrhea could be a sign of malnutrition and therefore make a woman miss her menstural cycle, but could constipation also be a sign of malnutrition? (I am not pregnant, I took 3 tests already that are supposed to be 99% accurate, and I know what it feels like to be pregnant; I know that I am not.)

2. Are there any MAJOR signs of celiac disease? A symptom that tells you, you probably have it? (Specifically one of the following) I have a lot of symptoms, but I'm so scared that it could be something more serious. Mine are:

Constipation

Bloating

Bad heartburn, especially when laying down

back aches, come and go

leg cramps, especially when walking

knee pains

extreme fatigue at times (where I am too tired to stand up practically)

Foul Gas

Late menstural cycle

Black and blue marks on legs

lazy feeling in arms

Irritable

Migrane headaches, on and off

3. Also, I was off of gluten for about 3 months (except hidden gluten I didn't know about) and casein and I felt a lot better more often. Now I am back on it everyday because I know I am going to be tested soon. Now, there are always symptoms, sometimes light, and sometimes strong. With celiac, do the symptoms come and go, more severe and then less at other times? Or would every symptom be there everytime all day long? Also, my back aches seem to get worse when I am sitting in a chair or laying down. And when I am walking, it gets better. Would this be a sign of something else?

4. Are the signs of Celiac disease and just gluten intolerant (no celiac) the same, causing the same symptoms? Or are they different? And is it possible for my doctor to check for Celiac disease AND gluten intolerance, or do doctors just test for celiac? And if so, and my tests come back negative, where could I find gluten intolerant testing?

If anyone could help me in any way, I would SOOOOO appreciate it. Please help me! I feel like I'm going to drive myself insane until the doctors appointment! Or maybe until I finally know what is wrong with me!

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Hi -

I kinda chuckled inside when I read your post...don't worry, I also have great empathy for you!

Anyway....I chuckled because I thought, "this person is on the right track...and should not worry!...she/he has a doc appt in one week..."

JUST BE SURE TO GET A FULL "celiac disease blood panel" done...tell you doc to order the FULL SCREEN.

If your antibodies come back positive, or even 'equivocal,' I say go off gluten again...and forget about a biopsy...unless your doc thinks you may have some other problem.

AND, if you find that you still have 'stomach problems,' and want to know if casein is causing your continued problems, go off casein one month later, to see if the rest of your problems go away...

Just be sure to keep in mind that it takes time for ALL of those peptides to get out of your system...and you will have withdrawal problems from casein elimination...I have just recently gone off of casein, have withdrawal symptoms, and have been reading a lot about it...It, and gluten peptides, can take a long time to clear out.

This is why I suggest that you go off gluten first...if all of your problems resolve, you may not need to give up dairy. Plus, withdrawl symptoms from casein could very well complicate your ability to know if having gone gluten-free is helping you.

If you have the funds to do add'l testing on your own, to find out if you have casein antibodies, I suggest ordering Enterolab's stool test - for gluten and casein, and also egg antibodies...and I suggest that you also do their cheek swab gene test, to complete your puzzle.

Anyway...keep eating gluten, until you get your tests done...

Best wishes and welcome!

Gina

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I can't answer all your questions, but your symptoms sound along the lines of celiac disease. There was a thread recently where people listed all their symptoms. Do a search for it if you are curious. My symptoms would also fluctuate (while eating gluten constantly), which I think is why it takes so many people a long time to get dxd. If symptoms aren't consistent, its hard to pin down the culprit.

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Thank you so much for trying to help. I did also order the "gluten sensitivity stool panel complete" from enterolab. This is supposed to check for reaction of the immune system to gluten in the diet; Stool Test for Tissue Transglutaminase (Gluten-induced reaction of the immune system to one of the body's important enzymes, tissue transglutaminase, causing an autoimmune reaction that may damage the intestine and other tissues of the body, and may be related to the development of other autoimmune diseases); Stool Test for Intestinal Nutrient Malabsorption/Intestinal Damage (Malabsorption of dietary nutrients caused by damage of the small intestine, or sometimes lack of enzyme production by the pancreas).

I hope this was the right test to get to find out if I have a gluten intolerance. Does anybody know about these tests? And even if I don't have celiac, but do have some kind of gluten intolerance, would these tests show up positive?

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Enterolab results will show positive if you are gluten sensitive or have celiac. Did you order the gene test as well? That would give you a better idea if you have celiac or not. The Enterolab tests are good..it looks like you've done your homework so don't worry. Its good that you're also getting the bloodtests as well. I dont know how long you've been eating gluten again but if it hasnt been long enough the bloodtests may be negative. Enterolab are suppossed to be more sensitive so if theres a problem it should show up in the test.

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No, I didn't get the gene test. I figured that because I am going to the GI, she will be able to see if I am specifically a Celiac, but in case she does not get a positive for celiac, I wanted to go through enterolab to see if I am gluten intolerant. Am I wrong?

I've been eating gluten for the past 2 months almost. Before that, I was on it, then off, then on, and so on. (Because I didn't have a test done, I felt like I had to "make sure" I was intolerant to gluten, so I would eat it to get a reaction. And I always would, but then I also found myself getting very sick sometimes, trying not to eat any gluten at all. Though I later found out it's in more things that I thought!)

Anyway, all I want is "proof" of something somewhere, because I can't believe it 100% if I don't get that, do you know what I mean? I really am driving myself crazy these days! haha.....it's actually not funny!

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    • celiac disease is psychosomatic
      The following link might be helpful for others experiencing simlar psychosomatic issues with doctors. Although it's only for psychiatrists, I think it should be for all doctors! http://www.psychsearch.net/complaints/ The neuropsychiatrist I saw might fall into this category? I can checkmark:

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    • celiac disease is psychosomatic
      The office is located in another city than where I go. There is no receptionist at the location closest to me meaning patients wait for the doctor to open her closed door to call their names for a consult. So, I would have to knock on her door which would really make her say that I'm sick since I keep writing letters AND showing up in person. The main office is too far for me to travel with road construction going on for the remainder of the year. I suppose I could mail the letter instead. But the staff is very irresponsible so it might be thrown away. The doctor probably told them that nothing needed correction in my records so ignore further requests from me. The other staff member I dealt with seemed normal, but I complained to the doctor about the staff member I dealt with today when she failed to update my phone number that I gave to her a few times (and which she said she updated), which resulted in me showing up for an appointment (I traveled a distance) one of the testers thought she canceled by leaving voicemail for phone number I no longer had. What I mean is I told the doctor that the staff member said she updated my phone number when the doctor asked me why I was there when I showed up for that cancelled appointment. Unfortunately, this staff member answers the phone most of the time. I'm sure she did what she could to make me look bad to the doctor to make her look good because I complained about her. I feel like scheduling an appointment with a psychologist to tell her what happened with this name calling. I'm sure it's against therapist code or I'd like a psychologist's feedback on this doctor's behavior. There are other patient complaints about her on the Internet how she laughs at patient's pain and suffering. I feel that's how she treated me. Update: The staff member called me back to tell me the doctor amended my report and she put it in the mail. I wonder if the doctor discussed what she said to me with another doctor who told her what she did was unacceptable in the medical field. I am hoping my report is amended or new negative comments are not added by the doctor to say I keep writing her letters or something in that regard.
    • 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.
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