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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.

Just Need To Vent
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7 posts in this topic

It has been two weeks since I had my blood work done and I called the GI's office Wednesday and she still hasn't called me back to let me know what they are or mean. I am getting very frustrated and depressed. I feel like I will never find out what is wrong and will always suffer. My appointment to follow up with her isn't until May 25th! I cannot and will not wait that long to find out if I actually have a disease or not. My opinion is if you can't be courteous enough to give a patient a call back about theirs results then do not tell them they may have a disease they will have for the rest of their lives! Its crazy and stressful for us. I guess I vented enough for now. Thanks for anyone that listens and hope your day is going great!

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I called the doctor back and she said all of my labs were fine other than the anemia. I know better. Both gliadins where positive. She said no IBD on colonoscopy, no food allergy, just anemia and that I am fine. I know better. I think I may start the diet on my own and see for myself. I am so upset right now all I can do is cry. I'm right back to where I started, sick and no idea why. I can't afford to lose anymore weight. I am already underweight and depressed. I eat all the time, love food so something is going on. I have no idea what ingredients or things to avoid on the diet so any help right now would be appreciated.

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Beverly,

I am so sorry that you are suffering so much and not able to get a definative answer to your problems. With both gliadin antibodies positive they should have given you a biopsy. They may still want to do that. You could request one, if you want it. It can be frustrating to have to wait so long for a follow-up appointment. It is as if some doctors just doesn't understand the extent of our suffering. If they were ill with symptoms like ours would they want to wait 6 weeks to see the doctor?! I don't think so.

Have you checked into Enterolab ? There tests are more sensitive than the blood tests and can pick up gluten intolerance in it's early stages. But they are not widely accepted by most doctors. Some do accept them though.

You could start the diet now, but it will affect the biopsy if you choose to have it later. If you plan to try to get the doctor to do a biopsy, then you should wait to start the diet. If you would like to just do the diet and forget the "official" diagnosis, then many of us here can help you get started.

God bless,

Mariann

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I know exactly what you are going through! I am going through the same thing. I was so very sick this week and not only could I not talk to the doctor I could not even talk to a nurse. After 3 days of trying I called my primary care doctor and had them run interference for me. They could not tell me about celiac since it wasn't mentioned in the report so I have to wait for my appointment. At least my primary listened to me and helped me adjust my medication. I dont understand how a person can be suffering and they just expect us to wait. We still have lives and jobs and family we need to take care of.

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Sounds like you need an endoscopy, and really with positive antibodies your dr. should have suggested that as your next step. I would either change drs. and request that, or demand that from this one. It's too important to allow them to ignore it. Blood work seems to say very little about a person's health at times, because it always depends on exactly what the dr. was testing. My blood from my GI doc came back with terrible results, showing I wasn't recovering from this disease as I should be. Then, blood work that my orthopedist had taken checking other parts of my health came back so good he said I had the blood work "of an Olympic athlete." The difference can be huge depending on what was checked. Don't feel alone in this, remember, many have suffered like this and still came out of it ok in the end, so just hang in there and keep being proactive about your care.

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Thank you all so much for your replies. My husband took my test results to a doctor he works with(he works in medical records in a hospital) and the doctor said the IgA level was negative and that the ranges beside of it wasn't the right ones to go by but the ones to the IGG. My IGG was positive 33 and my IgA just has <20 so it is negative. The doctor said I may have had something for a while from both pregnancies and am now its going into remission and it could be nothing but simply pregnancy, that it can cause all kinds of weird things. Also he said I should request to have the test to determine exactly what may be causing my anemia. I've had it for years and never knew I could do that but he said they only do it if you request it. He said I may just not be absorbing iron. I am surprised the GI didn't even mention IBS. I always thought that if everything came back negative then that was their usual diagnosis. I still don't know what is wrong but I'm feeling better. Again thanks for all of your help!

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Hello All,

I am new to the group and the whole Celiac life. Beverly, I had testing a few weeks ago, I also had some parts came back negative, but my IGG was positive at 68. My Dr. says that indicates Celiac. I've started the diet, but it has been so hard and frustrating for me.

Stephanie

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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