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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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7 posts in this topic

I have been recently doing much research into different health issues and was led here. I was hoping someone could help to steer me a little bit. My health story, as brief as I can make it is: started noticing symptoms like chronic and debilitating fatigue, joint pain and brain fog after the birth of my first baby almost six years ago. I thought it was just being a new mom but it never went away. My first doctor visit was one year later and found out shortly after that I was expecting, so I chalked it up to being pg again. After birth of baby #2, symptoms remained and I went to three differnt drs about 6x over the last 4 yrs. Symptoms now include bloating, cramping, gas, pain in my wrist bones and knees, and easy bruising. Also I am having a hard time losing some extra weight and we have been having a hard time getting pg again. (It ususally takes me about 3 months to get pregnant, and we've been trying for almost a year now). I have always had to direct my doctors in suggesting what might be wrong with me. I have been tested for lyme, arthritis, anemia, thyroid and gluten intolerance (twice). My test results for that were as follows:

1st test 1 1/2 years ago - Gliadin IgG was 14.9 (<25 = neg) and Gliadin IgA was 5.0 (<25 = neg)

2nd test in Nov 04 - Gliadin IgG was 22.9 (<25 = neg), Gliadin IgA was 4.9 (<25 = neg), and endomysial IgA was neg.

Both times these test were done I had been gluten free for at least two weeks. I was wondering if that could affect the results, and if the tests I had done are reliable. I notice that when I go gluten free, my symptoms go away - but my doctors have told me it's basically all in my head. I'm getting very frustrated and sad, because my fatigue is so extreme that there are days I can only lay on the couch while my children entertain themselves.

Autoimmune diseases (rheumatoid arthritis, diabetes, and thyroid disease) are abundant in my immediate family and I just recently found out I am allergic to rice, dairy, nuts and some grains (as is my dad). Is celiac an actual allergy? The allergy test I had done measures whether my body is producing histamine in response to a certain food by measuring IgG antibody production. If I had a gluten intolerance would it have registered on this test? I'm trying to make sense of my symptoms. It's really hard to be commited to eliminating gluten (it's in everything!) when my doctors have said that is not my problem, even though I notice positive dietary results. I wonder if it's something else I am reacting to, and not the gluten. I don't trust myself anymore because the doctors have proved me wrong with every idea I come up with in terms of what is affecting me. They have told me it's either depression (I love my life and only feel depressed when I imagine feeling this horrible for the rest of my life), not enough exercise ( I work out 5x a week), or a sleep disorder (does that really cause cramps, bloating and gas?).

Any direction or help would be greatly appreciated. I'm learning to rely less on my doctors and more on what I know to be true with my own body, and the experiences of others. Thanks in advance!

Sorry, I tried to make this short but see how long it is now!

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Wondering--

Well, you definitely have a lot in common with other Celiacs! For one, you noticed your symptoms (which can be from Celiac), after a pregnancy, which is when some women notice their Celiac being triggered initally. All of your more recent symptoms are common for Celiacs too...the only one I haven't heard mentioned myself is bruising. (Do you have swelling of the ankles too ? Random question...)

Being gluten-free before receiving your blood test can definitely affect your results. For the most accurate results you need to be consuming gluten for several weeks. (Someone else can maybe give more info on how long is needed to eat gluten before rcving a test...)

Don't let your doctors discourage you by saying its all in your head--whether you have Celiac or something else--your symptoms are definitely not in your head ! Some doctors use that kind-of response when they are stumped. Try a new doctor if need be. If you let us know your area, someone might be able to recommend a doc for you.

Autoimmune illness (especially thyroid) and other food allergies are common for Celiacs. Celiac is not classified as an allergy however. It is an autoimmune disease where your immune system damages your small intestine when you consume the protein gluten, found in wheat, barley, rye and "oats". Go here to read about exactly what Celiac Disease is: http://www.endo-world.com/celiac.htm#1

Glad you have joined us here and that you are taking your health into your own hands. As you will soon find, that is what many of us here have had to do! I'm sure others will respond to you soon. But I suggest, finding a new doc if you need to, and get tested again after consuming gluten for a period of time. There are other labs that will test you also, besides using your doc. There are also several things you need to be tested for. I'll let Kaiti post those specifics, b/c she's good at it :)

Good luck to you, and keep us updated on your process !

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Looking at the tests you had done you did not get the full panel you should have received. You do need to be on gluten during testing or it will affect your test results.

This is the panel you should get and the tTG is the most specific and sensitive test for celiac.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

If all of your testing you get done shows negative then it's possible that you a gluten intolerance and just not full blown celiac yet.

The symptoms are definitely not in your head so as Jen said, do not let the doctor tell you otherwise. You may in fact want to consider another doctor who may be a bit more informed about celiac. You'll find that alot of doctors don't know what they should about it. Also, pregnancy and childbirth can trigger celiac to activate.

Have you had your thyroid checked? I have graves disease (hyperthyroid) and thyroid issues are common among celiacs. In fact, my endocrinologist told me that she rarely sees celiacs with just celiac.

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regardless of what your (likely not-well-educated on celiac) doctors say, the dietary challenge is a test in and of itself. if you know what makes you feel better, stick with it!

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"I'm learning to rely less on my doctors and more on what I know to be true with my own body, and the experiences of others."

Same here. I don't have a whole lot of faith in doctors since I was told that my DH was "all in my head". Please.

If you feel better on the gluten-free diet, by all means continue it no matter what the doctors say. Many doctors aren't willing to accept that food intolerances can cause serious health problems.

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Vitamin K deficiency can cause easy bruising. I use an injectable medication so, needless to say, I noticed it right away! :blink:

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regardless of what your (likely not-well-educated on celiac) doctors say, the dietary challenge is a test in and of itself. if you know what makes you feel better, stick with it!

Ditto Tiffany!!

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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
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