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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.

Undiagnosed, Completely New To Celiac/gluten Issues
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Found the site doing Celiac/Gluten Intolerance research today. So glad I found it! 

 

A little background. I'm 29 yrs old, I've had bathroom issues off and on since I was at least in high school. I can remember preempting most school days with an Imodium. Over the years I have had some issues, but nothing major. That's all changed now though. 

 

I was diagnosed with Sjogren's Syndrome in December, 2012. Thankfully, I only had to complain about fatigue for a month or so before I was sent to an internist and then a rheumy. The Sjogren's was confirmed by a lip biopsy in May, 2013. 

 

During this time my normally very very regular (I'm talking 2 hours after I eat I'm in the bathroom regular) bathroom habits started to go awry. On my worst days I'm going 6+ times a day and can go from constipation to diarrhea within the day. I still have near constant joint pain that's not responding to anything but Prednisone (which I refuse to continue due to side effects) and I have brain fog a few days a week.

 

The internist did a ton of blood work, too. My iron was/is low, however, it was determined that I have thalassemia (small red blood cells)  and that caused a false positive for anemia. I'm also chronically low in Vit D, I've done two 6 week mega doses and take 1,000 IU nightly and STILL have low normal counts. Other vitamins, I'm not sure but I take B vitamins like crazy and rarely get the pick me up from them. 

 

I saw a GI doc last week and he's ordered a colonoscopy and endoscopy. What pushed me over the edge to see the 'guts' doc (as my primary so eloquently put it) was the liquid diarrhea (if TMI, sorry) that didn't respond to OTC meds, not feeling hungry, random nights of horrible heartburn (again, doesn't respond to OTC meds) and a major upswing in abdominal pain. He did blood work and said everything was normal except for the inflammation markers. It's my understanding that any inflammation showing on blood work could be from the Sjogren's, but may also be from Celiac or other inflammatory bowel diseases. 

 

A couple of months ago I started having "near fainting" (docs term...not mine) episodes after eating lunch, specifically after meals containing lost of gluen. The first thing my primary thought was an issue with my heart or blood clots from deep vein thrombosis making their way to my lungs. I'm betting though that there's no thrombosis and I've confirmed with an echocardiogram that my heart is good. Has anyone had near fainting or fainting issues after eating gluten? I read online that it's not necessarily a symptom, but thought I'd ask. 

 

Ugh. So all of this has lead me to self diagnose gluten intolerance and jump through the necessary hoops to test for Celiac. I would love to dump gluten completely this instant but I'm impatiently waiting for a confirmation either way before I do. 

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I think you are on the right track. I would be surprised if they don't give you a positive diagnosis for celiac. Although there are other conditions that can cause your symptoms. I'm interested in hearing the results of your "guts" investigation. It certainly is warranted. You've put up with extreme symptoms for long enough, and you are too young to go on like this. If it is celiac, or non-celiac gluten sensitivity, then ditching gluten could prevent lots of future illness. It might even help your Sjogren's symptoms.

 

You might want to consider sublingual vitamin D and B12 and some of the other B vitamins. Also the liquid forms of minerals and fat soluble vitamins. With all your gut malfunction it could be solid tablets and food just is not being absorbed. You can get little bottles of vitamin D3 that you just put a drop under your tongue once a day. Also, sit in the sun a few minutes per day (without sunscreen).

 

Vitamin D needs to be balanced by vitamin A.  I take cod liver oil twice a day and I can feel a difference. Nordic Naturals makes a cod liver oil that actually tastes good. Also some of the minerals are needed to properly absorb and use vitamin D. You can get some of these in liquid form too.

 

With all the problems you are having it is important to pay attention to iodine. Celiac can cause thyroid issues and these could be related to chronic iodine deficiency, but that is not something the doctors test you for. They wait til your thyroid is so damaged you start having bad numbers on the blood tests.

 

I recommend getting a good book on vitamins and minerals. No matter what the tests find, I think you will benefit from doing a little research into what deficiencies you could be experiencing. The best thing is to find the cause of your digestive problems and fix that. Likely it will be gluten. Eliminating gluten will improve your digestion and you should ideally get all your nutrition from food, But if you are behind on some of the nutrients, you might want to supplement until you catch up.

 

This is a lot of overwhelming information coming at you . Take it one day at a time. Remember to relax and have some fun every day, if you can. Things will rapidly improve for you once these puzzle pieces start coming together.

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Thanks so much for the support! I hadn't considered going to liquid vitamins, but I will give it a try. It makes sense that I can take so much in pill form and not see results in blood work or feel much of a difference with the B vitamins if my absorption is off. I'll definitely keep this post updated with results.

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    • Make sure that you ask the doctor how long she has to stop the supplements before you have her levels tested and be sure to take them all with you when you have the appointment so the doctor knows what she is taking.
    • Talk to your doctor. With your family history and symptoms he/she may be able to diagnose based on resolution of your symptoms and family history. Also check with your local hospital if it has it's own lab.  Mine covered any labs at a greatly reduced cost based on a sliding fee scale. Did you have an MRI before they did the spinal? Celiacs with neuro impact will have white spots on an MRI that resemble the lesions found with MS. Many neuro doctors don't know this. I went through what you did and they did a spinal on me also based on the MRI results. If my doctor had know what the UBOs (unidentified bright objects) were I would have been diagnosed a couple years sooner than I was. Make sure if you supplement that you ask your doctor which ones you need to stop taking and for how long before they do a blood test to check levels. Sublingual B12 is a good idea when we have nervous system issues, but needs to be stopped for at least a week for an accurate blood level on testing. I hope you get some answers and feel better soon.
    • Thanks for that.  Will get her tested for deficiencies.  I did take her to a naturopath and get her on a bunch of vitamins, but she never was tested via bloods, so will get on to that, thanks  
    • Hi Could a mod please move this post:   and my reply below to a new thread when they get a chance? Thanks! Matt
    • Hello and welcome Firstly, don't worry about it but for ease your post (and hopefully my reply) will probably be moved to its own thread. That will make it easier for others to see it and reply and also help Galaxy's own thread here on track and making sense.  The antibodies that the celiac tests look for can drop very quickly, so... maybe? Celiac is difficult to test for, there are different tests and sometimes someone doesnt test on one but does on the other. If you can get a copy of the tests and post it here the community may be able to help explain the results.  It may have shown damage to the villi, the little tendrils in your intestine that help you extract nutrients from your food. Celiac is one, but not the only, way in which they can get damaged leading to a vast number of potential symptoms and further making diagnosis a tricky proposition. Definitely, there's a connection. Here's a page that explains it in detail: https://stomachachefree.wordpress.com/2012/03/21/liver-disease-in-celiacs/ Fantastic  It sounds as if your doctors were happy to diagnose you on the basis of the endoscopy? It may be then that you've found your answer. I hope so, you've clearly had a rotten and very scary time.  I'm sure with the positive reaction to the diet you want to go on and get healthy, but I would only add that you should discuss this with your doctors, because they may want to exclude other potential causes if they've not confirmed celiac at this point. Check out the advice for newly diagnosed here: To your family I'd simply say that celiac is a disease of the autoimmune system, the part of our body that fights diseases and keeps us safe. In celiac people the autoimmune system see's the gluten protein found in wheat, barley, or rye grains as a threat to the system and it produces antibodies to attack it and in doing so attacks it's own body as well. It's genetic in component so close family members should consider a test if they have any of the many symptoms. There's roughly 1 person in 100 with celiac but most of them don't know it and are risking getting or staying sick by not finding out.  There's further info for them and you here: https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/ I'm going to ask a mod to move your post and my reply to a new thread, but wanted to give you an answer first The good news is you've found a great site and there will be lots of support for you here. You've also got 'lucky' in that if you're going to have an autoimmune condition, celiac is a good one  Most react really well to the gluten free diet and you will hopefully have much more healing to come! Best wishes Matt
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