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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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3 posts in this topic

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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    • Can treatment for Giardia reverse active Celiac
      I'm not a doctor or expert but I've done a lot of reading and I believe anything that causes major inflammation for the small intestine can cause false positives for celiac antibodies. Sometimes people with Crohn's will have positive celiac tests as well.  I wouldn't be surprised in the least that someone with a bad case of Giardia would come up positive.  Now, eventually, as you fully recover from the giardia infection you should go back to normal levels but if you don't you most likely have Celiac as well.  From what I understand, Celiac doesn't go into remission though it can be latent in people for years. 
    • Sjogren's, Celiac, or both?
      Hey, happy to see your posting, Fenrir.  I hope you are doing well!  
    • Sjogren's, Celiac, or both?
      Well, you do not HAVE to get tested, but since Celiac Disease is genetic and you have kiddos, you should seriously consider the pros and cons. Take for instance, my hubby.  He went gluten-free over 15 years ago per the very poor advice of his GP and my allergist.  "Try giving up wheat and see how you feel."  Well, it worked.  No more sinus infections, feeling achy like he had the flu, etc.  He seriously struggled the first year without a proper diagnosis, but eventually good health became more important than rye bread.  Twelve years later, I was anemic (well I have been all my life)  and went for a routine colonsocopy because all my friends were getting them (the perks of the over 50 club).  During my GI consult he recommended getting scoped at both ends because he suspected celiac disease.  I could not believe it!  But blood tests and my biopsies proved that I had celiac disease.   Hubby will be the first to say that I have had more medical, family and friend support with a formal diagnosis.  He refuses to do a gluten challenge.  His mom was diagnosed with MS and literally died from malnutrition, so we suspect she had celiac disease.  He definitely has a problem with gluten.   Thankfully, my dx has allowed for my daughter to be tested every few years (even without symptoms).  She does not have celiac disease or any other autoimmune disorder yet.  I say yet, because the gene pool for AI issues is huge on both sides.  Good news is that cancer is rare but you never know.   So, this is a decision you will have to make.  An endoscopy requires a much shorter challenge.  Something to consider.  Gene testing too will help rule out celiac disease and might be the first thing to consider as you do not have to be on gluten for that.   I wish you well! 
    • Sjogren's, Celiac, or both?
      Everything you listed above very well could be Celiac Disease and not Sjogren's, but people with one autoimmune disease are at a higher risk of getting another one.  Your GP clearly is working with old knowledge in regard to Celiac Disease. There are probably more people who suffer from constipation from Celiac than loose stools. I know for me I never had diarrhea at all, but I was backed up something fierce.  I also had swollen joints, headaches, abdominal pain, memory issues, high liver enzymes, fatigue and general cloudy head.  Not many of these are symptoms an uninformed Doctor would think to associate with Celiac.  You really have to show up prepared to be your own advocate, tell the doctor that according to many of the GI specialists who work with Celiacs (see University of Chicago's celiac disease Center) these are all symptoms that warrant a proper workup for celiac disease.  It took me 6 months, two biopsies and an unneeded surgery to get diagnosed and that isn't as bad as some. 
    • Can treatment for Giardia reverse active Celiac
      So interesting!  Please keep us posted!  
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