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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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The integrative MD has me doing the saliva and stool testing right now (just shipped the vials yesterday).

Did any of you ever have night sweats or heart palpitations when you were consuming gluten? Also, I have been eating gluten intentionally until the blood-draw tomorrow.

Not saliva, not stool testing, hon...you need the CELIAC panel.

It is more than 2 tests.

As I was posting this, I see you also posted.

(and yes, I had heart palps. Many of us did.)

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Not saliva, not stool testing, hon...you need the CELIAC panel run that Lisa listed above. It is a blood test.

As I was posting this, I see you also posted.

(and yes, I had heart palps. Many of us did.)

OMG - I COULD CRY RIGHT NOW!!!!!!!!!!!! I am SO GLAD I found this forum!!!!!!! I hope you don't mind if I ask questions along the way. I am scared, yet I will be relieved if it is relative to gluten. I hope my bladder is not damaged due to the gluten.

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As the above poster mentioned, when you have an immediate family member with celiac, the recommendation is to be re-tested every 3-5 years. It is not elective and your insurance should cover it without batting an eye. Chronic constipation is a big celiac flag as well, and you should be tested again because of that. Then, by all means, do the diet! As someone with both celiac and interstitial cystitis, going gluten and dairy free has changed my life! Bladder spasms are hard for those who haven't had them to understand, but they are crippling! I wish more docs knew of the connection to gluten!

Bladder spasms are the WORST. It is crippling and people do not understand how it feels, nor can they be sympathetic to the pain. How long did you have IC before being diagnosed with celiac? How are your symptoms today? I just started having the bladder symptoms early May 2012. My urologist thought it was IC, but decided not to do the potassium challenge to test the bladder. He is the one who ordered pelvic therapy. GOSH, you are all the BEST! SO glad I found some people who understand me!!!!!!!

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Ang - I too came across my gluten issue as the result of bladder problems. The whole thing started with what I thought was a bladder infection (used to get them all the time in college). After two rounds of antibiotics with symptoms getting worse instead of better, I was at my wits end...literally. I poured thousands of dollars into the naturopathic doctor b/c I was so angry with my regular physician for giving me antibiotics when "no infection could be found initially". Had the NP at my OB office diagnose Interstitial Cystitis as well...but after reading about it and doing the diet, I never felt better and I was convinced they were wrong. My culprit? Candida - I still think I am gluten intolerant and won't go back to eating it, but I can't have the gluten-free stuff either. If I have too many carbs in a day or too much sugar, I can feel my bladder going nuts. Glass or two of wine? Yep, bladder lets me know it's not happy! I'm hoping once I get the candida under control, I can have the occasional gluten-free treat, but for now - no sugar/carbs for me!

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Ang - I too came across my gluten issue as the result of bladder problems. The whole thing started with what I thought was a bladder infection (used to get them all the time in college). After two rounds of antibiotics with symptoms getting worse instead of better, I was at my wits end...literally. I poured thousands of dollars into the naturopathic doctor b/c I was so angry with my regular physician for giving me antibiotics when "no infection could be found initially". Had the NP at my OB office diagnose Interstitial Cystitis as well...but after reading about it and doing the diet, I never felt better and I was convinced they were wrong. My culprit? Candida - I still think I am gluten intolerant and won't go back to eating it, but I can't have the gluten-free stuff either. If I have too many carbs in a day or too much sugar, I can feel my bladder going nuts. Glass or two of wine? Yep, bladder lets me know it's not happy! I'm hoping once I get the candida under control, I can have the occasional gluten-free treat, but for now - no sugar/carbs for me!

So, what is your treatment for the Candida? Sorry to ask so many questions. I am new to all this. I have been a relatively healthy person and rarely take any kinds of meds. I am a workout nut and always thought I was super healthy.....until this happened in May 2012. I tried the IC diet, too, but did not get lots of relief. Did not try it for too long obviously. I doubted the docs since day 1, which led me to where I am today. THANK YOU!!!! :)

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OMG - I COULD CRY RIGHT NOW!!!!!!!!!!!! I am SO GLAD I found this forum!!!!!!! I hope you don't mind if I ask questions along the way. I am scared, yet I will be relieved if it is relative to gluten. I hope my bladder is not damaged due to the gluten.

I doubt your bladder is damaged, especially if your tests are all normal. Don't start worrying about that or anything else until you know what the underlying cause may be---which could very well be gluten/celiac.

(BTW, I thought Lisa had posted the celiac panel list on this thread (my mistake-- I am answering in two threads at once and they both involve the celiac panel) :lol: )

Karen has provided the link which explains the celiac panel.

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I doubt your bladder is damaged, especially if your tests are all normal. Don't start worrying about that or anything else until you know what the underlying cause may be---which could very well be gluten/celiac.

(BTW, I thought Lisa had posted the celiac panel list on this thread (my mistake-- I am answering in two threads at once and they both involve the celiac panel) :lol: )

Karen has provided the link which explains the celiac panel.

THANK YOU!!!! Trying not to worry needlessly about the bladder. The urologist did various CT scans, bloodwork, urinalysis, etc. All were fine, except scaint traces of blood in urine (microscopic). He did not feel the need to test further on the bladder, so no scope or anything done. I, deep in my heart, believe the pain is stemming from the stomach/bowels as I am not regular nor never have been for YEARS!!!! I mentioned this earlier, I never knew constipation could be a sign of celiac - I assumed it would be IBS-like symptoms since the body would try to rid of the gluten. Definite learning process for me. I only know limited amounts of info on gluten - enough to cook for my brother when he is here to avoid cross-contamination. Never would have known the overall effects on other organs, including the bladder. THANK YOU ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :)

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Treatment for candida is to follow the candida diet (you can look that up) - it's not fun and I'm not as strict as I should be about it...(salad with no dressing...really?). Also add in some probiotics and anti-fungals. I'm taking grapefruit seed extract right now, but I do a rotation of other anti-fungals as well to keep my system from resisting. My first symptom when I've strayed too far from the diet is sinus trouble. Then comes the bladder pain, then the fuzzy white coating on my tongue. Then my skin breaks out (itching like crazy) and I get really moody. If I follow the diet and only cheat (i.e. glass of wine once or twice a month), I can keep most symptoms at bay. This may be TMI, but after having a yeast infection that lasted for two years - yes TWO YEARS - I will never go back to eating the way I used to. Low/No carb is a lot easier to do after you've done it for awhile and plan ahead. Plus, you will stop craving it...takes awhile, but I promise, those cravings will stop. I'm not suggesting that you don't have a gluten problem - I'm just letting you know that stopping gluten wasn't enough for me to make my symptoms stop. Hope this helps!

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I, deep in my heart, believe the pain is stemming from the stomach/bowels as I am not regular nor never have been for YEARS!!!! I mentioned this earlier, I never knew constipation could be a sign of celiac. I only know limited amounts of info on gluten - enough to cook for my brother when he is here to avoid cross-contamination. Never would have known the overall effects on other organs, including the bladder. THANK YOU ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :)

Celiac is a head to toe disease because of malabsorption.

Since you are already reading what Karen has posted, read this too-- and see how all your symptoms may be linked:

http://www.cureceliacdisease.org/medical-professionals/guide/symptoms

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Celiac is a head to toe disease because of malabsorption.

Since you are already reading what Karen has posted, read this too-- and see how all your symptoms may be linked:

http://www.cureceliacdisease.org/medical-professionals/guide/symptoms

Very interesting material. I am going to copy these links to my desktop for reference. Interestingly, I checked my bloodwork from last fall (2011) and my white cell count was WAY LOW and I was also very low on potassium. My doc said everything looked okay and since I was in great physical shape, it was nothing to worry about (the WCC and low potassium). At the time, I was eating 2-3 bananas per day and other sources of potassium.

Starting to see some patterns forming here (was in ER for heart palpitations in October 2011, low white cell count since at least 2006, acne since my mid-20's until current, constipation with times of very soft stools, and more). THANK YOU ALL for the information!!!!! :) You have made my day a better one!!!!!

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I recently read that many European countries no longer allow the use of genetically modified wheat. America and Canada have run amuk with it. My doctor said the GMO's are so unkind to the digestive system that gluten sensitivity is drastically on the rise here.

Might explain why you weren't as ill during your travels.

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    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
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