• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Can You Explain This One?
0

Rate this topic

38 posts in this topic

Recommended Posts

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.)

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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!!!!!!!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!!!! :)

Share this post


Link to post
Share on other sites

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.

  • Upvote 1

Share this post


Link to post
Share on other sites

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :)

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

  • Upvote 1

Share this post


Link to post
Share on other sites

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!!!!!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,146
    • Total Posts
      939,918
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Whhyyy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
    • I know for certain gastritis  is one of the main reasons I had the scope. That and my EOE symptoms . If it wasn’t for those I would have never been diagnosed 
  • Upcoming Events