Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can You Explain This One?


Pisqualie

Recommended Posts

IrishHeart Veteran

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.)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CoachAng Rookie

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.

CoachAng Rookie

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!!!!!!!

ndw3363 Contributor

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!

CoachAng Rookie

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!!!! :)

kareng Grand Master

I know you said you did your research, but in case you missed this

Open Original Shared Link

CoachAng Rookie

I know you said you did your research, but in case you missed this

Open Original Shared Link

Thank you for the link. Going to review it now! I appreciate any help/info provided! :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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.

CoachAng Rookie

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

ndw3363 Contributor

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!

IrishHeart Veteran

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:

Open Original Shared Link

CoachAng Rookie

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:

Open Original Shared Link

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!!!!!

Ranne10 Rookie

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    2. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    3. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    5. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,594
    • Most Online (within 30 mins)
      7,748

    Deedeewhiteside
    Newest Member
    Deedeewhiteside
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.