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
IrishHeart
Posted

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
CoachAng
Posted

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
CoachAng
Posted

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
ndw3363
Posted

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
CoachAng
Posted

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
kareng
Posted

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

Open Original Shared Link

CoachAng Rookie
CoachAng
Posted

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
IrishHeart
Posted

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
CoachAng
Posted

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
ndw3363
Posted

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
IrishHeart
Posted

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
CoachAng
Posted

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
Ranne10
Posted

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.

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    2. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      What exactly are you taking from doterra?
    4. Xravith
      - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac specialist...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,460
    • Most Online (within 30 mins)
      7,748
    Jujuzinha
    Newest Member
    Jujuzinha
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      What exactly are you taking from doterra? 
    • Xravith
      Challenges eating gluten before biopsy

      By Xravith · Posted

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac  specialist " Dr Fernandez-Becker who down played my ailments and stated im not and then yes I am I even had one her " care team" ask my why do you want that diagnosis. UNMMMMM. I don't want it, its been my life confirmed in 1994.Menopause intensified extra sensitivity and medical has down played my sibo, ibs, CELIAC, now im having skin and eye issues. I thought help was available but its been a complete medical disaster. 
×
×
  • 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.