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Can You Explain This One?

Pisqualie

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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.)

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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! :)

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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.

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    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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