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

Interstitial Cystitis

Susan123

Recommended Posts

Susan123 Rookie
Susan123
Posted

Does anybody have Celiac/Gluten Sensitivity and IC? The reason I ask is because I just got diagnosed with IC and I read that Wheat, Corn, Oat, Barley and Rye can cause additional symptoms in IC Patients. When you look at the causes (unknown to this time) there is a theory that it is caused by antibody levels but they don't say what kind. Any info on this?

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

Celiac.com Sponsor (A8-M):


evie Rookie
evie
Posted
Does anybody have Celiac/Gluten Sensitivity and IC? The reason I ask is because I just got diagnosed with IC and I read that Wheat, Corn, Oat, Barley and Rye can cause additional symptoms in IC Patients. When you look at the causes (unknown to this time) there is a theory that it is caused by antibody levels but they don't say what kind. Any info on this?

:( Susan, I have had that problem for over a year, even before Celiac problem and have found no reason for it. recently had to go on :ph34r: antibiotics :ph34r: for it, just about over it now. Have a theory of inhalant allergies being the cause, my worst times are spring and fall. that theory of our antibodies being the cause sounds likely...no antibodies against it?? good luck to you and drink 10 glasses of water per day...what my dr. said. evie :):)

Does anybody have Celiac/Gluten Sensitivity and IC? The reason I ask is because I just got diagnosed with IC and I read that Wheat, Corn, Oat, Barley and Rye can cause additional symptoms in IC Patients. When you look at the causes (unknown to this time) there is a theory that it is caused by antibody levels but they don't say what kind. Any info on this?

:( Susan, I have had that problem for over a year, even before Celiac problem and have found no reason for it. recently had to go on :ph34r: antibiotics :ph34r: for it, just about over it now. Have a theory of inhalant allergies being the cause, my worst times are spring and fall. that theory of our antibodies being the cause sounds likely...no antibodies against it?? good luck to you and drink 10 glasses of water per day...what my dr. said. evie :):)

Susan123 Rookie
Susan123
Posted
  • Author

Thanks. I took antibiotics for months and then I found out it not a bacterial disease and they never did anything for me. I try to drink only water because they say carbonation irritates the bladder. I am going to a support group this weekend so hopefully I will get more info. Still recovering from a cyto with instillation.

Katie O'Rourke Rookie
Katie O'Rourke
Posted

Sorry to hear you're having such problems - hope you're feeling better soon. The best natural cure for cystitis is actually cranberry juice (blueberry works too, but not as well). It is unique in that it is able to kill off any flagella (tails) on bacteria such as Echerichia coli, which is the most common casue of cystitis, and therefore they cannot hold onto the bladder or GU tract. It's worth a try if antibiotics dont work anyway. :)

Susan123 Rookie
Susan123
Posted
  • Author
Sorry to hear you're having such problems - hope you're feeling better soon. The best natural cure for cystitis is actually cranberry juice (blueberry works too, but not as well). It is unique in that it is able to kill off any flagella (tails) on bacteria such as Echerichia coli, which is the most common casue of cystitis, and therefore they cannot hold onto the bladder or GU tract. It's worth a try if antibiotics dont work anyway. :)

Thanks for the concern and response. Cranberry juice it very painful for people with IC. It is not bacterial it is a bladder wall that is irritated and leaky. You can imagine putting cranberry juice on a cut. Ouch! I found out the hard way. I do eat blueberries as they are recommended.

loraleena Contributor
loraleena
Posted

I do. Diagnosed with IC in 2004 and gluten intolerance in 2005. I also have other autoimmune issues as well.

Susan123 Rookie
Susan123
Posted
  • Author

Interesting. I wonder what the connection if any.... If you don't mind me asking. What kind of treatment are you on for the IC? Any diet tricks?

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

Celiac.com Sponsor (A8-M):


Alicia M Newbie
Alicia M
Posted

I got diagnosed with Celiac in 2004 and have had UTI problems all my life. I just now got told I have IC. I know for sure the two are related. I haven't started the medication for the IC yet. I am just trying to control my diet better to see if that will help.

evie Rookie
evie
Posted
I got diagnosed with Celiac in 2004 and have had UTI problems all my life. I just now got told I have IC. I know for sure the two are related. I haven't started the medication for the IC yet. I am just trying to control my diet better to see if that will help.

what is your medication you are to take for IC? am interested for my next round @ IC, just got over latest one. THX evie

Alicia M Newbie
Alicia M
Posted
what is your medication you are to take for IC? am interested for my next round @ IC, just got over latest one. THX evie

I haven't started taking any medications for it yet. I am trying to see if I can control by diet before I get on any medication. I am still researching it. So what did you take for your first round and I guess it didn't work?

Susan123 Rookie
Susan123
Posted
  • Author

I take L-Argine 1000 and Cranberry (macronium) and was told that the L-Argnine is just as good as the Elmiron and won't make your hair fall out. My hair was breaking off constantly when I was on ELmiron

Alicia M Newbie
Alicia M
Posted
I take L-Argine 1000 and Cranberry (macronium) and was told that the L-Argnine is just as good as the Elmiron and won't make your hair fall out. My hair was breaking off constantly when I was on ELmiron

My doctor wants to put me elmiron.

Susan123 Rookie
Susan123
Posted
  • Author
My doctor wants to put me elmiron.

Elmiron works wonders for many people but for some it makes their hair either fall out or break off. I don't know the percentages but the majority can take it with no problem. I do know it is not an immediate response and can tak months up to a year before you feel anything. I had no relief with it but relief with the argnine in 1 month. I just went to a support group for IC and most of them take argnine too. One advantage is you can get it at GNC whereas Elmiron costs about a 100.00 dollars with no generic available. Your plan might cover it more not sure. My hair didn't necessary fall out I just got major breakage on top of my head so it looked like I had a halo. It repairs itself when you stop the drug. I guess what I am saying is give it a chance if you are one of the people it works for it will be well worth it.

  • 1 month later...
danikali Enthusiast
danikali
Posted

Okay, I just got officially diagnosed yesterday with IC. I've known that I had it forever, 8 years now and it kept getting worse. So I figured I should at least get the diagnosis and try some treatment. I just started elmiron last night and I REALLY REALLY REALLY REALLY hope that it helps. But the day before I got diagnosed, I also learned about a special diet for IC called the alkine acid diet. Foods are split up into two groups. A) alkaline foods-most fruits and veggies B) Meats, proteins (most), starches and sugars. ON the diet, you are allowed 80% from the alkaline food grou and 20% from the acid food group. It is supposed to balance out the acid in your body and heal your bladder. Of course, you should always eat like that even after you are healed because if you are a person who's system creates a lot of acid, then you will likley get a 'sick' bladder again. It goes more into depth but I know I would explain it wrong. I also bought a book and I'm waiting for it.....I'm going to try this diet and also take the elmiron. If the elmiron gives me any side effects, I may get rid of it and just try with the diet. Has anyone ever heard of this diet?

whitball Explorer
whitball
Posted

I was diagnosed with IC in 2003. I'm still having an aweful time with it. I take elavil at bedtime for pain and take darvocet when I have really bad days. I do know that part of the problem is that I drink diet pepsi/caffiene free, when I get really hungry amd don't want my stomach to growl during meetings. I am always hungry on the celiac diet. It's kind of hard to eat during meetings and I try to eat a snack prior to the meeting. If my stomach isn't growling, I have to pee. Never fails.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,539
    • Most Online (within 30 mins)
      7,748
    Josiemc
    Newest Member
    Josiemc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • 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.