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
      132,003
    • Most Online (within 30 mins)
      7,748
    JoEllen Ball
    Newest Member
    JoEllen Ball
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Chances of being coeliac

      By Wheatwacked · Posted

      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Celiac getting dentures

      By captaincrab55 · Posted

      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Aretaeus Cappadocia · Posted

      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      Chances of being coeliac

      By trents · Posted

      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.