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

  • 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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    2. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    5. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • 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.