Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
      130,300
    • Most Online (within 30 mins)
      7,748
    Liss28
    Newest Member
    Liss28
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Finding gluten free ingredients

      By Scott Adams · Posted

      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      beans in dessert recipes

      By Scott Adams · Posted

      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
    • lmemsm
      Ocd making gluten fears unmanageable. Need advice

      By lmemsm · Posted

      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
      Hi Ya All, Dr. just. Told me I have one celiac marker. I have been taking multiple blood test for thin Dr for years. Why couldn’t he have mentioned this! Anyway my functional med practitioner

      By max it · Posted

      I'll get to it. TY
×
×
  • Create New...