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Interstitial Cystitis

Susan123

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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?

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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?

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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.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

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      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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