Interstitial Cystitis, Protocols

The Interstitial Cystitis Diet

The Interstitial Cystitis Diet

Interstitial cystitis is a functional disorder and as such may have different causes. But most chronic orders are linked to diet and lifestyle to some degree.

Our bodies need the right building blocks to carry out repair and maintenance functions. These building blocks are nutrients, found in natural foods.




I generally recommend a primal/ancestral diet (as outlined in the recommendations for cystitis) to anyone who wants to optimize their health. People with interstitial cystitis can try this approach and see if it improves their symptoms.

If these protocols are too restrictive for you and you only want to manage symptoms with diet, you can follow a standard Interstitial Cystitis diet and avoid the main trigger foods.

However, because of the nature of this disorder and a possible link to autoimmunity, a stricter approach may be needed. The high amount of inflammation present calls for a high amount of healing.

Luckily, there are already some successful strategies out there. The two protocols I can recommend for interstitial cystitis are the GAPS diet or the Autoimmune Paleo (AIP) protocol. Both protocols are designed to be extremely nutrient-dense, whilst being very soothing for the mucosal tissues of the body .

I personally healed from interstitial cystitis on the GAPS diet but found that this protocol has some limitations. I therefore recommend the AIP protocol, which is backed by extensive research.

How can AIP help Interstitial Cystitis?

  • Supporting the health of the mucosal lining of both the bladder and the gut are of prime importance. Bone broth is one of the best foods to support the GAG layer of both the bladder and the intestines and is one of the main things that helped me recover from interstitial cystitis.
  • We need to correct nutrient imbalances in the body to support optimal healing and remove any toxins and allergens from the diet that could cause further inflammation in the bladder.
  • Supporting the immune system and a strong gut and genital microbiota are also important.

The AIP protocol is very restrictive but don’t worry – it typically only needs to be followed until the symptoms have disappeared.

We’re all individuals and not one thing will work for everybody. Customizations need to be made on an individual basis and there has to be some trial and error. You may be completely fine on some of the foods restricted on AIP but your symptoms may flare up when certain other food groups are consumed. This page contains an extensive list of all possible trigger foods. You don’t need to restrict them all – just pay attention to your body and see if you react to any of them.

Before you make any changes to your diet make sure you also read my post on how to customize your interstitial cystitis diet.

AIP Protocol

For thorough explanations about the how and why of the AIP protocol please visit thepaleomom.com.

Main Foods

  • Grass-fed meat, organ meats and offal, game, wild-caught fish and shellfish, free-range pork and poultry (in moderation)
  • Most kinds of vegetables – eat the rainbow
  • Sea vegetables (excluding chlorella and spirulina as they stimulate the immune system)
  • Quality fats from avocado, olive oil, coconut oil, palm oil, grass-fed animal fat, oily-fish
  • Low fructose fruit in moderation
  • Probiotic foods – such as sauerkraut, kimchi, kombucha, coconut or water kefir, coconut yoghurt
  • Bone broth
  • Sea salt
  • Fresh herbs
  • Filtered water

Consume in moderation:

  • Coconut products
  • Carob
  • DG licorice
  • Rooibos tea, green tea, black tea
  • All vinegars
  • Coconut water
  • Cooked vanilla extract

Consume very occasionally:

  • Natural sweeteners: Maple syrup, honey, date sugar, coconut sugar
  • Dried fruits

Foods to avoid

  • Grains, especially gluten (including corn)
  • Legumes (including peanuts)
  • Dairy
  • Refined sugar
  • Vegetable oils and margarine (hydrogenated oils)
  • Processed foods and food chemicals
  • Eggs (mainly the whites)
  • Nuts/seeds
  • Nightshades (potatoes, tomatoes, eggplants, sweet and hot peppers, cayenne, red pepper, tomatillos, goji berries, spices derived from peppers, ashwaghanda)
  • Gluten cross-reactive foods (all the forbidden foods plus chocolate, coffee and yeast)
  • Fructose: keep under 20 grams/day
  • Alcohol
  • Non-nutritive sweeteners (e.g. stevia, xylitol, sorbitol, mannitol, aspartame etc)
  • Food additives (including emulsifiers and thickeners)
  • NSAIDs (aspirin etc)

Get used to reading ingredient labels. Don’t buy anything with ingredients you don’t recognize – they are probably not good for you!

Other Potential Trigger Foods

Oxalates

Apart from the foods already restricted, some people may experience a worsening of their symptoms when they consume foods high in oxalates. I experienced this and although it has gotten less severe, I sometimes still suffer from slight bladder discomfort when consuming a lot of high-oxalate foods. Oxalates are molecules found in plants that protect the plants. They can combine with minerals in the gut, carrying them out of the body and can also form sharp compounds that can be extremely irritating to certain susceptible people.

If your symptoms worsen after consuming any of the following foods you may benefit from a low-oxalate diet. You may need to avoid high-oxalate foods and limit moderate-oxalate foods until symptoms improve.

High Oxalate

  • blackberries
  • blueberries
  • red currants
  • dewberries
  • figs, dried
  • grapes, purple
  • gooseberries
  • kiwi
  • lemon/lime/orange peel
  • raspberries
  • rhubarb
  • strawberries
  • tangerines
  • beans (green, wax, dried)
  • beets (tops, roots, greens)
  • celery
  • chives
  • spring greens
  • dandelion
  • aubergine
  • kale
  • leeks
  • mustard greens
  • okra
  • parsley
  • parsnips
  • peppers, green
  • swede
  • sorrel
  • spinach
  • summer squash
  • sweet potatoes
  • Swiss chard
  • watercress
  • yams
  • cinnamon, ground
  • pepper, more than 1 tsp/day
  • ginger
  • cocoa, chocolate
  • tea
  • almonds
  • cashews
  • green beans, waxed and dried
  • peanuts
  • pecans
  • sesame seeds
  • sunflower seeds
  • walnuts

Moderate Oxalate

  • Asparagus
  • Artichokes
  • brussels sprouts
  • broccoli
  • carrots
  • cucumbers
  • kohlrabi
  • lettuce
  • mushrooms
  • onions
  • potatoes, white
  • peas
  • tomato
  • basil
  • apples with skin
  • apricots
  • black currants
  • cranberries, dried
  • grapefruit
  • oranges
  • peaches
  • pears
  • pineapple
  • plums
  • prunes
  • beef kidney
  • liver
  • coffee
  • cranberry juice

Mould-contaminated foods

Mould poisoning is a very real and overlooked problem. A lot of buildings are water damaged and have mould growing in walls etc. Mould can also be present in the environment and in foods. Some foods are more contaminated than others due to their origin (i.e. if they’re from a tropical country) and storage methods. My health problems started when I lived in a mouldy room and I still experience a flare of symptoms when eating contaminated foods. If you feel that you may be affected by mould try to eliminate the following foods from your diet (most of them are not recommended on AIP anyways):

  • Powdered spices, especially black pepper (although it may be negligible in the small amounts used)
  • Some coffees, cacao/chocolate
  • Pistachios, Brazil nuts, pecans, walnuts, cashews
  • Peanuts
  • Maca powder
  • Dried fruits
  • Tomato products
  • Over-ripe vegetables and fruit
  • Aged cheese
  • Wine and vinegar (Apple-cider vinegar is okay)
  • B-complex –vitamins
  • Digestive enzymes (use pancreatic enzymes instead)
  • Mushrooms
  • Smoked meats – ham, bacon
  • Packaged fruit juices

Salicylates

Salicylates are chemicals in plants that protect the plant from being eaten by insects or being attacked by microbes. They are toxic in high doses but normally consumption of plants does not pose a problem. However, Salicylates are used in many commercial products and drugs like aspirin. Some people are highly sensitive to it and may be reacting to processed foods, hygiene articles, cosmetics and aspirin. If you find you’re one of them, high-salicylate foods may or may not be a problem.

High-salicylate foods

  • Canned Green Olives
  • Champignon
  • Chicory
  • Chili
  • Courgette
  • Endive
  • Peppers
  • Radish
  • Tomato
  • All dried Fruits
  • Apricot
  • Avocado
  • Blackberry
  • Blackcurrant
  • Blueberry
  • Cherries
  • Cranberry
  • Currant
  • Date
  • Grape
  • Orange
  • Pineapple
  • Plum
  • Prune
  • Raisin
  • Raspberry
  • Redcurrant
  • Strawberry
  • Tangerine
  • Almond, Peanuts with skins on, Water chestnut
  • Coconut Oil, Olive Oil
  • Cider Vinegar
  • Honey
  • Liquorice
  • White Vinegar, Wine Vinegar
  • Cayenne, Celery powder, Cumin, Curry, Dill, Fenugreek, Garam masala, Ginger, Mace, Mint, Mustard, Nutmeg, Oregano, Paprika, Peppermint, Rosemary, Sage, Tarragon, Thyme, Turmeric, White pepper, Black pepper

Acidic Foods

Acidic foods may intensify the burning feeling patients with interstitial cystitis experience. They can be irritating to already inflamed tissues. Therefore, you may want to limit acidic foods until the inflammation has improved. Fermented foods should be fine in small quantities. Acidic foods are:

  • Sour fruits, especially citrus
  • Tomatoes
  • Carbonated drinks
  • Vinegar
  • Raw onions
  • Ascorbic acid (vitamin C) – can be buffered with calcium carbonate
  • Spicy foods
  • Coffee, tea
  • Cranberries
  • Rhubarb

Amino Acids: Tyrosine, Tryptophan, Tyramine, Phenylalanine

The four amino acids tyrosine, tryptophan, tyramine, phenylalanine can be triggers for interstitial cystitis patients because of their action on certain neurotransmitters that are not metabolised properly by some of these patients. A strong indicator would be foul smelling urine.

Foods high in Tyrosine, Tryptophan, Tyramine, Phenylalanine

  • Anchovies
  • Avocado
  • Bananas
  • Brewer’s yeast
  • Caviar
  • Cheeses
  • Chicken liver
  • Chocolate
  • Cranberries
  • Some legumes
  • Mayonnaise
  • Aspartame
  • Nuts
  • Onions
  • Papaya
  • Pineapple
  • Pork
  • Prunes
  • Raisins
  • Sour cream
  • Yoghurt
  • Soy sauce
  • Wine

Histamine

Histamine is an inflammatory compound usually secreted from mast cells in response to an antigen. Mast cells have been found to be increased in the bladder of IC patients. High levels of histamine increase inflammation and ‘leakiness’ of mucosal tissue. Histamine can also be found in certain foods. Increasing histamine in the bladder by consuming foods high in histamine could potentially exacerbate symptoms.

Foods high in histamine

  • Aged foods: cheese, cured meats, fermented foods, vinegar
  • Leftovers
  • Over-ripe fruit and vegetables
  • Potato
  • Avocado
  • Broad Beans
  • Green Beans
  • Eggplant (Aubergine)
  • Pumpkin
  • Spinach
  • Sweet Potato
  • Tomato
  • Packaged salad mixes
  • Packaged peeled vegetables
  • Berries
  • Stone fruits
  • Citrus
  • Bananas
  • Dates
  • Grapes
  • Papaya
  • Pineapple
  • Raisins
  • Cocoa
  • Canned fish
  • Shellfish, roe
  • Walnuts
  • Pecans
  • Anise
  • Cinnamon
  • Cloves
  • Curry Powder
  •  Hot Paprika (Cayenne)
  • Nutmeg
  • Unpasteurized honey
  • Teas
  • Alcohol
  • Yeast

 

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14 Comments

  • Reply

    Moriah

    July 26, 2017

    Hi Layla! I’m doing AIP, on week 4. It’s hard but I have seen some reduction in symptoms. How long do you suggest people stay on this diet? Or in your experience, how long does it usually take for symptoms to resolve? I know everyone is different. 8 weeks? 6 months? Thank you!

    • Reply

      Layla

      July 26, 2017

      Hi Moriah,
      I think Dr Ballantyne suggests slowly re-intoducing foods again after 3 months. If you’re generally starting to feel better but symptoms have not fully resolved after that time I would keep going. But don’t be afraid to re-introduce once you feel better. Also, if you improve at first and then start feeling worse you might have to re-introduce foods and watch calorie intake. For me it took 6 months (but I was on the GAPS diet), however the extreme carb restriction wasn’t good for me long-term but this shouldn’t be a big issue on AIP as it allows more roots.

  • Reply

    Moriah

    July 28, 2017

    Ok, thanks! What was it like as you were healing? What did you notice? I feel like I have days where my symptoms sort of recede, but then another day they feel back. I start to question this whole process!

    • Reply

      Layla

      July 29, 2017

      Well I think I had what they call a ‘healing crisis’ – some symptoms got worse before they got better and some new symptoms appeared, then disappeared. For example I lost my period for 6 months, lost a lot of weight, had a weird skin rash that I’d never had before, a weird cough that lasted for weeks. All of it disappeared after a while and then after 6 months I got my period back, started gaining weight and the bladder pain disappeared. Not everything improved though and certain things seemed to get a bit worse due to some shortcomings of the GAPS diet and being obsessively restrictive. It’s hard to tell sometimes whether it’s a healing reaction or getting worse. Generally these reactions shouldn’t last too long, and you should see a general improvement. Don’t think you need to try harder or restrict more if things aren’t getting better, sometimes it means you need to add more things and do whatever causes you the least stress – this is one mistake I made. Stress management is so important, if the diet is too stressful I’d recommend to just do as much as you can without it stressing you out.

  • Reply

    D.

    December 4, 2017

    Hi Layla,

    Thanks so much for your blog. I’m currently starting month 3 of a very low carb diet, similar to AIP except I seem to tolerate fermented milk products, nuts, seeds and eggs, and so I haven’t stopped those. (Maybe I should anyway just in case, but I’m already so limited….) I also haven’t been eating any higher-carb root veggies — root veggies seem to give me bladder flareups. Sweet potato and parsnip puree the other day triggered my bladder symptoms. I have mainly bladder symptoms, but also intestinal ones. A test found candida in my stool, and all urine tests are negative. I’ve seen a lot of improvement over these 2 months, but the problem is that I’m feeling very weak and am losing weight on this diet (I’m already underweight), and have probably been in ketosis… not good! But reintroducing carbs isn’t easy, with my symptoms. Do you have any advice? It seems like you’ve been through a similar situation. I relate to what you say about stress… hard to lower the stress level on this austere diet, which seems to stress my body. I’m doing everything I can but eating has never been so complicated, and I’m not sure I’m doing the right thing. I read your post about natural antifungals/antibiotics. Which ones did you take? Do you recommend oregano oil or grapefruit seed extract? I’ve also read that marshmallow root tea helps. Any thoughts on how I can go forward? It seems like just diet is not going to heal me, on its own, but I’ll also need some kind of herbal remedies. (I’m also on probiotics but am unsure if they’re helping at all). Thanks so much!!
    D.

    • Reply

      Layla

      December 4, 2017

      Hi Danielle, Sorry to hear your struggling, totally feel your pain. I also used to tolerate no carbs and ran into problems on the low carb diet long-term. The problem is that this kind of diet is probably too low in calories and also potassium. You must find something to replace the calories with, or a carbohydrate you can tolerate. I managed to re-introduce more carbs after I had worked on my gut health more using prebiotic fibres (I also didn’t see massive results with probotics). I’d look into iron overload (a problem often with candida) and balancing minerals and vitamins (especially Vitamin C). I also struggled with natural antimicrobials, Lauricidin (or Monolaurin) seems to be the safest, I didn’t have good results with oregano oil or grapefruit seed. Uva Ursi definitely shouldn’t be used long-term so good idea to stop it.
      It was a long process for me and I can’t pinpoint exactly what did it. It’s hard to say what to do without working closer with you.

      • Reply

        Danielle

        December 5, 2017

        Hi Layla,

        Thank you so much for your answer and for being there! What prebiotic fibres did you use, when working on your gut health? My reactions to carbs are much more severe in the bladder than the gut. I realize that maybe just simply time is necessary to heal, but I want to make sure to be doing the right things during that time. And I agree, after these 2 months on very low carb, I’ve got to make some changes and get more calories and carbs into my diet since this just isn’t sustainable. Did you try low-glucose grains like quinoa? Maybe they’re easier to tolerate than higher-glucose root veggies. (?) I’ll look into iron overload, though when this began I was anemic and don’t know if that has changed.
        Again, thanks so much!!!

        • Reply

          Layla

          December 5, 2017

          No problem – that’s why I started this Blog!
          I use(d) glucomannan, pectin, psyllium, Bimuno, arabinogalactan, inulin, FOS – you need to find one that works for you and start really slowly, I totally overdid it at some point and got crazy bloated.
          I developed a severe intolerance to Quinoa when I was raw vegan, so staying clear of that. Generally don’t do well on any grains, but doesn’t mean it’s the same for you (they’re just not as rich in nutrients as other things). How do you do on fruits? Some people who don’t tolerate starches may be okay on fruits. Maybe even beans/legumes?
          With iron there can be sometimes a problem that it’s in the wrong places, which is a problem with low Vitamin C, as it helps to put iron in the right places (iron in the gut/bladder can feed pathogens you see). I’ve recently seen some benefits from really upping my Vitamin C. It may also be a good idea to have your bladder tested, which country do you live in?

          • Danielle

            December 6, 2017

            Thanks, this is so helpful… I’ll try out the prebiotics, and go slowly! I used to do quinoa without a problem (I’ve been off gluten for years) so I think I’ll give it a try. It seems to be the lowest glycemic index grain, better than rice which I think I need to stay away from for now. I stopped all fruits when I went on the low-carb candida diet and am a bit afraid to reintroduce them, but maybe I could try blueberries. I seem to be most sensitive to sugars and I think fructose could cause an explosion down there. I’ve been doing so much better since I went off carbs and sugars, but now I realize I need some glucose/carbs. I don’t do well digesting beans/legumes in general and think I should avoid them. I’ll also start taking more vitamin C! I live in France, and there’s a good health care system here, but if possible I’d rather stay away from invasive testing, I’ve read that it can irritate things a lot and not necessarily give useful info. If I can’t cure this naturally, I’ll have to get it tested. A urologist I saw in the summer threw drugs at me and told me that if they didn’t work, we’ll do the test, but I didn’t take them. I’ve been reading about the glycemic index and am going to start experimenting with low glycemic carbs, both grains and veggies… quinoa, maybe amaranth (not much info on that), buckwheat, yams and carrots. I think the autoimmune paleo diet is great but not necessarily exactly what I need just now, since I seem to be oversensitive to sugars and can’t do all the veggies it recommends, but I do need carbs. Again thanks! D.

  • Reply

    D.

    December 4, 2017

    PS I’ve taken uva ursi for the past month and it hasn’t seemed to have helped, but maybe it’s too soon to tell. I’ll have to stop it now, a month is long enough. D.

  • Reply

    Danielle

    December 10, 2017

    Update: I’ve had a little quinoa over the past week or so, without triggering any bladder symptoms… I’m delighted. So I’ve found a diet I can stay on until I heal, it seems. I also read that sweet potato and especially parsnips are high on the glycemic index, so it’s not so surprising I reacted to them… I’m going to try lower GI root veggies soon.
    Good luck to everyone.

    • Reply

      Layla

      December 10, 2017

      I’m glad you’ve found something! Yes, most root veggies are quite high GI because of their sugar or starch content.

  • Reply

    Anna

    December 15, 2017

    I’m new to IC and also have a celiacs (2014 diagnosis). I just found a functional doc. who is amazing. She put me on L-glutamine which has helped me a ton with my inflammation. I’m still dealing with GI issues but I think that I’m healing (just started this last week). She wants me try fermented foods. Probiotics have been tough for me to tolerate (I think it’s b/c of the gut dysbiosis). I took a small sip of kombucha last night and it did not go so well with my bladder. Do you have any tips on slowly integrating that food back in? How were you able to tolerate it?
    I’m also AIP.

    • Reply

      Layla

      December 15, 2017

      Hi Anna, glad to hear you’re working with someone who can help you. With fermented foods and bladder issues it tends to be a problem with histamine (as these bacteria produce histamine during fermentation). I would look into strains that do not produce histamine, e.g. D-lactate free bacteria or soil based strains, maybe ask you doc about this. You can also read my posts on mast cells for more about the histamine issue.
      I was just able to tolerate these strains but for you it sounds like you might have to avoid them for a while or start really slowly.

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