What Could it be? Can anyone help? Feeling alone and helpless.

[Chocolatepudding]

I have been dealing with urethral pain and bladder pressure for the past month and I have taken many tests and they have all come back clear. I’ve had blood tests, urine samples tested, CT scan and an ultrasound. At the moment the only thing that seems to help us Naproxen. I still feel pressure and without anti inflammatories I can’t actually get through the day. I’ve been off work because of the pain and have been housebound for a very long time. I’ve also developed a new type of pain in my lower back yesterday. It feels like sciatica (I’ve never had it before but the symptoms fit) the GP doesn’t actually know what to do and neither do I. All I want is some answers. Can anyone suggest an approach I could take? Can I request anything from the GP?

[bantam12]

Assuming you are female, have you been checked for Prolapse? Interstitial cystitis? Atrophy ? Been referred to a specialist ?

[Chocolatepudding in reply to bantam12]

Thank you for a reply. I am a 26 year old female. According to my CT and ultrasound all of my organs are ‘structurally ok’ so I’ve been told. I haven’t been referred to a specialist which is what I have been asking for. My GP said that she needs to rule out all other possibilities first before she refers me. I have an appointment today to discuss next steps.

[bantam12 in reply to Chocolatepudding]

You need a Urologist who deals with female problems, most are only experienced in male issues ! Or a Urogynaecologist who in my experience are the better option.

It can be a long slog to find the answer especially if all tests come back negative, I have finally found the right Dr after about 20 years of being dismissed 😞

[Chocolatepudding in reply to bantam12]

Im being referred to see a urologist. My GP said that the pain in my leg and my bladder issues seem to be connected. At this point it’s still under investigation.

[Saassii in reply to Chocolatepudding]

Use D-mannose to see if you can get any help by ridding the bladder of any unwanted bacteria.

For me high histamine foods, very especially fruits trigger pain down there like that, along with burning and symptoms like UTI. LOOK AT DIETARY TRIGGERS, if someone had suggested something like that to me and I'd tried it, life would have been a lot less painful.

Are you hypermobile perchance?

[Chocolatepudding in reply to Saassii]

Thank you for your reply. I’ll order some today I think at this point I’m willing to try anything to help with the pain. I’ve been tracking what I eat and I have really limited fruit because I have heard that fruit can make things worse.

It’s interesting that you ask, I'm hyper-mobile in my knees and hands.

[Saassii in reply to Chocolatepudding]

Dang maybe you've got Ehlers Danlos Syndrome or hypermobility spectrum disorder. You're describing interstitial cystitis, it is very commonly associated with EDS. If this is the case you'll find high histamine fruits especially and also high histamine vegetables/nightshades will cause mast cell activation. The bladder is lined with mast cells and is particularly reactive. For me one small serve of blueberries is extremely painful with UTI symptoms.

[Chocolatepudding in reply to Saassii]

Oh, i’ll do some research into that! Thank you again. I’ve been keeping track of my diet and I’m hoping to find the triggers. I’m wishing you well it sounds like you’re living with this condition and sounds like it’s very difficult to manage. Which fruits and veg do you particularly avoid?

[Saassii in reply to Chocolatepudding]

Thanks for your kindness. It is nightmarish I completely agree with you, there is solace and relief thankfully found in knowledge. My list includes several things that are not high histamine but definitely act as triggers (since I was exposed to mold, bacteria, inflamagens etc in a water damage). But it will be useful for you to compare my experience with this Professor's list and then you'll have more ideas for yourself who will be slightly different again.

Things I can eat. They are in order of volume required to maintain health and weight range (suddenly I can eat much more without weight gain when eating low histamine, what a bonus):

I eat primarily vegetables, every deficit needs to be replaced with additional vegetables. Turnips, Swedes, parsnips, cabbage, garlic, onions, celery, carrot, leek, ginger(rhizome).

Any agreeable herbs but I must buy fresh grown, wash and dry then use as I react to store bought with visual oral reactions.

All sprouts, these are particularly helpful, especially pea sprouts with contain DAO, the enzyme required to break down histamine.

Fruits. Mango, dragon fruit, papaya, melons (watermelon etc), lychee.

Young coconuts.

Fish, chicken, beef, lamb.

Things I CANNOT eat;

All high histamine vegetables and nightshades, white potatoes are nightshades, so spinach etc. I do tolerate a little fresh tomato although it's a high histamine fruit, i do not tolerate tomato sauces or pastes.

No high histamine fruits. I can't eat apples or pears either even though they are not high histamine. Fruits are my most difficult eating item. Max 2 large pieces/3 smaller each day..

No nuts or seeds to speak of, a tiny serve in a meal I'd pick out to avoid microbes since I'm so ultra sensitive to all things fungus, mold, food spoilage now.

No mold or fungus of any kind. No mushrooms, no cheese, no ferments (they're all terribly high histamine and give hives and bladder burn etc)

NO GRAIN. Grain is very high in mycotoxins, chemicals, antifungals etc. They are also extremely low in nutrients and rapidly converted to sugar. Stitch all of them out including corn and add in vegetables, you'll be blessed to be able to eat 4 times the volume vegetables to grain.

I don't tolerate dairy, milk gives me painful thrush.

No refined sugar, no processed foods, avoid all chemicals and additives. I react to supplements and excipients in pharmaceuticals.

No alcohol, but especially no wine or beer as they're too high in yeasts which are incredibly problematic. If you want to have alcohol your best option is a gluten free vodka, use a squeeze of fresh lemon (it is citrus however I tolerate a little but always fare worse) with mineral water. You'll have reduced many problems with that choice. I blissfully found "hangovers" were related to the alcohol type for me rather than volume.

I can't do any tea, coffee, decaf, none of it. I drink ginger slices steeped in water or a little hibiscus tea, but mainly hot water. Water is my primary drink and I really must drink a lot to avoid symptoms like low blood pressure, dizzy, feel faint shakey type things.

Celtic sea salt or Himalayan sea salt is a must a main meal times to replace lost electrolytes and minerals.

[Saassii in reply to Chocolatepudding]

In general, the low mold diet looks like this:

Avoid –

•Eliminate sugar in all forms.

•Avoid processed foods – canned, boxed, bottled etc.

•Avoid mold and yeast containing foods – cheese, alcohol, condiments, fungi, cured and smoked meats, dried fruits.

•Avoid gluten and grains.

•Choose a mold-free coffee.

Enjoy –

•Organic, pasture raised animal products.

•Low carbohydrate vegetables – broccoli, cauliflower, chard, cabbage, arugula, peppers, tomato (fresh only), cucumber, onion, kale, asparagus, spinach, leeks, garlic, artichokes, etc.

•Raw nuts and seeds – sunflower seeds, pumpkin seeds, flax seeds, chia seeds, almonds, and other low mold nuts (No peanuts, cashews, walnuts, pecans,brazil nuts).

•Healthy Fats – extra virgin olive oil, coconut milk, coconut oil, ghee, avocado, organic butter.

[Saassii in reply to Chocolatepudding]

Provided with permission of author, Dr. Joneja, by MASTOCYTOSIS SOCIETY CANADA (Updated Nov.2012) The Histamine & Tyramine Restricted Diet & Food Guidelines for Mast Cell Disorders

The HISTAMINE and TYRAMINE Restricted Diet

by Janice Vickerstaff Joneja, PhD., R.D.

Please buy the book, Dealing with Food Allergies by Dr. Janice Joneja, as it is important for reference and understanding the impact of food on mastocytosis, general health and nutrition etc. The book is packed with info on all kinds of food allergies and has several other diets for Soy, Yeast, Nuts, Fish, Sulfites, Colours/Tartrazine, Salicylates, Nickle Allergy, etc. This entire book speaks to the wide range of sensitivities we each may experience, plus explains the immunology & allergy biology in layman’s terms. It’s an excellent educational resource for us all.

Author notes that "4 weeks on this diet should be sufficient for a person to determine whether this will provide relief" of symptoms.

November, 2012:- MSC has included minor additions to adjust this diet to include our patient success tips and warnings.

(Note: Many patients find that they are able to have some items on the restricted list; while some items on the allowed list are not safe for them. We suggest you use this diet as a general guideline to start eating healthy while limiting mast cell degranulation. We are often individually variable in food & drink triggers.)

TYPE OF FOOD FOODS ALLOWED

FOODS RESTRICTED

MILK AND MILK PRODUCTS

•Plain pasteurized milk from any animal (most of us do best with Skim or Lactose Free Milk, Coconut Milk, or Goat Milk)

• Milk products made without microbial cultures such as: -

- Panir

- Mascarpone* - Ricotta*

*Read the labels carefully to ensure no microbial cultures are included

• Ice cream free from any restricted

ingredient • Cream

• Fermented milk products from any animal, such as: -

- Cheese of all types

- Cottage cheese

- Processed cheeses

- Cream cheese

- Sour cream

- Buttermilk

- Yogurt

- Kefir

• And any other fermented milk products • Foods made with milk products other

than those allowed

GRAINS, CEREALS, BREADS, & OTHER BAKED PRODUCTS

• Any pure, unbleached flour or grain

• Baking-powder-leavened products such

as

- Biscuits

- Quick breads

- Soda bread

- Scones

- Muffins

• Homemade or purchased baked goods made with allowed ingredients

• Crackers without yeast, such as TriscuitsTM

• Breakfast cereals with allowed ingredients including any grain without artificial colours or preservatives

• Yeast-risen breads and baked products such as: -

- Bread

- Pizza Dough

- Buns

- Pita Bread

- Croissants

- English Muffins

- Crumpets

- Crackers With Yeast (Read Labels)

Such As Ritz, Saltines

• Products made with Restricted

Ingredients, such as:-

- Anise

- Artificial Flavours and/or Colours

- Bleached Flour

- Cheese

- Chocolate

- Cinnamon

[Saassii in reply to Saassii]

Provided with permission of author, Dr. Joneja, by MASTOCYTOSIS SOCIETY CANADA (Updated Nov.2012) The Histamine & Tyramine Restricted Diet & Food Guidelines for Mast Cell Disorders

TYPE OF FOOD FOODS ALLOWED

FOODS RESTRICTED

GRAINS, CEREALS, BREADS, & OTHER BAKED PRODUCTS continued...

- Cloves

- Cocoa

- Margarine

- Preservatives

- Restricted Fruit Including Jams And

Jellies Made With These Fruits

• Baking Mixes

• Dry Dessert Mixes

• Any Food made with or cooked in Oils

With hydrolyzed lecithin, BHA, BHT

• Breakfast Cereals containing Restricted

Ingredients

VEGETABLES

• All pure, fresh, or frozen vegetables and their juices except those in the “restricted” columns

• Potato

• Avocado

• Broad Beans

• Green Beans

• Eggplant (Aubergine)

• Pumpkin

• Sauerkraut

• Spinach

• Sweet Potato

• Tomato

• Over-ripe vegetables

•Pickled vegetables

•Packaged salad mixes

•Packaged peeled vegetables

• Most commercial salad dressings with

vinegar, artificial colour, flavour, or preservatives

FRUIT

• All pure, fresh, or frozen fruit and their juices except those in the "restricted" column

• Allowed fruits include: -

- Melons such as cantaloupe (rock

melon), honeydew, watermelon • Other fruits such as: -

- Apple

- Pear

- Fig

- Kiwi

- Mango

- Passion fruit

- Rhubarb

- Starfruit

- Longans

- Lychees

• Fruit dishes made with allowed ingredients

• Lemon AND/OR Lime

• The following fresh, frozen, and canned

fruits and their juices:-

- Berries such as cranberries,

blueberries, blackberries, gooseberries, loganberries, raspberries and strawberries

- Stone fruits such as apricots, cherries, nectarines, peaches, plums, prunes

- Citrus fruits such as oranges and grapefruits

- Other fruits such as bananas, grapes, currants, dates, papayas (pawpaws), pineapples, raisins

• Fruit dishes, jams, or juices made with restricted ingredients

• Any over-ripe fruit

[Saassii in reply to Saassii]

Provided with permission of author, Dr. Joneja, by MASTOCYTOSIS SOCIETY CANADA (Updated Nov.2012) The Histamine & Tyramine Restricted Diet & Food Guidelines for Mast Cell Disorders

TYPE OF FOOD FOODS ALLOWED

FOODS RESTRICTED

MEAT, POULTRY, AND FISH

• Pure, freshly cooked meat or poultry except those in the "restricted" column

• Any freshly caught, gutted, and cooked fish EXCEPT those in “restricted”

• If raw meat is not cooked immediately, store it in the freezer

• Cooked meat uneaten should be immediately frozen. Histamine rises while cooked foods are resting or refrigerated. Freezing halts histamine rising in cooked foods.

• ALL Shellfish, roe, and caviar

• Any fish that has not been gutted and

cooked immediately after being caught

• Commercially canned fish

• All processed meats such as:-

- Pepperoni

- Salami

- Bologna

- Weiners (hot dog)

• All pickled meats, eggs, fish

LEGUMES

• All plain legumes (except those in the "restricted" list) such as: –

- Lima beans

• Dried beans and peas, such as: -

- Chickpeas (Garbanzo Beans)

- Pinto Beans

- White Beans

- Navy Beans

- Black-Eyed Peas

- Black Beans

- Lentils (Red, Yellow, Brown)

- Split Peas

- Peanuts

- Pure Peanut Butter

• Green peas

• Sugar or Sweet peas

• Red beans

• Soybeans

• Tofu

• Fermented soy products such as -

- Soy Sauce

- Fermented Bean Curd

- Soybean Paste

- Shrimp Paste

- Chili Soybean Paste

- Miso

NUTS AND SEEDS

• All plain nuts and seeds and their flours and butters EXCEPT those in the “restricted” column

• Walnuts • Pecans

FATS AND OILS

• All cold-pressed oils, such as:-

- Extra Virgin Olive Oil

- Coconut oil

- Flaxseed oil

- Sunflower oil

- Jojoba oil

• Processed oils containing preservatives such as BHA and BHT

SPICES AND HERBS

• All fresh, frozen, or dried herbs and spices EXCEPT those in the “restricted” column

• Anise

• Cinnamon

• Cloves

• Curry Powder

• Hot Paprika (Cayenne)

• Nutmeg

• Seasoning Packets With Restricted

Ingredients

• Commercial Packaged Foods Labeled

With "Spices" Or "Flavoring"

[Saassii in reply to Saassii]

Provided with permission of author, Dr. Joneja, by MASTOCYTOSIS SOCIETY CANADA (Updated Nov.2012) The Histamine & Tyramine Restricted Diet & Food Guidelines for Mast Cell Disorders

TYPE OF FOOD FOODS ALLOWED FOODS RESTRICTED

SWEETS AND SWEETENERS

• Pasteurized Honey, Sugar

• Icing Sugar

• Maple Syrup

• Corn Syrup

• Pure Jams, Jellies, Marmalade, And Conserves Made With Allowed Ingredients

• Plain, Artificial Sweeteners

• Homemade Sweets With Allowed

Ingredients

• Unpasteurized Honey • Chocolate

• Cocoa Beans

• Cocoa

• Flavoured Syrups

• Prepared Dessert Fillings

• Prepared Icings, Frostings

• Spreads With Restricted Ingredients • Cake Decorations

• Confectionery

• Commercial Candies

BEVERAGES

• Plain Milk

• Pure Juices Of Allowed Fruits And

Vegetables

• Plain And Carbonated Mineral Water

• Coffee *not recommended due to

tachycardia masto symptoms. Patients report Maxwell House coffee as less problematic than other brands.

• Fruit Drinks And Cocktails With Restricted Ingredients

• Cola Type Carbonated Drinks

• Apple Cider

• All Teas, Including Green Tea

• All Alcoholic Beverages

• Nonalcoholic Beers And Wines

• All Drinks With "Flavor" Or "Spices"

On The Label

OTHER

• Baking Powder

• Baking Soda

• Cream Of Tartar

• Plain Gelatin

• Homemade Relishes With Allowed Ingredients

• Baker's Yeast

• All Vinegars

• Prepared Pickles, Relishes, Ketchup,

And Mustard Containing Vinegar

• Flavoured Gelatin (eg. Jello)

• Chocolate And Cocoa

• Mincemeat

• Yeasts Of The Species Saccharomyces

• Brewer's Yeast

• Nutritional Yeast

• Yeast And Meat Extracts (eg.) Bovril,

Marmite, Oxo, Vegemite

Additional information regarding foods and eating while living with a mast cell disorder:-

The following notes are intended for those who do not have TRUE food allergies. If you have been positively tested as truly allergic to any food or drink below, this will not apply to you. Same warning applies for above listed items within the diet.

Despite this diet, for our disorders, typically we find that avoiding entirely or at least limiting our intake of wheat, sugar/sweets, dairy, spices, processed foods, and preservatives, resolves many of our difficulties with food. Home cooking and/or raw natural foods seem to be safest for us. Most patients have adjusted their food and drink intake to mirror the diets for Celiac disease and/or Irritable Bowel Syndrome. Many of those same foods and sensitivities apply for mast cell disorders. Additionally, many of us are sensitive to Salicylates as well. Dr. Joneja has a full Salicylate Diet in her book.

[Saassii in reply to Saassii]

Provided with permission of author, Dr. Joneja, by MASTOCYTOSIS SOCIETY CANADA (Updated Nov.2012) The Histamine & Tyramine Restricted Diet & Food Guidelines for Mast Cell Disorders

Regarding meats, histamine rises as meat cooks and continues to rise after cooking. Leftovers are typically not safe for us as we all tend to react badly to precooked foods. It may help you to limit the amount of histamine released in cooked meat by immediately putting it in the freezer after cooking. The freezing stops the histamine release. Whereas refrigeration allows the histamine release to continue in meat. Red Meats are hardest on us as they are usually from animals who had antibiotics injected or were force fed etc. Similar reports from patients regarding Chicken. Many have found that organic meats (not force fed, not injected with antibiotics, not held together with “glue meat”) are safest for us. Pork seems okay however Ham is problematic for most.

Raw vegetables (from the Allowed list) seem to offer great benefit for health for most of us. Cooking your vegetables is fine, but raw vegetables deliver greater nutrients. Some patients have reported great improvement in symptoms and illness level by following a completely raw food diet. If you cook fresh vegetables, steaming them will preserve more nutrients and they will also taste better!

Supplements are necessary for most of us. Probiotics, Prebiotics, Omega 3-6-9 and Ester C have been reported as extremely beneficial and helpful in limiting reactions to foods, even those on the restricted list. We suggest the Canadian brand SISU supplements of Dophilus Plus and Citrus Free Ester C taken daily. Alternatively, many patients report Jamieson supplements as safest and most effective. Note about Omega supplements – ensure it is derived from FLAX and NOT from fish.

Top two consistent recommendations from patients repeatedly has been Olive Oil (not olives, just the oil) and Coconut, as being very safe and beneficial. Coconut is available as a butter and an oil which makes it a great alternative to dairy butter etc. Suggested sources are Canadian online store Well.ca or your local health food store for pure organic sources of Coconut butter and oil.

About Chocolate.... Milk chocolate is definitely not helpful. However, occasionally, if you want to have a bit of chocolate, Dark Chocolate is safest and has more health benefits. Be very careful though. Not all of us are able to cheat with the same things. We all react variably to foods and drinks. It’s very individual figuring it out.

Dining out is difficult for most of us. We tend to eat at home with freshly prepared meals. This is because restaurant food supplies are sprayed or injected with preservatives to keep them fresh as long as possible. We react to the preservatives (on salads too - lettuce etc.). There is also the risk of a restaurant food prepared on a surface which has residue from other foods, some of which may not be safe for us.

If travelling and/or dining out, many of us often only eat one large meal at end of day or else we take an extra dose of H1 and H2 antihistamines prior to eating a meal. We also keep a bottle of Children's Benadryl Allergy Liquid (or Benadryl tablets) on hand to take 2 sips (equivalent to 2 tablespoons) immediately before or after eating, to help limit reactions. Note that Benadryl passes through your system quickly, so taking an extra dose of meds may be more effective. Taking both an extra dose of meds along with sips of Benadryl is fine if needed. An alternative is creating a snack package of vegetables to nibble on – raw/uncooked, fresh, cleaned, and chopped up.

Alcohols (Beer, Wine, Hard Liquor) and Teas are high in histamine naturally. So those are best avoided entirely. Some are able to have herbal teas without difficulty (Camomile, for instance). Be careful with Green Tea as that, in particular, provokes mast cell degranulation. Some are able to have alcohol in moderation very occasionally.

Coffee is hit and miss with many of us. If you are able to have coffee, freshly brewed is best. Avoid instant and/or flavoured coffees, if you can.

Potatoes and Onions are typically very difficult for most of us. However, patients have reported success with red potatoes and red onions, in moderation and on an irregular basis.

Breads are usually a full AVOID item for us. Patients report tolerating Light Rye Bread without Preservatives, a couple of brands make this bread and it’s typically available in most grocery stores. Usually near the deli section. It’s pricier than other breads but seems safest for many.

[Saassii in reply to Saassii]

If you'd like that emailed in a better format pm me your email address.

[Chocolatepudding in reply to Saassii]

Oh my goodness! This is amazing! Thank you! this is extremely helpful. Honestly I rarely eat out, I prefer home cooked meals so I think I’m on the right track. I’ve realise that I somewhat follow this diet naturally however chocolate is something else, I struggle with this one as you might have guessed from my username. I absolutely love dark chocolate so i’ll just continue on with that. This is incredible. I’m going to order the books you mentioned and stay on a strict diet hoping that I will get some relief. I had a very bad day yesterday and I think it was a combination of things. Stress obviously doesn’t help so I’m finding ways to reduce the stress. At this point I’m willing to try anything I just want to be pain free.

[weazle74]

hi i am having same promblem pass two months and they dident find anything wrong i also pass blood i dont know what to do i have lower and back pains and i feel bad. now i will go back to oyrologist and see i dident get ct scan .. maybe is a new germ and is not showing in urine test i dont know is very uncoftable i know how you feel ask your doctor for cystoscopy and get a check up with gynegologist

[Chocolatepudding in reply to weazle74]

Did you have a cystoscopy/ dilation done by any chance?

[Chocolatepudding]

I had an appointment today with a urologist and I was told that I have interstitial cystitis/painful bladder syndrome. The urologist said that he wouldn’t put that label on me as I’m young and my symptoms may improve and I don’t need that additional pressure of a label. I was told that he would use a camera to have a look inside and stretch out my bladder. I asked if that was necessary and he said that I could either live with this or have this procedure done and he said he wouldn’t pressure me at all. I’m currently waiting for an appointment but I’m terrified. I don’t know if I want this procedure done. What if it gets worse? Any advice?

[CatsAreLife]

Are you still out thereChocolatepudding? I’m new to this forum today and if you read my first post you’ll see I’ve had similar issues to you and am waiting for a dilation under GA, which terrifies me. Did you have your’s done and how are things?

[cakenomore in reply to CatsAreLife]

I'd also be interested in the out come chocolatepudding. I have had the same symptoms as you since July. Urine test were normal. Naproxen was the only thing that helped. Just had a steroid injection and that seems to have calmed things down a bit. Not speaking with urologist until November!