Tuesday, June 23, 2009

Repost Celiac Disease in a nutshell

This is a repost of a post I did August 2008. I have lots of new readers now and it is something I would like more people to see. I hope it helps someone who didn't know about the disease. It is a very long post but it might change your life or someone around you.

Original post:
I get a lot of emails from people wondering about Celiac Disease so I thought I would make a nice little page to refer to since some people may be too scared to ask.
Seriously I will never ever be bothered by a question on Celiac. It is my life and my cause.

The proper name is Celiac-Sprue or in other countries it is called Coeliac.
Celiac is an autoimmune disease and it is NOT an allergy.
In an allergic reaction, the body responds to the allergen by binding directly to the allergen and releasing chemicals that cause allergic symptoms. In contrast, celiacs' bodies respond to the presence of gluten by attacking the body itself. Specifically, celiac symptoms are the result of the body attacking the villi in the small intestine, which are small projections within the intestine that are vital to the absorption of food and nutrients. Because celiacs' bodies do not produce histamine in response to gluten, antihistamines and other allergy drugs are not effective at relieving symptoms of gluten ingestion in celiacs. There is, at present, no way to relieve intestinal symptoms from celiac disease

There is NO PILL that you can take if you are celiac. The ONLY treatment is the ENTIRE elimination of Gluten. (more on what is gluten later)

Celiac has been called the great pretender because the symptoms are literally all over the board. You probably will never meet two celiac's with the same symptoms. Also some have no symptoms what so ever. BUT that is not a good sign because just because you are not showing symptoms does not mean that your villi are not being destroyed. In fact you might be in pretty rough shape intestine wise before you are diagnosed if that is the case because you said "but I have no symptoms" Celiac doesn't care!

SOME of the hundreds of reported symptoms

* Abdominal cramping/bloating
* Feet (Reduced fat padding)
* Abdominal distention
* Flatus (Passing gas)
* Acidosis
* Gluten ataxia
* Appetite (Increased to the point of craving)
* Mouth sores or cracks in the corners
* Back pain (Such as a result of collapsed lumbar vertebrae)
* Muscle cramping (Especially in the hands and legs)
* Constipation
* Night blindness
* Decreased ability to clot blood
* Skin (Very dry)
* Dehydration
* Stools (Loose? Hard? Small? Large? Foul smelling? Floating? Clay, Light tan or Gray-colored? Highly rancid? Frothy?)
* Diarrhea
* Tongue (Smooth or geographic - looks like different continents)
* Edema
* Tooth enamel defects
* Electrolyte depletion
* Weakness
* Energy loss
* Weight loss
* Fatigue
* Depression
* Disinterested in normal activities
* Irritable
* Mood changes
* Unable to concentrate

Dave had many symptoms over the years some that went misdiagnosed as different things, Here are the symptoms he had that went away once he went gluten free

Manic Depression, Drastic weight loss, constant stomach ache, tummy issues (you can take from that what you want), inability to put on any weight, ADD, Irritability at the drop of a hat and very very scary thoughts that would appear randomly and disappear again. Tooth enamel defects.

Because symptoms are all over the board doctors are well basically jerks when it comes to Celiac disease (I know I know not all are but as a whole they really are) My husband had 5, yes 5 biopsies before someone would call it Cealic. He had 8 blood tests that came back negative. His even had the gene test done. That said he carried a secondary gene but not the dominant gene that carries Celiac. There was a giant elephant in the room and they were calling it a unicorn, a monkey a damn hippo, until we found the one doctor that took the time to really pay attention and he said ITS AN ELEPHANT! he also said from looking at previous biopsies that his other doctors need their eyes checked because all those biopsies were positive. OOOH and best ever one doctor took a biopsy of his stomach instead of his intestine and diagnosed negative off that. (umm hello that's like a going to a foot doctor and them examining your elbow) We all got a good laugh at that. I hear he has since retired, not kidding.

Celiac can lay quiet for many years it takes an event to bring it out to the forefront. If you have Celiac you are born with it and it could stay quiet causing no harm all your life. The event that kicks it off decides when it is going to come out.
Some such documented events
pregnancy/giving birth
surgery
extreme stress
illness
trauma

Once the Celiac is active there is NO reversing it. Sorry but that's the truth. Dave went four years from onset of symptoms to diagnosis. Worst 4 years of our lives. We went to the ER no less that 15 times. The regular doctor dozens upon dozens. Once we counted 13 doctors that we remembered. He was so thin when he was diagnosed he looked anorexic. His was kicked into play by Giardia he got on a trip to Miami. ( you usually get it from "drinking the water" in Mexico as they say)


Ok so once you know you have Celiac the only cure is a gluten free diet. no gluten ever. Dave went gluten free 1/1/2004. He has not knowingly consumed gluten in 4.5 years. That does not mean he has not had any. Companies are not always the best at listing ALL the ingredients and more than one waiter in a restaurant has lied to our face. Basically there are only a handful of restaurants we can eat in and in the grocery store we can pretty much only shop around the edges of the store. In the past 4 years HUNDREDS of products have come out. The world is opening its eyes and making it easier but not cheaper for Celiacs. There is still a LONG way to go. We still have to grocery shop at multiple stores to get enough food for him.
OOH and a loaf of gluten free bread? $8.
Sadly it is not any cheaper to make it. The ingredients are expensive and very very volatile and I would not be exaggerating to say for every 1 thing that came out good we had 4 that were so horrific we had to throw it away after a bite. Ask any celiac and they will tell you the war of baking stories.

So what CAN"T celiacs have??

Abyssinian Hard (Wheat triticum durum)
Alcohol (Spirits - Specific Types)
Amp-Isostearoyl Hydrolyzed Wheat Protein
Barley Grass (can contain seeds)
Barley Hordeum vulgare
Barley Malt
Beer
Bleached Flour
Blue Cheese (made with bread)
Bran
Bread Flour
Brewers Yeast
Brown Flour
Bulgur (Bulgar Wheat/Nuts)
Bulgur Wheat
Cereal Binding
Chilton
Club Wheat (Triticum aestivum subspecies compactum)
Common Wheat (Triticum aestivum)
Couscous
Dextrimaltose
Disodium Wheatgermamido Peg-2 Sulfosuccinate
Durum wheat (Triticum durum)
Edible Starch
Einkorn (Triticum monococcum)
Emmer (Triticum dicoccon)
Farina
Farina Graham
Filler
Flour (normally this is wheat)
Fu (dried wheat gluten)
Germ
Graham Flour
Granary Flour
Groats (barley, wheat)
Hard Wheat
Hydrolyzed Wheat Gluten
Hydrolyzed Wheat Protein
Hydrolyzed Wheat Protein Pg-Propyl Silanetriol
Hydrolyzed Wheat Starch
Hydroxypropyltrimonium Hydrolyzed Wheat Protein
Kamut (Pasta wheat)
Malt
Malt Extract
Malt Syrup
Malt Flavoring
Malt Vinegar
Macha Wheat (Triticum aestivum)
Matzo Semolina
Mir
Oriental Wheat (Triticum turanicum)
Pasta
Pearl Barley
Persian Wheat (Triticum carthlicum)
Poulard Wheat (Triticum turgidum)
Polish Wheat (Triticum polonicum)
Rice Malt (if barley or Koji are used)
Rye
Seitan
Semolina
Semolina Triticum
Shot Wheat (Triticum aestivum)
Small Spelt
Spirits (Specific Types)
Spelt (Triticum spelta)
Sprouted Wheat or Barley
Stearyldimoniumhydroxypropyl Hydrolyzed Wheat Protein
Strong Flour
Suet in Packets
Tabbouleh
Teriyaki Sauce
Textured Vegetable Protein - TVP
Timopheevi Wheat (Triticum timopheevii)
Triticale X triticosecale
Triticum Vulgare (Wheat) Flour Lipids
Triticum Vulgare (Wheat) Germ Extract
Triticum Vulgare (Wheat) Germ Oil
Udon (wheat noodles)
Unbleached Flour
Vavilovi Wheat (Triticum aestivum)
Vegetable Starch
Wheat, Abyssinian Hard triticum durum
Wheat amino acids
Wheat Bran Extract
Wheat, Bulgur
Wheat Durum Triticum
Wheat Germ Extract
Wheat Germ Glycerides
Wheat Germ Oil
Wheat Germamidopropyldimonium Hydroxypropyl Hydrolyzed Wheat Protein
Wheat Grass (can contain seeds)
Wheat Nuts
Wheat Protein
Wheat Triticum aestivum
Wheat Triticum Monococcum
Wheat (Triticum Vulgare) Bran Extract
Whole-Meal Flour
Wild Einkorn (Triticum boeotictim)
Wild Emmer (Triticum dicoccoides)
The following items may or may not contain gluten depending on where and how they are made, and it is sometimes necessary to check with the manufacturer to find out:
Artificial Color
Caramel Color
Coloring
Dextrins
Flavoring
Food Starch
Glucose Syrup
Gravy Cubes
Ground Spices
Maltodextrin
Maltose
Miso
Modified Food Starch
Modified Starch
Monosodium Glutimate (MSG)
Mustard Powder
Natural Flavoring
Shoyu (soy sauce)
Smoke Flavoring
Soba Noodles
Soy Sauce
Starch
Stock Cubes
Wheat Starch

So what CAN a celiac have???

Acacia Gum
Acorn Quercus
Adipic Acid
Adzuki Bean
Acacia Gum
Agar
Alcohol (Spirits - Specific Types)
Alfalfa
Algae
Algin
Alginate
Allicin
Almond Nut
Aluminum
Amaranth
Annatto
Annatto Color
Apple Cider Vinegar
Arabic Gum
Arrowroot
Artichokes
Artificial Flavoring
Aspartame (can cause IBS symptoms)
Aspic
Ascorbic Acid
Astragalus Gummifer
Baking Soda & Powder (check)
Balsamic Vinegar
Beans
Bean, Adzuki
Bean, Hyacinth
Bean, Lentil
Bean, Mung
Bean Romano (Chickpea)
Bean Tepary
Benzoic acid
Besan
Betaine
BHA
BHT
Beta Carotene
Bicarbonate of Soda (check)
Biotin
Buckwheat
Butter (check additives)
Butylated Hydroxyanisole
Butyl Compounds
Calcium Carbonate
Calcium Caseinate
Calcium Chloride
Calcium Disodium
Calcium Phosphate
Calcium Silicate
Calcium Stearate
Calcium Sulfate
Camphor
Canola Oil (Rapeseed Oil)
Caprylic Acid
Carageenan Chondrus Crispus
Carboxymethylcellulose
Carnauba Wax
Carob Bean
Carob Bean Gum
Carob Flour
Carrageenan
Casein
Cassava Manihot Esculenta
Castor Oil
Cellulose1
Cellulose Gum
Cetyl Alcohol
Cheeses
- (check ingredients)
Chestnuts
Chickpea
Chlorella
Chymosin
Citric Acid
Collagen
Corn
Corn Gluten
Corn Meal
Corn Flour
Cornstarch
Corn Syrup
Corn Syrup Solids
Corn Swetener
Cortisone
Cotton Seed Oil
Cowitch
Cowpea
Cream of Tartar
Cysteine, L
Demineralized Whey
Desamidocollagen
Dextrose
Dioctyl Sodium
Distilled Vinegar
Eggs
Elastin
Ester Gum
Ethyl Alcohol
Ferrous Gluconate
Fish (fresh)
Flaked Rice
Flax
Folic Acid-Folacin
Formaldehyde
Fructose
Fruit (including dried)
Fumaric Acid
Gelatin
Glutamate (free)
Glutamic Acid
Glutamine (amino acid)
Glycerides
Glycerol Monooleate
Glycol Monosterate
Glycol
Glycolic acid
Gram flour (chick peas)
Grits, Corn
Guar Gum
Hemp
Herbs
Honey
Hyacinth Bean
Hydrogen Peroxide
Hydrolyzed soy protein
Iodine
Inulin
Invert Sugar
Jobs Tears
Kasha (roasted buckwheat)
Keratin
Kudzu Root Starch
Lactic Acid
Lactose
Lanolin
Lecithin
Lentil
Lipase
Locust Bean Gum
Magnesium Carbonate
Magnesium Hydroxide
Maize
Maize Waxy
Malic Acid
Maltitol
Maltodextrin
Manioc
Masa
Masa Flour
Masa Harina
Meat (fresh)
Methyl Cellulose2
Microcrystallin Cellulose
Milk
Millet
Milo
Mineral Oil
Mineral Salts
Mono and Diglycerides
Monosodium Glutamate MSG (made in USA)
Monopotassium Phosphate
Mung Bean
Musk
Niacin-Niacinamide
Nuts (except wheat, rye & barley)
Nut, Acron
Nut, Almond
Oats3
Oils and Fats
Oleyl Alcohol/Oil
Paraffin
Peas
Pea - Chick
Pea - Cow
Pea Flour
Pepsin
Peru Balsam
Petrolatum
Phenylalanine
Pigeon Peas
Polenta
Polyethylene Glycol
Polyglycerol
Polysorbates
Potassium Citrate
Potassium Iodide
Potassium Sorbate
Potatoes
Potato Flour
Prinus
Pristane
Propolis
Propylene Glycol
Propylene Glycol Monosterate
Propyl Gallate
Psyllium
Pyridoxine Hydrochloride
Quinoa
Ragi
Rape
Rennet
reticulin
Rice
Rice (Enriched)
Rice Flour
Rice Vinegar
Romano Bean (chickpea)
Rosin
Royal Jelly
Sago Palm
Sago Flour
Saifun (bean threads)
Scotch Whisky
Seaweed
Seeds (except wheat, rye & barley)
Seed - Sesame
Seed - Sunflower
Sphingolipids
Soba (be sure its 100% buckwheat)
Sodium Acid Pyrophosphate
Sodium Alginate
Sodium Ascorbate
Sodium Benzoate
Sodium Caseinate
Sodium Citrate
Sodium Erythrobate
Sodium Hexametaphosphate
Sodium Lauryl Sulfate
Sodium Nitrate
Sodium Phosphate
Sodium Silacoaluminate
Sodium Stannate
Sorbic Acid
Sorbitol-Mannitol (can cause IBS symptoms)
Sorghum
Sorghum Flour
Soy
Soybean
Soy Lecithin
Spices (pure)
Spirits (Specific Types)
Stearates
Stearamide
Stearamine
Stearic Acid
Subflower Seed
Succotash (corn and beans)
Sucrose
Sulfosuccinate
Sulfites
Sulfur Dioxide
Sweet Chestnut Flour
Tallow
Tapioca
Tapioca Flour
Tarrow Root
Tartaric Acid
TBHQ is Tetra or Tributylhydroquinone
Tea
Tea-Tree Oil
Teff
Teff Flour
Tepary Bean
Thiamine Hydrochoride
Tofu-Soya Curd
Tolu Balsam
Tragacanth
Tragacanth Gum
Tri-Calcium Phosphate
Turmeric (Kurkuma)
Tyrosine
Urad/Urid Beans
Urad/Urid Dal (peas) Vegetables
Urad/Urid flour
Vinegar (All except Malt)
Vanilla Extract
Vanilla Flavoring
Vanillin
Vinegars (Specific Types)
Vitamin A (retinol)
Waxy Maize
Whey
White Vinegar
Wines
Wine Vinegars (& Balsamic)
Wild Rice
Xanthan Gum
Yam Flour
Yogurt (plain, unflavored)

OOH and you have to make sure to read all the products you touch.
Things we have found gluten in (there are HUNDREDS MORE this is just some everyday things)
makeup
shampoo and conditioner
lotion
toothpaste
polishing stuff at dentist
hand soap

and my favorite BRAWNY PAPER TOWELS!!!

why does it matter in items you touch?? Well cause you eat with your hands and even if you don't think you eat your shampoo what does it matter? It does. Poor dave had rashes all over him until we noticed the shampoo had wheat in it.


So in a nutshell (all be it a big shell) that is Celiac. There is no cheating no just a little piece of wheat it won't hurt me. 1/40th of a slice of bread is enough to cause enough villi damage that it can take 1-2 months to heal from JUST THAT CRUMB!


any questions please ask. :)

1 comment:

BAM said...

That was a fantastically, eye-opening description. Thanks for sharing all the information you've learned!