angel-jd1

I know this isn't "homemade", however if I am going to eat pizza, then darnit I am NOT spending all day in the kitchen making it.

I use amy's rice crust pizza, fry some hamburger, onions, and peppers. Top the amy's pizza with my toppings (pepparoni, mushrooms, hamburger mixture, more cheese) and bake in the oven.

I have tried some of the other crusts and this seems to be the best solution for me.

-Jessica

Here is a letter that I use sometimes, I found it somewhere and changed a few things in it:

Madam/Sir,

I have Celiac Disease and am unable to eat foods with gluten in them.

Gluten can be found in wheat, rye, barley and oats and their

byproducts. Celiacs do not have problems with corn, rice, tapioca or

potatoes. Can you list for me foods that you make which are gluten

free? Things to look out for and consider are foods containing any

kind of:

whole grain wheat, rye, barley or oats

regular flour (white, unbleached or whole wheat)

rye flour

oats or oat flour

malt

I also need to be concerned about ingredients which may have a

variety of sources, like:

modified food starch (can your supply come from wheat, rye, barley or

oats?)

natural flavors (if HVP is included it may come from toxic grains)

spices (which often use flour as an anti-caking agent without listing

the flour)

vinegar (if its source is one of the forbidden grains, we prefer to

avoid it)

alcohol (same as vinegar)

caramel coloring

Finally, another concern is the environment in which the food is

manufactured and packaged. We need to know if a food is produced on

the same line as any other item which contains any of the above

problem foods, since even trace amounts of gluten damage a celiac's

body, and cross-contamination would be an issue in this situation.

Thank you in advance for your careful research of these issues, and I

look forward to hearing from you.

Sincerely,

Sometimes I just use this:

Dear ______________

I was wanting to know if your products contain gluten? Thank you for your time and careful research.

-_____________

The first letter seems too long, I seem to get better responses from something short and to the point. Hope it helps you out.

-Jessica

You need to speak with your doctor immediately. Depending on the medication, quitting it "cold turkey" could do some severe damage also!!!! So against the advice of others, please do NOT stop taking your meds until you talk to your doctor. BUT you do need to speak with him/her immediately. Taking meds that contain gluten isn't safe either, but the effects of stopping a medication cold turkey could also be very severe.

-Jessica

Envirokidz had some issues about a year ago with contamination. They were not testing their batches to make sure they were OK. I sure hope this problem isn't comming up again. You might try giving them a call to see when the last time they tested was.

-Jessica

Those sound really good. I miss granola bars a lot. I had gotten a granola bar mix from Miss Roben's and it just didn't have much flavor. I'll have to try these, sounds good!!

-Jessica

Here is a list that GFforlife compiled on the "old" celiac.com board. It has some of the symptoms. The complete list of 200+ came from the NIH conference last summer, however it was never released because the symptoms change or some other odd reason. But this list is very good so here it is:

Most of this was compiled from the aafp.org and celiac.com websites info on celiac symptoms.

List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):

Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)

Inanition (exhaustion, as from lack of nourishment)

Depression

Fatigue (often chronic)

Irritability

Fuzzy-mindedness after gluten ingestion

Dental enamel defects (lots of dental cavities due to weak enamel)

General malnutrition with or without weightloss

Any problem associated with vitamin deficiencies

Diarrhea

Constipation

Lactose intolerance

Flatulence

Anorexia

Nausea

Vomiting

Burning sensation in the throat

Abdominal pain and bloating

Borborygmi (audible bowel sounds)

Abdominal distention

Steatorrhea (fatty stools that float rather than sink)

Foul smelling stools

Bulky, greasy stools

Anemia (iron deficiency)

Hemorrhagic diathesis (bleeding disorder)

Osteoporosis/osteopenia (bone loss or thinning)

Bone pain (especially nocturnal)

White flecks on fingernails

Short stature (due to slow growth)

Arthritis

Rheumatoid arthritis

Arthralgia (pain in the joints)

Tetany (spasms and twitching of the muscles)

Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)

Amenorrhea (absence of menstrual bleeding)

Delayed puberty

Infertility

Impotence

Cheilosis (inflammation, cracking and dryness of the lips)

*Angular cheilosis (specifically cracking in the corners of the lips)

Glossitis (swollen tongue)

Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)

Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)

Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)

Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)

*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)

Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)

Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)

Edema (accumulation of serum-like fluid in the body tissues)

Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)

Selective IgA deficiency

Seizures, with or without occipital calcification

Hepatitis (inflammation of the liver, may be acute or chronic)

Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)

Liver disease

Xerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)

Night blindness (inability to see well in dim light)

Thyroid disease

Unexplained neuropathic illnesses, including ataxia and peripheral neuropathy

*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)

*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)

Dementia

Diabetes mellitus type 1

Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)

Collagen disorders

Down syndrome

IgA neuropathy

Fibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)

Hyposplenism, with atrophy of the spleen (underactive spleen)

Pancreatitis (inflammation of the pancreas)

Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)

Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)

Coagulopathy (blood clotting disorder)

Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)

Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)

Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)

In children:

Failure to thrive

Irritability

Paleness

Fretfulness

Inability to concentrate

Emotional withdrawal or excessive dependence

Nausea

Pale, malodorous, bulky stools

Frequent, foamy diarrhea

Wasted buttocks

Anorexia

Malnutrition:

*With protuberant abdomen (with or without painful bloating)

*Muscle wasting of buttocks, thighs, and proximal arms

*With or without diarrhea

(as well as any number of the above diseases and disorders)

Additional information:

Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease. list from celiac.com message board

-Jessica

Donna-

You are not going to absorb gluten vaginally. The gluten must pass through your intestinal system to do damage. The only reason you would need to worry is if you have DH. Otherwise you should be fine. Gellcaps are made of gelatin which is usually made of animal bone.

You could just have a burning from the medication itself. Nothing to do with gluten. Call tomorrow and talk to your doctor about it. Call the 1800 number for the company that makes the product.

-Jessica

the info can be found here: Open Original Shared Link

The camp seems to be held June 12-18, 2005

GIG Kids Camp East

at Camp Kanata, NC. Their website is : Open Original Shared Link

-Jessica

Steff-

YMCA does gluten free camps for kids through the GIG (gluten intollerance group). You might want to try to contact that "camp" to see how they do things and how they got set up. I know they have been doing it for a while now.

-Jessica

The first thing that screams out at me is the mcd's shake. CONTAMINATION!!! They use the same equipment to make malts and shakes. Unless you asked them to clean the machine, it was probably contaminated.

Also, maybe you are having some issues with dairy!?! Many people do and get the same type of symptoms as when they get "glutened". You might start keeping track of how you feel after eating dairy products.

You CAN get contaminated from kissing. Ask the hubby to use mouthwash or brush his teeth after eating gluten. That should take care of things and you can be kissy.

As far as vitamins go, I take nature made. They say right on the labels if they are gluten free or not. You can get them at the regular store for regular prices.

Antibiotics and other meds, you will have to call the company on all meds. Ask the pharmacist for the name of the drug company and then do a search online for their number if the pharmacy doesn't have it. Give them a call and see what they say about their gluten-free status.

If you haven't called yet you need to check out your birth control, any allergy meds, and anything else that you might be on.

Have you checked things like your toothpaste, lotions, shampoos, hand soaps? Those are easy ways to contaminate yourself also.

It DOES get easier as time goes on. Hang in there. Pretty soon you will be an old hat at this.

-Jessica

I had tried making those nuggets with the potato chips. I really didn't care for them much. They tasted "ok". They were just way too much work for what came out. I wouldn't waste my time making them again. Just my opinion.

However, I bet it would make a good coating for the fish you suggested.

-Jessica

To me, any situation where you can mention celiac disease creates awareness. Awareness of the disease is what we need more of. I'm not sure HOW it could be negative to create awareness for us as a group.

Talk about it, spread the word, lay out the brochures if you can't talk directly to the people.

-Jessica

There are over 200 symptoms associated with celiac. Muscle and joint aches and pains are among those. Possibly you are still getting some gluten. You could post a list of your diet here lately (including brand names) and people could check it over for possible issues. That always seems to help people out a lot.

As far as the diagnosis part goes, you have to make that call for yourself. You would have to go back on gluten for 3-6 months eating the equivilent of a couple pieces of bread a day in order for the tests to show accurate results. Meaning, for you to damage your intestines again. You have to decide if being sick again is what you want to do.

When you have children they are not guaranteed to get your gene for celiac. There is always a posability that they would be able to eat gluten and be fine. If they were to show signs of celiac, then you should have them tested. I wouldn't worry too much about that until the time comes.

Hope that helps a little.

-Jessica

The only activity that I see on the 2nd is a screening fair. Am I missing something?? -Jessica

I only found this:

April 2, 2005

Celiac Disease Center

Have you checked the gluten free status on both meds?

Could also just be your body adjusting to the change in medications, and not necessarily a gluten reaction. Have you talked with your doctor?

-Jessica

I found some small heart shaped reeses pb at valentines day that had wheat flour in them. They were wrapped in the foil, not the plastic. Just teaches us that we ALWAYS need to read labels!! Hershey is a company where I feel very confident reading their labels and knowing if I can have the food.

-Jessica

Herb-Ox is made by Hormel. It actually even states on the canister that the cubes come in "gluten free". I use it for cooking all the time. It can be found in the regular grocery stores.

-Jessica

Welcome back kiddo!! Now get off the computer and GO REST!!!! You just had surgery silly. Take care of yourself.

-Jessica

Here is another thing that could be displayed in an office. You need adobe acrobat to open it. Open Original Shared Link

-Jessica

Open Original Shared Link has low gluten hosts

I do not know the ingredients of theirs, I am sure you can contact them and ask. call 800-223-2772 or email altarbreads@benedictinesisters.org.

Hope that helps.

-Jessica

Friends of Celiac Disease has some great phamplets. They are not too overwhelming with information. They are great to give out just to "inform" people.

The celiac sprue association also will mail you phamplets for free.

You could always make your own phamplet with information that YOU think is important to know about celiac disease.

-Jessica

Steff-

Gluten Free Living website is : Open Original Shared Link

Living Without Magazine is here : Open Original Shared Link

Hope that helps you!

-Jessica

Sorry I had to be the one to bum you guys out, but hopefully with us calling it might change their minds!! ha

-Jessica

Several of us that post on this board are in that book (just a side note).

-Jessica

celiac3270-

Congrats, on the diagnosis (is that proper to say when somebody has to have surgery?? ha ) I have a friend who has that condition. Take care of yourself and you will be in my prayers and thoughts!! Good luck and don't worry about things too much, the added stress isn't good for you.

-Jessica