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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
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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
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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
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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
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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
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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
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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
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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
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The only activity that I see on the 2nd is a screening fair. Am I missing something?? -Jessica
I only found this:
April 2, 2005Celiac Disease Center
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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
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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
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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
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Welcome back kiddo!! Now get off the computer and GO REST!!!! You just had surgery silly. Take care of yourself.
-Jessica
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Here is another thing that could be displayed in an office. You need adobe acrobat to open it. Open Original Shared Link
-Jessica
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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
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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
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Steff-
Gluten Free Living website is : Open Original Shared Link
Living Without Magazine is here : Open Original Shared Link
Hope that helps you!
-Jessica
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Sorry I had to be the one to bum you guys out, but hopefully with us calling it might change their minds!! ha
-Jessica
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Several of us that post on this board are in that book (just a side note).
-Jessica
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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
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I have always heard that we are not supposed to lick them. I just buy the peel and stick ones.
However I have never seen any proof or research that goes either way on the issue.
I guess I just go twards the safe side of things with the peel and stick. When I have one that is lickable, i use a wet paper towel to seal it. I'd rather be safe than sorry.
-Jessica
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You can also find it at the Gluten Free Pantry Open Original Shared Link
Great bread bakers have always relied on dough enhancer to maker their bread lighter and fluffier. But gluten-free bakers have been excluded from that group because most dough enhancers contain gluten. Thanks to Bette Hagman, we've found a dough enhancer that helps gluten-free bakers bake velvety, moist breads with less crumble and longer shelf life. Add 1-2 tablespoons to any bread recipe. Comes in a reusable can. Needs no refrigeration.Ingredients: whey, soy lecithin, tofu, citric acid, dry yeast, sea salt, natural spice blend, corn starch, vitamin C (ascorbic acid), natural flavor.
Hope that helps!!
-Jessica
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Well folks, I know alot of us use this brand of cereal because it is mainstream and easy to find. I found out some cruddy information this morning after a post on the board prompted me to look into the cereal.
They had taken their gluten-free cereal list off of their web page so I called the customer service to check on the gluten-free status and here is what I found:
They are going to be making some of the previously gluten-free cereals NOT gluten-free now, beginning late this comming summer. This is because the FDA has not set regulations for gluten, and they do not test at their facility, so they are adding the gluten to basically cover their butt!! GRRRRRRRR The cereals were already made on non dedicated lines that were washed between batches. They never tested for gluten content on batches.
The fruity dyno bites will be the cereal that is NOT changing and they are made on a dedicated line accoring to the customer service rep (BTW she was SOOOO nice).
SOOOOOOO what it all boils down to IS:
Until late summer (she said watch for label changes) the following cereals remain on their gluten free list:
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Ok........Here is the story that I recieved from Malt-O-Meal company this morning:
They are going to be making some of the previously gluten-free cereals NOT gluten-free now, beginning late this comming summer. This is because the FDA has not set regulations for gluten, and they do not test at their facility, so they are adding the gluten to basically cover their butt!! GRRRRRRRR The cereals were already made on non dedicated lines that were washed between batches. They never tested for gluten content on batches.
The fruity dyno bites will be the cereal that is NOT changing and they are made on a dedicated line accoring to the customer service rep (BTW she was SOOOO nice).
SOOOOOOO what it all boils down to IS:
Until late summer (she said watch for label changes) the following cereals remain on their gluten free list:
Kid-friendly Granola Bars
in Parents, Friends and Loved Ones of Celiacs
Posted
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