Gluten Free RN » Celiac Disease

Everyone on a Gluten Free Diet?

Nadine Grzeskowiak — Tue, 13 May 2008 19:42:16 +0000

I have thought for a long time about this very question. Who would suggest such a thing? I would. The main reason I would dare to make such a statement is because we have been so negligent in recognizing and treating people with celiac disease. Not a day goes by that I don’t hear about or speak to someone directly who has suffered needlessly for years. The other main point I want to make is that NONE of the currently available testing is 100%. The blood tests and endoscopic biopsies are great tools if they are positive. If they are negative, I have heard of too many people tell me ‘I don’t have celiac disease, my blood test/biopsy was negative’. This is a major cause for concern to me. Both of these tests do not confirm you don’t have, or will never develop celiac disease. First, neither test is 100% reliable. Second, both tests are simply a snapshot of right now. I have also seen test results that are clearly positive for celiac disease, but read as negative by a medical provider that does not understand what the results mean. The genetic testing is great and it is my first choice when testing people. The test is a cheek swab, I get results in one week and it is covered by most insurances. I utilize Kimball Genetics in Denver, Colorado, www.kimballgenetics.com. I have run into this scenerio in the past week: a 12 year old on a gluten free diet for several months, a remarkable recovery from many symptoms while on the gluten free diet, and yet, she tests negative for DQ2 and DQ8. Is she at risk for celiac disease if she eats gluten? Are there other genes that could be looked at? I am gathering more data on this because nothing is black and white with gluten intolerance, there are many grey areas. Other than, of course, the need to be on a strict gluten free diet for the rest of your life if you have celiac disease. Not much grey there.

So, this leads me back to the original question: everyone on a gluten free diet? In my perfect world, the answer would be a resounding YES! If people would simply try the gluten free diet for a month, most, if not all of those people will feel better. It remains simply a diet change. Change your diet and feel better, doesn’t that sound appealing. To some yes, and to others, not really. Not without the proof that they need to change their long held diet and lifestyle habits. It also sounds quite un-American to say ‘I can’t eat wheat, barley, rye and oats’, by extension, bread, pies, cakes, beer and pizza. My most recent convert to a gluten free diet, said to me, “You know I don’t even miss the bread anymore, it doesn’t even appeal to me, I feel so much better on the gluten free food”. This is a woman who has had symptoms for most of her 76 years and I had a hard time convincing her to try the gluten free diet for a month. She is convinced now. I can tell many stories with the same happy ending. I can also tell you that most men have a harder time changing anything, let alone their diet, than women. Trust me, I am a nurse and I have no reason to lie to you. Try it. Go gluten free for a month and contact me with your results. GO!

Questions That Need Answers Regarding Celiac Disease

Nadine Grzeskowiak — Sun, 20 Apr 2008 02:05:26 +0000

These are some of the many questions I am interested in exploring myself, or perhaps YOU know the answer. I encourage you to THINK and to ASK questions.

Why isn’t there one study in the whole country on the incidence of Celiac Disease in the Native American population? I asked this question, a search was completed that came back with no published research data and no current studies in progress. How can this be?
I have offered to give presentations or inservices to every physician group I know. Not one physician group has taken me up on my offer. WHY NOT?
How come in 2004 the NIH launched a Celiac Disease Awareness Campaign and no one heard about it? Not one healthcare professional I have spoken to knows about this campaign OR Celiac Disease.
Why are physicians so sure that even if they DID diagnose Celiac Disease, the diet is SO hard, no one would follow it? I have had this conversation many times, with many doctors. One even professed to have tried the diet and failed, (See ‘stupid things doctors say’).
Are Asian people at risk for Celiac Disease, or not?
If the rate of Celiac Disease in Sub-Sahara Africa is 1:65, why are we feeding the starving children wheat?
Is anyone going to start telling African-Americans that they have a higher risk for Celiac Disease?
Why are the pharmaceuticals spending MILLIONS of dollars to develop a PILL for Celiac Disease? The treatment is a diet change.
How DID an entire disease process, known to the rest of the world, get hidden by the United States for over 120 years?
Why is the media SO slow to pick up this humiliating story and give it the coverage it deserves?
To the doctors: How many patients in your practice have you diagnosed with Celiac Disease?
To the nurses: I challenge you to be patient advocates and learn the symptoms of Celiac Disease.

Associated Disorders of Celiac Disease

Nadine Grzeskowiak — Sat, 19 Apr 2008 16:59:02 +0000

Anyone with these associated diagnoses should be tested for Celiac Disease OR should consider a Gluten Free Diet for at least a month.

IBS/IBD, GERD, Any Gastrointestinal Disorder
Chronic Anemia, Blood Disorders
Migraine Headaches
Neuropathy
Any Skin Rash, Eczema, Psoriasis
Osteoporosis/Osteopenia
Chronic Fatigue Syndrome
Fibromyalgia
Arthritis
Lymphoma
Cancers, Bowel and others
Turner’s Syndrome, Down Syndrome, William’s Syndrome, IgA deficiency
Infertility
Any Other Auto-Immune Disorder (Thyroid Disorders, Type 1 Diabetes, Sjogren’s Syndrome, Liver Disease, Arthritis, Lupus, Multiple Sclerosis, Sarcoidosis, Cardiomyopathy, Addison’s Disease)
Aphthous Stomatitis/ Canker Sores
Allergies
Asthma
ADHD, Austism, ODD, ADD

Signs and Symptoms of Gluten Intolerance / Celiac Disease

Nadine Grzeskowiak — Sat, 19 Apr 2008 16:38:07 +0000

This is a listing of some of the major signs and symptoms of gluten intolerance and celiac disease.

Acne
Chronic Anemia
Thyroid disorders
Osteoporosis
Bloating, Constipation, Diarrhea, Farting, Burping, Vomiting, Acid Reflux, Heartburn
Irritability, Depression, Mood Disorders,
Weight Loss OR Weight Gain
Allergies
Asthma, Breathing Problems
Short Stature
Itchy Skin, Skin Rashes
Joint and Muscle Pain
Infertility
Dental Problems
Bruising, Nosebleeds
Vitamin and Mineral Deficiencies
Lymphoma and Cancer
Mental Health Disorders
Hair Loss
Headaches, Migraines
Fatigue
Eating Disorders
Lactose Intolerance
Neuropathy, Numbness and Tingling
Foggy Brain, Unable to Concentrate, Difficulty Focusing
Insomnia, Difficulty Sleeping

Welcome to Gluten Free RN!

Nadine Grzeskowiak — Sat, 19 Apr 2008 14:52:13 +0000

Hi, my name is Nadine Grzeskowiak and I am a registered nurse with 16 years experience in emergency and trauma nursing. I realize now, in hindsight, I have had symptoms of celiac disease my entire life. When I was finally diagnosed correctly, at the age of 40, I gave myself 6 months to live. My body was dying and I couldn’t figure out the cause, and I am a nurse… Had I listened to the doctors I saw over that period of time, I would be dead, certainly by now. ”The celiac serology was all normal. I assume the dermatologist will talk to you about alternative causes of herpitiformis dermatitis(sic).” Some of you are laughing already. I have the paper that was sent to me by one of the doctors I saw, if you ever want to see it. This happened to me. I am horrified every day by stories I hear about other people. Nice people that are trying to be good patients, don’t know the questions to ask and naively believe their doctors.

My goals are simple. Get EVERYONE on a gluten free diet, at least for a month. I will test anyone that wants or needs to be tested. Hopefully, through education, people will start asking to be tested for celiac disease FIRST, and not have to wait until they are almost dead to find out the foods they eat every day are killing them, literally.

Please know that first and foremost, I am a nurse. My DUTY is to be a patient advocate at all times. I will find and get the most accurate, up to date information from all over the world. Sometimes I will be wrong. Please bring errors to my attention, and we will have a discussion. I want YOU to ask questions. My main question is ‘How can you hide and pretend an entire disease process doesn’t exist?’ Celiac disease was officially recognized as a disease in 1888…I, as a nurse, didn’t hear about it until I got diagnosed, in November 2006.