I have been trying to figure out what my problem is and I have tried the gluten free diet to see if there are any improvements....and I have been devoted now for almost a week and have completely cut gluten out, and I have noticed the past two days I have gone to the bathroom regularly, like same time two days in a row and my aches in my joints are improving. Is anyone else educated in Celiac Disease, and could tell me once they started the diet how and when they started seeing health improvements.
And for those of you who are going to say, "go to the doctor". I do plan on going before totally making a lifestyle change of any kind. But when I go, I want to be fully prepared with what makes me feel better, worse, gave me improvement, have a diet recall, etc....so I can be a step ahead to save money, you know, I want to minimize go back and forth!! Yup, I know about it.
The doctor will want to do do a scope of your intestines.One goes up and another goes down.
This will determine if your villi in your small intestine are damaged.
Depending upon the damage, it can take anywhere from a few weeks to months to "cure " you from this disease.
Look it up on the Internet and talk to your doctor.
Good luck. Hello! Alrighty, here I go!! (I'm a talker, but you asked!!) LOL
I was diagnosed by blood work 3.5 yrs ago and then went on the gluten free diet. (doign so saved my fertility and allowed me to get pregnant with my first son.)
If you feel better on the GF diet, it's a pretty good guess that you have Celiac Disease (CD) or Gluten intolerance.
Here is the situation, (I'll post the official info from a page) to be properly diagnosed you MUST be consuming gluten! For any blood work or endoscopy you have to be eating a 'significant amount'-to be determined by your doc--before the testing. Many folks use this as one last hurrah and eat all gluten they can find to make darn sure the tests ar eright!!
Here is the official info from my fave site:
What are the symptoms
of Celiac Disease?
The symptoms of celiac disease (CD) vary so widely among patients that there is no such thing as a "typical celiac." The amount of intestinal damage that has occurred and the length of time nutrient absorption has been abnormal seem to be the factors that determine the type and severity of symptoms experienced. It is interesting to note that some people with CD report no symptoms at all.
"Celiac disease is one of the great mimics in gastroenterology in particular and medicine in general. Of 100 patients with CD, just over 10 percent present with classical overt symptoms of malabsorption such as weight loss, diarrhea and nutritional deficiencies. About 10 percent are incorrectly diagnosed for some length of time, in some cases years. Forty percent present in an atypical manner, which leads to lengthy delay in diagnosis. About 33 percent of patients have clinically silent disease and 7 percent have latent CD (no symptoms or small bowel lesion but will develop CD later, or had disease at an early age and resolved)."
C. Robert Dahl, MD, "Celiac Disease: The Great Mimic Presentation," CSA Annual Conference, September 2000,
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A. The Patient's Physical State
What are the symptoms? How long have they been present? How often do they occur?
* 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 (See Stools below)
* Tongue (Smooth or geographic - looks like different continents)
* Edema
* Tooth enamel defects
* Electrolyte depletion
* Weakness
* Energy loss
* Weight loss
* Fatigue
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B. The Patient's Emotional State
What is the patient's emotional state? Is it consistent throughout the day? When and for how long do the symptoms occur?
* Depression
* Disinterested in normal activities
* Irritable
* Mood changes
* Unable to concentrate
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C. Additional Conditions
What else is involved? Other diseases? Other organs?
* Amenorrhea
* Iron-deficiency anemia
* Bone disease
* Hyperparathyroidism
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D. Symptoms in Children
How is the child developing?
* Slowly
* Not gaining weight
* Losing weight
Under age three:
* Growth failure
* Diarrhea
* Projectile vomiting
* Abdominal bloating/distention
Older children:
* Crankiness
* Difficulty concentrating
* Irritability
* Personality changes
* Poor memory
The medical information on this page was last reviewed/updated on January 1, 2004.
How is Celiac Disease Diagnosed?
When working with a physician to diagnose and/or confirm celiac disease (CD), three major steps are taken. First, a thorough physical examination is conducted, including a series of blood tests, sometimes referred to as the Celiac Blood Panel. Second, a duodenal biopsy is performed with multiple samples from multiple locations in the small intestine. And third, the gluten-free diet is implemented. When the patient shows a positive response to the diet - symptoms subside and the small intestine returns to its normal, healthy state - the diagnosis of CD is confirmed.
(NOTE: To ensure the most accurate and timely diagnosis, the gluten-free diet should be implemented only after the first two steps have been completed.)
1: Examination
Patient History
When reviewing a patient's medical history and symptoms with a physician, the following areas should be considered in the discussion: (The first three are applicable to adults and children. The last is specific to children.)
* What are the symptoms? How long have they been present? How often do they occur?
* What is the patient's emotional state? Is it consistent throughout the day? When and for how long do the symptoms occur?
* What else is involved? Other diseases? Other organs?
* How is the child developing?
See What are the Symptoms of Celiac Disease? for a thorough list of possible symptoms.
Physical Examination
Depending on the presentation of symptoms, the physician will check for some of the following items:
* emaciation
* pallor (due to anemia)
* hypotension (low blood pressure)
* edema (due to low levels of protein, [albumin] in the blood)
* dermatitis herpetiformis (skin lesions)
* easy bruising (lack of vitamin K)
* bone or skin and mucosa membrane changes due to vitamin deficiencies
* protruding or distended abdomen (intestine dysmotility)
* loss of various sensations in extremities including vibration, position and light touch (vitamin deficiency)
* signs of severe vitamin/mineral deficiencies which may include:
* -diminished deep tendon reflexes
* muscle spasms (magnesium and/or calcium deficiency)
* bone tenderness and bone pain (due to osteomalacia)
Blood Tests
A number of tests, sometimes collectively referred to as the Celiac Blood Panel, will aid the physician in diagnosis. The tests may include, but are not limited to:
*
Serologic Tests
1. EMA (Immunoglobulin A anti-endomysium antibodies)
2. AGA (IgA anti-gliadin antibodies)
3. AGG (IgG anti-gliadin antibodies)
4. tTGA (IgA anti-tissue transglutaminase)
* Tolerance or Measure of Digestion/Absorption Tests
1. Lactose tolerance test.
2. D-Xylose test.
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2: Biopsy
In the event that clinical signs and laboratory tests indicate probable malabsorption, a biopsy of the small intestine [jejunal] is called for. In this test, a small flexible biopsy instrument is passed through a tube, down the throat, through the stomach and into the upper end of the small intestine where patchy, multiple snippets of tissue are gathered. The tube is removed and the tissue samples are examined under a microscope for signs of injury.
How is Celiac Disease Treated?
Once the diagnosis of celiac disease (CD) has been confirmed, treatment can begin immediately. It does not require surgery. It does not require an unending dependence on medication. It does not even require repeated visits to the doctor's office. The best and only known treatment for CD is simply this: a lifelong elimination of "gluten".
Living Life Gluten-Free
Before adopting a gluten-free (GF) lifestyle, it is important to first understand what gluten is and where it is found.
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What is Gluten?
The term "gluten" is, in a sense, a generic term for the storage proteins that are found in grains. In reality, each type of protein - gliadin in wheat, hordein in barley, secalin in rye, avenin in oats, zein in corn and oryzenin in rice - is slightly different from the others. The "gluten" in wheat, barley, rye, and a much lower amount in oats* (WBRO), contain particular amino acid sequences that are harmful to persons with celiac disease. It is important to note that the gluten found in corn and rice does not cause harm to those with CD. (Note: In order to avoid confusion, the term "gluten" used in this web site refers to only that gluten found in WBRO, not that found in corn and rice.) Refer to Use of the Term "Gluten-Free" to see how this term is used on food labels.
* Current clinical studies indicate that pure oats may be included as part of a gluten-free diet. However, pure, uncontaminated oat sources are not readily available. Therefore, CSA suggests avoiding oats at this time.
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Where is Gluten Found?
While one would expect to find gluten in places like breads, pastas, cookies and other obvious grain products, gluten is also "hidden" in many processed foods such as frozen French fried potatoes, soy sauce and rice cereal. Even many non-food items like cosmetics, and household cleansers contain gluten. Any product that is made with WBRO or any of their derivatives will contain varying amounts of gluten. Refer to the Grains and Flours Glossary for a list of gluten-free and gluten-containing grains.
Beside the fact that WBRO are present in many foods and other non-food items, the clinical gluten-free diet also recommends the elimination of gluten that comes from cross contamination or contact with gluten-containing items. As was mentioned above, it is difficult to find a source of pure oats in the United States at this time. While the oats themselves may not bother a person with CD, the traces of wheat that have contaminated the oats during processing may. Care must be taken during food preparation and storage to insure that cross contamination and contact does not occur.
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Learning to Read Labels
Since the term "gluten" is rarely used on product labels, it is imperative that a person on a gluten-free diet learns the typical places that gluten can hide. (See, also, The CSA Gluten-Free Product Listing for more information and a listing of commercial products that are gluten-free.) Label reading must become a habit in order for the celiac consumer to have the confidence to make informed choices. Refer to Use of the Term "Gluten-Free" to see how this term is used on food labels.
For over 25 years, CSA has worked to require product labeling that is meaningful, verifiable and consistent. Today, CSA continues this effort by working with both the government and the manufacturing industry - informing that having the source of ingredients listed on the label is essential for people with CD. More accurate labeling will provide greater confidence and a wider variety of products for use among the celiac community. Learn more about how CSA is Working to Improve Product Labeling.
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Self-Management
Self-management is vital to living a full life with celiac disease. It means making safe and healthy choices at home and away from home. It means adopting a lifestyle that is free of WBRO. It means taking responsibility for one's own health and well-being. It means living life to the fullest!
Getting Started on the Gluten-Free Diet
The move to gluten-free living brings a number of important changes to life. The return to health and well-being is the greatest among them. The disease can be "controlled" simply by a change in one's diet - no risky surgeries, no life-long dependence on expensive medication. And, best of all, the gluten-free diet is a risk-free diet! Gluten, as a protein, is not essential to the diet and its amino acid components are replaced many times over by other foods. For a person with celiac disease, living gluten-free can only result in improved health and well-being!
It is important when adopting a life-style change to be patient and understanding, both with one's self and with others. Educating loved ones and friends is an important part of treatment. The positive attitudes and understanding of the people closest to the patient make the dietary transition easier.
Gathering information from physicians, dietitians, home economists, and celiac organizations like CSA is essential. This web site is a great resource for diet information, gluten-free recipes, articles for and by people with CD and other material that can aid in this new lifestyle.
There are hundreds of gluten-free foods available that fulfill the definition of the expected clinical diet. Most "regular" recipes can be converted to gluten-free - even Aunt Lydia 's spaghetti and meatballs or Grandma's Thanksgiving pumpkin pies.
For more information on the Gluten-Free Diet see:
* Self-Management
* Basic Diet Choices
* Grains and Flours
* Recipes
* Local Units to find someone near you who can help.
Contact CSA for more information on or to order one or more of the GF cookbooks available at a minimal cost.
The CSA Gluten-Free Product Listing is also a valuable resource to have on hand as the transition is made to shopping "gluten-free." Click here to order this, and other helpful resources.
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Establishing a Support System
Changing long-established habits - for the rest of your life - can seem like a daunting task. It need not be faced alone, however. Membership in an organization like CSA provides information, encouragement, and support that will help the transition go more smoothly. Refer to the Local Units page to find a support group in your area. Working with a dietitian or nutrition professional will also aid in learning to shop, cook and eat gluten-free.
It is important to remember that there is no such thing as a "typical celiac." Not only do the symptoms vary widely, so do the related medical conditions. Diet and treatment needs are unique to each individual. What may work for one may be totally inappropriate and/or damaging for another. The old adage, "What's good for the goose, is good for the gander," does not apply here. All celiacs are alike in that they have an immune reaction to the storage protein in W-BRO, yet; each is very different in dozens of ways which only the individual and his/her medical advisor(s) will know.
Therefore, it is absolutely VITAL that a relationship is established with a gastroenterologist or other physician who is knowledgeable in the diagnosis and care of CD. Partnering with a doctor will help an individual make the most appropriate decisions regarding the GF diet and any supplementation that may be necessary.
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Supplementing the Gluten-Free Diet
Celiac disease prevents the body from absorbing nutrients properly. There are no longer as many functioning "holes in the sieve" for nutrients to get through to the blood stream. Even after the villi in the small intestine are described as being "back to normal," there remains the potential of some nutrients being absorbed at lower levels. Because of this, the monitoring physician may recommend a blood test analysis to learn if selected vitamins or nutrients are being absorbed at adequate levels.
Once a determination is made, supplementation of the GF diet may be advised. This recommendation may include selected intake of iron and folate and, in a few cases, one of the B vitamins. Occasionally there is need for replacement of fluids and electrolytes, including calcium, potassium and magnesium. Both men and women with low bone density may require vitamin D replacement. If there are associated conditions, such as lactose intolerance or diabetes, a series of additional treatment elements may apply.
It is important to remember that the immune system of a person with celiac disease is weak. The auto-immune system functions at a lower-than-normal level. Infections may not be handled as well as in other people. Stamina and resilience may not be at the level they once were. Most vitamins, food supplements and over-the-counter medications are based on and measured for persons at full-functioning, full-absorbing levels. A person with CD may need less or perhaps more of a particular vitamin, mineral or medication. Again, working with a monitoring physician will help determine what and how much is the appropriate allowance of a particular medical or supplemental product.
If symptoms persist after adopting a GF diet, further refinement may be necessary.
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Additional Sensitivities May Be Present
Even after the GF diet is well established, one or more of the original symptoms may persist. If this occurs, it is important to again consult the monitoring physician as there may be additional food sensitivities or other health considerations involved.
Lactose Intolerance
One generally transient condition that is common in those with CD is lactose intolerance. If lactase is not present to facilitate digestion of the milk sugar, lactose, the body reacts with symptoms such as bloating, gas and/or diarrhea. A simple test for lactose intolerance can be administered during a routine physician visit.
Molds
Also common for newly diagnosed CD patients is sensitivity to food and air-borne molds. This is likely to include such common foods as mold-based cheeses, mushrooms, yeast and yeast products and xanthan, which may be used as a binder in some gluten-free breads.
Food Allergies
A lesser number of celiacs report that one or more food allergies also affect them. Approximately 90% of food-based allergies in the U.S. are linked to eight major categories: milk, soy, eggs, fish, Crustacean shellfish, tree nuts, peanuts and wheat. It is important to note that one can have an allergy to wheat and not have celiac disease.
For each of these conditions, appropriate dietary changes and related adjustments will need to be made with the help of the monitoring physician. However, for the majority of celiac patients, the gluten-free diet is the entire treatment.
If symptoms continue to persist after adopting a GF diet and checking for additional sensitivities, further refinement may be necessary.
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Associated Conditions
For the patient who may have had active, untreated celiac disease for a number of months or even years, there may be associated immune-related conditions. There is an established association between CD and insulin-dependent diabetes mellitus and with thyroid disease. Not so common, but occasionally found in patients with CD are hyposplenism, splenic atrophy and selected neurological disorders. It must be emphasized, however, that none of these conditions is specific for CD.
The conditions of osteoporosis and osteopenia (a loss of bone mineral density) are serious complications for persons with CD. Most authors report the incidence to be about ten times higher among celiac patients than is found in the general population. It is likely that about 4 out of 10 celiac patients will need aggressive treatment for low bone mineral density-related problems. While it can be a problem for both men and women, it affects post-menopausal women at a higher level. Diagnosis of this complication can now be made using bone densitometry. Treatment typically includes calcium supplement intake along with estrogen replacement. Any pattern of treatment must be based on individual evaluation and physician recommendation.
A link has also been discovered between untreated CD and enteropathy-associated T-cell lymphoma. This is true also for patients with dermatitis herpetiformis. Studies have shown, however, that the risk of contracting this condition is reduced when the gluten-free diet is strictly maintained. It has also been found that bowel adenocarcinoma may develop when celiac disease is untreated for a long period of time.
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Maximizing One's Health
Be proactive! In order to allow for accurate and timely assessments, the monitoring physician needs to know when health screenings and evaluations are made in the following areas:
* up-to-date flu shots and pneumovax 23, the vaccine for pneumonia
* bone mineral density
* diabetes
* GI malignancies, colon cancer and hemo cell
* Iga levels in patients with recurring infections
* glandular function (thyroid)
* anemia
Summary
Living life on the gluten-free diet may seem like quite an adventure but, the health and well being that will be experienced, will far out-weigh any inconvenience it may cause. Working closely with a knowledgeable physician, and practicing wise self-management skills, will help a person with celiac disease live life to the fullest!
The medical information on this page was last reviewed/updated on January 1, 2004.
Let me know if I can be of any help!!
Amy
Chairperson Louisiana North Shore Celiac Sprue Association Yes, I know; I have it.
If you have it, you'll feel better on the diet, but it's important not to start the diet before you are diagnosed, as you could get false results.
The first step is to have blood tests done, and those will give a reading within a few days, especially if you have been eating gluten.
The next step will be taken if the blood tests show up the celiac antibodies. You will have a painless procedure (and it's only by mouth!) which you probably won't remember, as you'll be heavily sedated. It's a day procedure in a clinic.
If you ask your doctor for a gene test as well as the blood test, you will be able to find out for sure whether you have one or both of the genes for this condition. If you don't have them, you can't get the condition. If you do, but the blood test is negative, you will still have the biopsy, but there's a strong possibility that you either have the condition or will develop it in time.
So, get the tests done as soon as you can, so that you can go gluten free. Whether or not you're celiac, if a GF diet makes you feel better you can make informed choices about it.
For me, I saw improvements in some things immediately (digestion, wellbeing) and others over a few years (bone density, happiness...)
Good luck with your journey! |
