THINKING ABOUT CELIAC DISEASE AS A DIAGNOSIS

Dear Friend,

We understand you are thinking of celiac disease/gluten intolerance as a diagnosis. We hope this letter will give you more information and specifics to research for yourself.

You become a member of our Houston chapter by paying $25 that includes our chapter newsletter and considerable New Member Packet , or $20 just for newsletters. If you need referrals to a doctor in your area, please call and we can try to assist you. We are eager for you to find the right answers.

Celiac/gluten intolerance national and local groups are the best sources for information about the disease and diet. This diet is too much of a challenge for you to try it on your own. You are not alone. Representatives of these groups deal with the gluten-free (GF) diet every day, so they can point you to the tools you need to start your journey to improved health. I am glad you have found our chapter that is part of the national group Celiac Sprue Association/USA, Inc.

The question of testing and doctors is of paramount importance. Most gastroenterologists may see only about three true celiacs in their lifetime practice. Many celiacs have experience with quite a few doctors who cannot seem to find what is wrong with them. They have been diagnosed as having any of a myriad of complaints, including Irritable Bowel Syndrome, or told, "It's all in your head." It is not! Celiac symptoms can easily resemble those of an astounding number of other problems and diseases, mostly digestive diseases, or celiac can actually cause a litany of other diseases. That's why it's often called "The Great Masquerader." Only after finding a rare good doctor who knows something about celiac do patients find for certain they are celiac. A doctor must THINK the possibility of celiac disease before he can diagnose it.

Do not "try out" a gluten-free diet yourself. First of all, you do not yet have enough knowledge at this point to really get rid of all gluten. Secondly, the healing process will start, and the screening and blood test results will be compromised. A first step with a doctor is to ask him to do the "Celiac blood screening antibody panel" (4 tests plus serum IgA) and have the blood sent to a reputable experienced national laboratory. (Ask me for specific referrals.) The Endomysial (EMA) and the new Tissue Transglutaminase (tTg) are more specific and sensitive for CD. However, the "gold standard" of diagnosis is taking multiple (8-20) biopsies of the small intestine with an endoscope instrument, and later good results on a gluten-free diet.

If you need assistance in getting the blood screening tests, call chairman Janet. We can give you details about reliable, experienced national labs.

Both the antibody blood tests and the endoscope procedure should be done WHILE LIBERALLY INGESTING GLUTEN -containing foods. If you have been eating GF for awhile, the biopsy is worthless. It is likely to give a false negative. If you have been GF for awhile, opinions vary on the amount of time you must eat gluten again prior to testing (called a "challenge"); the length of time recommended varies from three weeks to three months. Some say you should be as sick as you were to begin with. So if you are now eating gluten, it is prudent to continue till you have the blood tests and biopsy –– especially since reactions to offending substances are likely to be far more severe after being GF for even a short while. Many celiacs who react too violently to the gluten to ever go back on it for the required time choose to live the celiac life and diet without the benefit of a biopsy.

Some people come to the realization about wheat/gluten problems after an elimination diet. A wheat allergy is different from gluten intolerance, although many of our resources are definitely important for those with wheat allergy.

Some of the many and varied symptoms and reactions that celiacs and others who are intolerant to gluten may manifest are: GI distress including vomiting and chronic foul smelling diarrhea from mild to incredibly harsh; constipation; gas; foul smelling flatulence; abdominal bloating; mental fogginess; rash (Dermatitis Herpetiformis (DH), often on elbows, buttocks, knees and feet); muscle wasting; increased or decreased appetite; loss of weight; bad temper; weakness; fatigue or lack of energy; and malabsorption, and/or anemia to osteoporosis, anemia, smooth tongue with cracks in the corner of the mouth, leg cramps from calcium deficiency, peripheral neuropathy, dental defects, and edema from low blood protein. Most doctors and celiacs believe that if you have DH, you are celiac and should be on a GF diet.

Celiac Disease is a genetic disorder related to all the other autoimmune diseases, for example Dermatitis Herpetiformis, Diabetes type 1, Lupus, Addison’s Disease, Sjogren’s Syndrome, Rheumatoid Arthritis, Myasthenia Gravis, Graves Disease, other thyroid problems, etc. A person could manifest with another autoimmune disease with some typical celiac digestive symptoms, atypical symptoms, or no symptoms. You may not see Celiac Disease back in your family medical history, but you might see another autoimmune disease. Many of these autoimmune diseases are located on the same gene and are closely related. Research has shown that undiagnosed or untreated Celiac Disease can cause the development of another autoimmune disease. Because it’s relatively easy to get a gastroenterologist to do the celiac panel of blood antibody tests, CD should be ruled out (or perhaps confirmed) with IBS (Irritable Bowel Syndrome) symptoms, osteoporosis, and autoimmune diseases.

First, you will find the celiac world is complex, and there is a considerable amount of controversy among celiacs, celiac organizations, and different nations as to what may harm us or cause and what will not; the UK, for instance, says food that has "wheat starch," which is supposed to have the gluten removed from it, is gluten free (GF), although U.S. celiac organizations do not advocate the use of wheat starch. We in the U.S. have zero tolerance for gluten.

GRAINS WE CAN EAT: Generally celiacs do well with rice, corn, potato, beans, sorghum, soy, flax, Montina, quinoa, cassava/manoic (from yucca plant) and any flours derived from these grains. We have many great cookbooks that use a combination of these flours, plus some xanthan gum (from corn) that acts as a kind of binding agent in baked goods. Our New Member Packet lists many gluten-free, wheat-free cookbooks and resources.

GRAINS THAT CONTAIN GLUTEN in order of the amount of gluten in them: Wheat, barley, rye, and oats are the main offenders, followed by spelt (or spelta), triticale, and kawmut (or kamut). No celiac or gluten intolerant person can eat any of these grains, ever, the rest of his/her life. People with wheat allergy should also not eat spelt; spelt is a form of wheat. There is still some controversy as to oats, but until further clarified with good scientific research, we do not eat oats. Also, there seems to be no pure source of oats that is not contaminated. No national celiac organization is recommending the use of oats at this time.

GRAINS THAT MAY NOT CONTAIN GLUTEN: Millet, teff, ragi, buckwheat (kasha), and amaranth do not inherently contain gluten. Many celiacs are able to eat some or all of these with no problem, but others may react to some of them due to such reasons as individual sensitivities or cross contamination. It might be good advice to avoid all of these grains until you are stabilized, and then perhaps try one at a time to see if you react –– remembering that some will react within an hour or two, but some rare celiacs may not react for as much as three days after ingesting an offending substance. Furthermore, some celiacs may not react at all after ingesting gluten, but it's doubly important for them to check out everything before they ingest it because any gluten still probably does some damage to their intestines.

There is also some undue controversy over what vinegars are GF and which are not, but if you follow this simple guideline you will be safe till you form your own opinion. "Pure" apple cider, wine, and rice wine vinegars are safe. The single word "vinegar" on labels must denote an apple source. It now seems that the distillation process does not allow any gliadin to get through into the distillate. You may have an individual sensitivity to vinegars. Newly-diagnosed celiacs & DH’ers should avoid ANYTHING questionable in this early stage.

Any individual celiac or anyone who is sensitive to gluten whether diagnosed or not, due to personal sensitivities may also react to other foods such as corn, cooked tomatoes, or even rice, so you must keep close track of what you have eaten before each reaction. It's a good idea to keep a food diary at first, listing everything you eat with brand names until you get a solid idea of what may be toxic to you. This is doubly important for those who have celiac children.

Also, many celiacs are lactose intolerant because the villi in the small intestine (which are damaged and flattened by gluten) are the site of lactase production -- specifically the tips of the villi which may be damaged first. Without this lactase we are unable to digest lactose. In this case some celiacs may be lactose intolerant, but sometimes this intolerance may disappear slowly after the small intestine has time to repair and is in good shape again. In bad cases this may take as long as two years, or not at all. The problem here is that the villi may lose their ability to produce lactase after not doing so for two years. So it might cause a little discomfort for awhile to reintroduce milk. The good news is that ingesting lactose will not damage the villi. Also, if you are lactose intolerant, getting some inadvertent lactose may cause digestive symptoms similar to ingesting gluten, and you won’t be able to tell what exactly is the problem. We suggest using few milk products for 2-6 months until you have the gluten-free diet under control.

Many who are just lactose intolerant may be able to drink Lactaid 100, which is real milk with all the lactose removed. (But check out the Lactaid pills for gluten.) But some may also be sensitive to the protein or casein in milk. In this case they may want to drink soy or rice milk, if they are not sensitive to that too. Two brands that are decent tasting and offer everything in their line of milk substitutes as (GF) are: Pacific (all rice and all soy milk substitutes) and Better Than Milk (all soy milk substitutes).

Celiacs must also be aware that they have often damaged their intestines so much that molecules of some substances can "leak" through the walls. This may cause sensitivities to other foods as well. So it's imperative to keep the intestine healthy as soon as possible to avoid this. Because of this "leaky gut," celiacs may come to be sensitive, allergic or intolerant to almost any food.

Here are some Internet sites we have found helpful. Keep in mind that not all celiacs nor all celiac organizations, nor all countries agree on everything:

• Do read and print out Dr. David A Nelson, Jr. M.D. article, "Gluten-Sensitive Enteropathy (Celiac Disase): More Common Than You Think" at www.aafp.org/afp/2002/215/2259.htm This article updates an article by Dr. Harold Pruessner written in 1998 in the same journal, "Detecting Celiac Disease in Your Patients." It is still available at www.aafp.org/afp/98030/ap/pruessn.html

These articles are good to copy and send to your own doctors, especially your internist or family doctor who might not be as familiar with CD and should be the first line of defense for patients. We want doctors to THINK CELIAC DISEASE toward the top of the list of possibilities rather than the last, as it used to be.

• Also print out Dr. Joseph Murray’s (of the Mayo Clinic) article at www.ajcn.org/cgi/content/full/69/3/354?.(If this does not work, search on J. Murray, Celiac Disease, or title, "The Widening Spectrum of Celiac Disease.")

www.niddk.nih.gov/health/digest/pubs/celiac/index.htm National Digestives Diseases Clearinghouse

http://archinte.ama-assn.org/issues/v163n3/rfull/ioi20641.html "Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States” (Feb. 2003): Alessio Fasano, MD; Irene Berti, MD; Tania Gerarduzzi, et al.,University of Maryland, Center for Celiac Research article.

• Web site for the Celiac ListServ:
http://www.enabling.org/ia/celiac/basic.html#index.
In addition to the discussion group, the peripheral extensive files about many issues are extremely valuable.

http://csaceliacs.org/ This is the Celiac Sprue Association/USA’s web site. Celiacs need to order the CSA Gluten-Free Product Listing ($30). This compilation that lists a lot of brand names of GF products is a great help at first. Every product list is not all accurate after publication because manufacturers can change formulations at any time. It would be best to check out products individually , but it's a good place to start from, rather than starting blind with no idea as to what may or may not be GF. Contact CSA at P.O. Box 31700, Omaha, NE 68131-0700.

• Scott Adams also offers a lot of valuable information about celiac at this site: http://www.celiac.com/

"Celiac Disease: A Guide Through the Medicine Cabinet" is available from Marcia Milazzo (her late husband was former owner of Stokes Pharmacy). Findings are based entirely on information received directly from the manufacturers. Price: $39.00 each plus $6.00 shipping. Send your check for the full amount to Marcia Milazzo, P.O. Box 1306, Medford, NJ 08055. This resource is also available through CSA/USA, Inc. See http://www.csaceliacs.org/ .

Remember that having mostly respiratory symptoms may indicate an allergy, rather than an intolerance. More immediate symptoms resulting from an allergen indicate an allergy. However, many celiacs tend to have multiple food sensitivities. We do want to help you with choosing acceptable resources if you find the final diagnosis is a food allergy problem, rather than gluten intolerance.

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Updated 8May03