Abigail's Home Page - Is it FMS, CFS, or Celiac Disease

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Is it FMS, CFS, or Celiac Disease?

Hi. My name is Abigail, and I live in St Paul, Minnesota. I believe I have Celiac Disease although for 5 years my doctor thought I had Fibromyalgia. Please read about my 20 year struggle to find the correct diagnosis. I have found that FMS, CFS, and Celiac Disease have many similar symptoms. You can read about my diagnosis and these symptoms in my Diagnosis Page.

Here is a Celiac Poll page which I created on 12/9/98. I hope to ask celiacs about their lifestyles, their symptoms, etc.

The reason that Celiac Disease was overlooked all these years, is because of the misbelief by American doctors that the disease only occurs in 1 in every 3000 people. A recent article in the New England Journal of Medicine called The Many Faces of Celiac Disease states that studies have shown that the ratio for Celiac Disease in people of European descent is 1 in 300. Even more recent studies being done by the University of Maryland show that 1 in 150 people have celiac. Unfortunately, few doctors are aware of this updated ratio. They believe that the disease is extremely rare, which is why it is often overlooked as a possible diagnosis, especially if there has been no severe weightloss.

Because my doctor thought that only 1 in 3000 people could have this disease, he assumed I must not have it. I finally had to file an HMO appeal of diagnosis to have my biopsy slides reviewed by a specialist, since they did show abnormalities. My slides were sent to Mayo clinic in mid-February, and I am currently waiting for the results. Since filing the appeal, I have discovered that a few of my symptoms started returning after I started adding milk and soy to my diet. I have since gone milk free and soy free in addition to gluten free. Gluten, Milk, and Soy are the three foods which can flatten villi if you are intolerant to them and also have Celiac Disease. Here is a list of the primary causes of flatten villi.

If you would like to read more on-line material on Celiac Disease on the web, Don Wiss has an excellent site with links to all sorts of Celiac related homepages and other Celiac related websites. His site is called The Gluten-Free Page: Celiac Disease/Gluten Intolerance Web Sites.

I am now a webmaster for a Delphi Forum called Celiac Disease On-Line Support Group. We not only have a forum, but a chat site as well. The site is free, you must register, and the Celiac chat room is available 24 hours a day. Anyone can meet in the chat room to discuss Celiac and related issues. There is no special software required. The system uses html if you don't have Java script. So it is easy to use. Please stop by, or coordinate a time to meet with your Celiac friends. You can also reach the forum by clicking here. If you wish to contact me, please post a message in the forum to: Celiacabbie - that is me.

If you are interested in learning to cook and bake gluten free, I recommend the following reading material by Bette Hagman (Copies are available through Barnes and Noble - use the Search Engine below):

  • More from the Gluten-Free Gourmet: Delicious Dining without Wheat
  • The Gluten Free Gourmet: Living Well without Wheat
  • The Gluten-Free Gourmet Cooks Fast and Healthy: Wheat-Free with Less Fuss and Fat
  • The Gluten-Free Gourmet Cooks Fast and Healthy: Wheat-Free and Gluten-Free with No Fuss and Less Fat
  • Gluten-Free Gourmet Bakes the Staff of Life
  • Search by:

    SmarterKids.com Homepage

    Our support group recently started compiling a Celiac Disease On-Line Support Group Gluten Free Food List. Please feel free to print off a copy. I will update this list on an on-going basis as additional products or corrections are brought to our attention. Watch the forum for warnings on products added to the list in error. I asked the Celiac Disease On-Line Support Group members to provide me a list of the gluten free products which they currently use in their household. From these submissions, I have created a webpage of gluten free products. *Use this list with caution. This does NOT guarantee something is gluten free. This is a guide for calling and verifying that products are still gluten free. Products frequently change ingredients, so verification is important. If you find a product which is NOT gluten free, please post a correction on my message board immediately in order for me to make corrections to this page. The link to the message board is located on my index page.

    I am currently on an email list for people with Celiac Disease or have an interest in it. This has been very helpful. I am currently receiving a digest of the daily messages everyday. To subscribe to this list or to learn more about the list, view this link called Celiac/Coeliac, Dermatitis Herpetiformis (DH), Wheat/Gluten-Free. This email list now has over 2500 recipients. Because of the large volume of mail that is posted, there are certain rules which the list owners ask you to follow when considering posting questions or comments to the list. Please read this Celiac Owners Announcement on their posting rules before you make your first post to the list. For your convenience, I have created a webpage which lists the most common Listserv Commands used on the Celiac List and on the No-Milk List, such describes how to subscribe, how to start mail, stop mail, retrieve files, and how to retrieve mail in weekly digests if you have been on "No-Mail" for a while.

    Copies of Large Important Celiac Listserv files:
    The Celiac FAQ
    Maximum Tolerable Level of Gluten
    Grain Toxicity

    Safe and Forbidden Food Lists (for the gluten free diet) are available at the Celiac Support Page (Copyright (c) 1995, 1996, 1997 Scott Adams - All rights reserved worldwide). Please note that Dextrose and Citric Acid need to be added to the forbidden list if they are derived from Wheat rather than Corn. Scott Adams' homepage is located at http://www.celiac.com is packed with helpful information about Celiac Disease. If it wasn't for Scott, I would never have found out about Celiac Disease. His homepage guided me in the right the direction when the doctors and nurses at my HMO were just nay sayers. Thanks Scott!

    If you have questions on what grains you can eat, I have posted a copy of a Celiac Listserv file which I requested in January 1998 called Grain Toxicity.

    For those of you looking for gluten free chocolate, check out the Chocolate Emporium Passover Specials. Beginning around March 20th and into mid-April they carry Passover chocolates and Passover hard candies. These chocolates and candies contain no wheat, no barley, no oats, no rye, no milk, no soy, and no corn which are not allowed during Passover. Their phone number is 1-888-CHOCLAT, and they accept credit cards and will ship your orders to you.

    For those of you that are looking for gluten free alcoholic beverages, Bill Kane from the Celiac List has created a page called Welcome to the Celiac Sprue Safe Alcohol List which lists some alcoholic beverage options for people with gluten intolerance.

    I am very sensitive to gluten and react to minute amounts. So I am happy that I finally found a company which sells truly gluten free vitamins. Here is the Freeda Vitamins website. I have been very happy with them. I am extremely sensitive to minute amounts of gluten and have never had a gluten reaction from them. The Gluten Free Mall has some information on Freeda Vitamins as well. Celiacs receive a 20% discount if they order vitamins through the Gluten Free Mall - Freeda Vitamin Page. There is also a Vitamin Update website that explains what vitamins do, and what foods they are in. They also provide updates on new research regarding vitamins and health issues.

    There is a business called Stokes Medical Arts Pharmacy, Inc which does custom compounding of medications so that they do not contain foods which you have intolerances to. They work together with you and your doctor to provide you with medications, both prescription and non-prescription, which do not contain such intolerants. Ask for William J. Milazzo, Registered Pharmacist (R.Ph.); he is extremely helpful. They work with many Celiac patients. They can be reached by calling 1-800-754-5222 or by faxing to 1-800-440-5899. They are located at 639 Stokes Rd, Medford, NJ, 08055.

    In Bloomington Minnesota is another company which does custom compounding. They, like Stokes, are associated with the Professional Compound Center of America (PCCA) which is a supplier of pharmaceutical ingredients and also acts as a compounding consulting firm. The name of this Minnesota pharmacy is Bloomington Drug. It is located at 509 W 98th St, Bloomington, MN, 55420. The phone number is 612-884-7528. The owner's name is Paul Schaffer. If he is unavailable, you may speak to Phil Schliem. Phil was very helpful when I called. Bloomington Drug has a contract for doing custom compounding with two HMO plans in Minnesota: HealthPartners and Medica. You must get such prescriptions approved by the HMO and have your doctor submit your prescription with a list of your allergies and intolerances to the pharmacy. If your prescription is approved by your HMO, you pay only your co-payment; otherwise, you must pay for the entire prescription. If you wished to have it shipped, the fee is $2. I recommend that you call the pharmacy and confirm your allergy/intolerance information before the prescription is filled. You may charge your prescription on a credit card. It took two months, but my HMO, HealthPartners, finally approved my custom compounding of my Hormone Replacement Therapy using Bloomington Drug.

    For quite sometime I was milk intolerant and joined an email list for people with a milk allergy or milk intolerance. To subscribe to this list or to learn more about the list, view this link called Information about the NO-MILK Mailing list. There is also an excellent website with a list of milk free products at Steve Carper's Lactose Intolerance Clearhousing. He specifies which products contain casein for those of us with casein intolerance. Don Wiss has an excellent webpage called The No Milk Page with links and information for those who cannot have milk. I had difficulty finding a milk substitute that didn't have gluten or soy in it. I was using Rice Dream until I found out that the rice they used is milled with barley---it is NOT gf. Then I found out about DariFree which is made by A.N.A. Amazing Foods. DariFree milk substitute is gf, dairy free, soy free, and corn free. It is made primarily from potatoes and tastes very good. You can purchase it at some health food stores, but it is also available through direct mail order by calling Abersold Foods at 1-800-275-1437. They sell it in packets and in bulk. Also I have used Westsoy Plus Vanilla. It is just excellent. Make sure you get the exact product. The ones that come in blue contains have gluten. The white ones do not.

    A common complaint of Celiacs is that they suffer from extreme dryness of the lips, mouth, throat, and eyes. No one is quite sure what causes this dryness. Through trial and error, I discovered a personal cure for this dryness. I removed potatoes from my diet and added addtional calcium. Voila, no more dry mucous membrane! Potatoes and a calcium deficiency were causing my lips to hurt, peel, crack, and bleed. Celiacs tend to have diets high in potatoes... maybe that is why we all suffer from dry mucous membranes. Who knows? Now I consume at least 1200 mg of calcium per day. It really helped me to switch my milk substitute from DariFree to Westbrae Natural Rice Beverage, Vanilla (gf) which is calcium and vitamin D enriched and potato free. Since making these changes, my mucous membranes have gone back to normal. I no longer need to use lip moisturizer at all. My lips don't peel or hurt; I no longer have trouble swallowing pills due to dry mucous membrane in the throat; and my eyes no longer feel dry whatsoever. This has really worked for me! Give it a try. It might just work for you too! (Recently I tried adding oranges to my diet... they also caused painful lips and peeling... so I am no longer eating them either.)

    For those of you suffering from Restless Leg Syndrome, there is a wonderful website dedicated to providing information on this condition. The website is maintained by the Southern California Restless Legs Syndrome Support Group. Ingesting milk products greatly aggravates RLS, so if you have are having trouble with tingling in your legs and feet, or have severe pain in your feet in the morning which you have to "walk off," you may want to consider trying a milk free diet to see if it reduces your symptoms. Also consider that most prescribed medications contain lactose, so find versions without lactose or with reduced amounts of lactose. My personal observation is that anything with any milk by-product has aggravated my RLS. So I am doing what I can to find medications without any milk in them if at all possible.

    For those of you that you like to read information on Fibromyalgia, which has a number of similar symptoms to Celiac Disease, there is a wonderful website with links to articles written by Devin Starlanyl, MD. Her articles are extremely informative. Dr. Starlanyl also has her own website.

    In November 2000 I was diagnosed with yet another condition: Hashimoto's Disease. This is an autoimmune disease in which the body attacks the thyroid and prevents it from producing enough thyroid hormones. That means that I am also hypothyroid. In addition, my endocrinologist told me I have a thyroid cyst that she is going to watch. I started taking 90 mg Armour Thyroid daily. This is gluten free and milk free. It is made by Forrest Pharmaceuticals. I can't tell you how much better I feel! Even my gluten reactions are not so horrible. The depression is gone...the hopeless is gone.... I feel so much better! My internist insisted that nothing was wrong when I asked to have my thyroid checked. The T4 was normal. The T3 was very high, above normal. My TSH was normal. But I insisted on seeing the Endo and she was wonderful. She knew that people on a gluten free diet don't get thyroid antibodies that show up in people with Hashimotos. Based on my symptoms, my other autoimmune disease, etc... and my high levels of T3, she determined that my T3 was making up for not enough T4... and once I started on the thyroid meds I improved immediately. I felt, calm, centered.... whole..... at peace and not depressed. I just want people to know how important it is to be screened by an endocrinologist and not just an internist. The specialists know much more and find things that others can't. I am a new woman!

    Favorite Links on the Web

    Article by Carol E. Semrad, M.D.
    Celiac Frequently Asked Questions (FAQ)
    Celiac/Coeliac, Dermatitis Herpetiformis (DH), Wheat/Gluten-Free
    Archives of CELIAC@MAELSTROM.STJOHNS.EDU
    Talk call "The Widening Spectrum of Celiac Disease" by Joseph Murray MD, PHD
    1999 Article called "The Widening Spectrum of Celiac Disease" by Joseph Murray MD, PHD
    Celiac Disease On-Line Support Group (Message Board and Chat Room)
    Eating Without Casein (Milk Protein)
    Archives of NO-MILK@MAELSTROM.STJOHNS.EDU
    National Institute of Diabetes and Digestive Diseases and Kidney Diseases--On Celiac

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    Copyright by Abigail Bergeron, March 1998

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