Misdiagnosed Celiac Disease; What A Pain!

Celiac Disease, Coeliac Disease, Celiac Sprue, Gluten Intolerance; they all mean the same thing; Eat wheat, barley, or rye and you will get sick!
About 1% (1 out of every 100 people) of the U.S. population has Celiac Disease and about 97% of them don’t know they have it! Ten years ago, Celiac was thought to only affect about 1 in every 2,000 people. With more awareness and testing, more people in the U.S. are being diagnosed.


Do you have symptoms and/or a diagnosis that you are not satisfied with? Read on:
(I am not a doctor and have only acquired this information through internet research and my own experiences; So, consult your doctor!, do your own research, question authority and feel better soon!)

If you have Celiac Disease and you eat gluten, which is in Wheat, Barley, Rye and sometimes Oats, your body over-reacts creating an auto-immune response. Normally, the Villi in the small intestine stand straight up, collecting nutrients from the food that you eat. If you have Celiac, and eat gluten, they lie down and don’t do their job so you are not getting the nutrients that your body needs. Your body is not getting the carbohydrates, proteins, fats, vitamins and minerals that it needs. You can develop Celiac at any age! People who have Celiac Disease and are still eating food with gluten in them can have many different SYMPTOMS including:

Diarrhea and/or Constipation, Abdominal Pain, Gas, Fever and/or Night Sweats, Mouth Ulcers (canker sores), Irritability, Excessive Tiredness, Weight Loss or Weight Gain, Anemia, Aching Bones, Legs or Arms, Swollen Ankles, Back Aches, Poor Balance, Muscle Cramps, Numbness and/or Tingling, Easy Bruising, Infertility or Miscarriages, Low Birth-Weight in infants, No Periods, swollen glands (or lumps under the skin anywhere), Anxiety, Sleeping Difficulties, Headaches or Migraines, Dental Enamel Defects, Itchy Skin, Dizziness, Feeling “Out of it.” Or in a “Brain Fog”, Appearing “Pale”, Vomiting or Nausea, Reflux, or getting every cold or illness that you come in contact with. You can have any number of combinations of symptoms because this is the result of not getting the nutrients that your body needs. If you continue to eat gluten and you do have Celiac Disease, the symptoms will likely increase in number and/or severity.

Some people who have Celiac develop a rash or acne around their mouth, or on their legs, buttocks, knees or elbows or anywhere else. If you have this Dermatitis you may still have Celiac with or without having damage to your intestinal lining.


In children, symptoms may include: failure to thrive and grow, Short Stature,
Delayed Puberty, or Muscle Wasting (especially in the buttocks), Weight Loss, Distended belly (pot belly), Diarrhea, Fat in the Stools (makes the stool float), Passing Gas, Pain, or any of the above adult symptoms.

Celiac Disease is very frequently misdiagnosed as a different disorder such as Irritable Bowel Syndrome (IBS), Lupus, Chronic Fatigue Syndrome and a variety of other ailments. Continuing to eat a diet that includes gluten may also cause you to develop other autoimmune diseases such as Arthritis or Thyroid Disease.


Celiac is one of the most common inherited genetic diseases in America. It seems strange writing this as until recently it was considered rare which is probably why it was not diagnosed frequently. The U.S. is now catching up to other developed countries in its knowledge about Celiac. It is now recommended that anyone who has a 1st degree relative with Celiac disease, also get tested because you have a one in twenty chance of having Celiac. (All babies in Italy are tested for Celiac and they have a lower rate of occurence than the U.S.)

You also have a higher risk of having Celiac Disease and may want to get tested for it if you have any other Autoimmune Diseases, Neurological conditions or these specific problems of: Thyroid Disease, Addison’s Disease, Cystic Fibrosis, Multiple Sclerosis, Schizophrenia, Fibromyalgia, Chronic Fatigue, Active Hepatitis, Myasthenia Graves, Ulcerative Colitis, Osteoperosis, Active Hepatitis, Lupus, Primary Biliary Cirrhosis, Raynaud’s Disease, Depression, Anxiety, ADHD, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome (dryness in your mouth and eyes), Epilepsy, Asthma or Diabetes Some people with Autism, Asthma and other issues say that their symptoms are improved by being on a gluten free diet. Some people that are diagnosed with Celiac find that they can not at first eat or drink foods with lactose in them but as they continue the gluten-free diet their lactose intolerance goes away. Wheat is not fully digested by anyone and you may find that you feel better being on a gluten free diet even if you do not have Celiac Disease.

Doctors recommend that you get tested for Celiac Disease before you eliminate gluten from your diet. The first test is a blood test. If your blood test comes back positive (saying that you have Celiac) your doctor will probably ask you to get a biopsy test of your small intestine to check for damage to the Villi. That is why it is important to keep eating gluten as you actually want there to be damage at the time of the test. There is also a DNA test that checks if you have the marker that indicates that it is possible for you to develop Celiac Disease. (40% of Americans have this marker.)

None of these Tests, including the genetic marker, are 100% accurate. Some doctors may like the tests as they think that they can rule out celiac disease as the problem if your tests come back negative but many people come back with a negative result to later find that they have gluten intolerance. Some pediatrician's don't recommend the testing as the results are frequently inaccurate. If you are having symptoms it is worth it to go on the gluten free diet. If you start feeling better, which may take a few months, then continue. It is also important to make sure that you are really eating an all gluten free diet. Some natural foods stores offer classes or you can see a specialist in the celiac diet or just make sure to research foods to avoid and be very careful about what you buy at the grocery store and what you order at restaurants.

Even if your tests indicate that you don’t have Celiac, you may have it. You can have a false-positive result to the tests or a false-negative so really the only way to know is to eliminate gluten. The tests are not completely accurate. If you are completely gluten-free for a few weeks or months, you should start feeling a little better. It may take 1 or 2 years for your villi to completely heal depending on the damage that has been done. Some people with gluten intolerance have lactose intolerance as well until there villi completely heals and then they may be able to eat milk products again. A gluten free diet may be difficult at first to follow strictly but it is worth it to try as if this is your issue, you will soon be feeling better. You need to completely eliminate all gluten from your diet. A nutritionist may be able to help.

Gluten is in Wheat (includes white flour which is actually wheat that is stripped of its nutrients), Rye, and Barley. Oats are controversial as whether or not people with Celiac need to avoid them. If you are just starting this diet, I would recommend avoiding Oats too, at least to start. Processed foods such as canned, packaged or frozen foods often use gluten as a thickener or binder and don’t usually use the word “GLUTEN” in their ingredients.

Some ingredients to AVOID are: Malt, Hydrolyzed Vegetable or Plant Proteins, Textured Vegetable Proteins, Natural Flavors (Artificial flavors are o.k., counterintuitive isn't it?; I even typed it wrong the first time.), Mono & Diglycerides, MSG or monosodium glutamate there is controversy over whether it is gluten free or not; it is a preservative and can cause other reactions in people so I would avoid it anyway, Grain Vinegars, Grain Alcohol, Udon (is either corn or wheat), modified food starch, edible starch, or food starch (although, just the word, “Starch” in a U.S. food product must be derived from corn), Matza, Caramel Color is probably gluten free if it is a U.S. product, Graham, Seitan, Semolina, Spelt, Triticale, Wheat grass, Wheat Berry, Wheat Germ, Wheat Starch, Wheat Nut, or Wheat Gluten.

Maltodextrin must be made from potato if it is a product made in the U.S. Caramel Coloring is probably corn if it is a product made in the U.S. Whey is the remains of the cheese making process and is gluten free. All Vanilla is gluten free but you will find "Gluten Free Vanilla" still as there used to be controversy over whether vanilla was gluten free or not. There still seems to be controversy over whether blue cheeses are gluten free as they are created off a bread mold but the blue cheese makers claim that the amount of gluten if there is any remaining would be so microscopic it could not bother anyone. I have eaten blue cheese after reading about this and found no reaction and my body reacts from even the smallest amount of gluten if I accidentally eat it.

Some binders, and fillers in processed food and vitamins and medicines contain gluten. Also, glue used for envelopes and stamps is often made with gluten; get the self stick ones.

If you are not sure if it is gluten free, don't eat it until you call the company and ask or find information about the product's ingredients by googling the product name and then "gluten free".

Health food stores or the health food section of a supermarket offer gluten free foods. Trader Joes supermarket has a lot of gluten free foods, offers a list of their gluten free foods and puts a little g on a lot of their foods that are gluten free. There food is also delicious and not as expensive as some other supermarkets. Even the frozen veggies are yummy!

You may find yourself eating more healthy foods on a gluten free diet as you will be avoiding most processed foods but you can still make your own sauces or buy gluten free ones (including soy sauce), eat any types of Vegetables, Fruits, Meats, Beans, Potatoes (but check ingredients of French fries from the supermarket and fast food and ask if the fast food restaurant fries any other products in the same oil as the French fries.), Rice and many Ancient Grains (Quinoa, Millet, Amaranth and others). Some other flours to consider cooking with or using as thickening agents in gravy are: Buckwheat (it isn’t wheat!), Gram flour that is made with chickpeas (but Graham crackers are not gluten free), Cassava (also called Tapioca,Yuca or Manioc), Chickpea flour, and Corn starch. Glutinous rice and Glutinous rice flour are gluten free as the glutin part of the word refers to its being sticky.

You can buy whole grain rice pasta (Tinkyada makes some that tastes like regular white pasta!) and get more fiber in your diet. The whole grain pasta is more expensive than regular pasta but at least you are getting more nutrition for your money. You can still drink soda if you like and there are even some candy products that are gluten free. There are cookbooks and online recipes for baking products.


A few restaurants have gluten free menus now but for the ones that don’t just ask what is in the sauces. Some restaurants use a lot of processed food, which is not usually gluten free; you may be able to check on line for ingredients before deciding on a chain restaurant. Bertucci's, is a surprisingly great restaurant for people with gluten intolerance as they will make you any dish (aside from the pizza) and will substitute vegetables for the pasta.

This may sound like a lot of work at first but it is worth it to know that you are not increasing your chances of developing other autoimmune disease from continuing to eat gluten and to feel healthy again!

Google "Clan Thompson Celiac Site" Great site with a lot of info.
another good site is www.foodintol.com/celiac.asp
or you can check out www.enterolab.com which does stool testing ( I do not know anything about this company nor do I know anyone who has had this test but they do have an informative site about celiac disease.)

MissAreWeThereYetAndHerArchNemesisGForce

I recently went to a car safety check with the state police and while I was told that I had installed my daughter's car seat correctly, the officer said that everything in the backseat had to go. I had toys, books, juice boxes, an umbrella, etc. and had frequently brought groceries home in the back seat of my very small car. I questioned the officer about why I would have to remove the books as they were in a fabric box which was secured with a seat belt. So, I am questioning him with "a paper back book? I can't keep the paper back books?" His reply: "G-force". He did say that a stuffed animal is fine as he threw my daughter's stuffed monkey at me and asked if it hurt. We also have a large selection of recorded songs and stories. Driving is always a great time to sing or have a great conversation (even if you end up asking a lot of questions or talking more than your child) or discussing what you see outside.


My husband and I decided to take our chances with the paperback books in the car and remove everything else. This is some information about G-force so you can make your own decision. I had forgotten that at the car safety class that we had attended before my daughter had been born, they had told us not to have any potential projectiles in the car.


http://www.aaanewsroom.net/Main/Default.asp?CategoryID=7&ArticleID=640
This is a AAA article that states that if you are driving only 30 miles an hour with a 10 pound laptop, the force of its hitting you will feel like it weighs 300 pounds.


http://www.e-z.net/~ts/physics.htm
This is an article that says that Sir Isaac Newton's 1st law of motion states that an object in motion tends to stay in motion. (So if you are traveling 60 miles an hour and suddenly have an accident that stops your car, you will stop but everything that is not tied down in your car will keep going and potentially hit you or your child.

Newton's 2nd law of motion is (in real people language): Force = Mass multiplied by acceleration. So the force of the item hitting you will not be what it really weighs (say 5 pounds) but will be its weight multiplied by the speed that you are going (say 30 miles an hour) (5 pound object times 30 miles an hour will feel like 150 pounds hitting you.)
So even if you are just traveling back from the grocery store with your can of Eden brand beans (because every other can and some plastics have the dreaded Bisephonol (BPA) chemical in them) and you are driving 35 miles an hour with your 1 pound can of beans it is still going to have the force of a 35 pound object if you happen to get hit or hit someone else. Yikes!
http://organicgrace.com/node/316 (Article about the dangers of BPA)

Makes you see why when adults don't where there seat belt and end up flying through the window they almost always die: 150 pound adult times 50 miles an hour equals 7,500 pounds of force on the body when the adult hits the ground.

Science, hmmm, interesting.

Take B 12 and your Folic Acid

If you are pregnant or thinking about becoming pregnant, you probably know that you should be taking folic acid daily. U.S. researchers, who studied pregnant women in Ireland, now believe that not getting enough vitamin B12 can have the same effects as not getting enough Folic Acid.

A lack of either vitamin increases the risk of neural tube defects (NTDs) including Spina Bifida (Causes partial paralysis in the baby) and Anecephaly (Baby is born with a severely underdeveloped brain and skull and is either still born or dies soon after birth).

These birth defects occur in the first few weeks of pregnancy. The U.S. Public Health Service recommends that all women of child bearing age consume 400 micrograms (mcg) of Folic Acid daily. This is the 100% daily value (DV) that is generally in a multi-vitamin. Vitamin B12 is, as well, usually found in a mulit-vitamin with a DV of 6 mcg. If you have epilepsy, stomach or intestinal problems or if you are a vegetarian, the researchers recommend checking your vitamin B 12 levels before you are pregnant to make sure they are not low.

If you are planning to get pregnant, check with your doctor to see if she recommends a higher dose. It is important to be taking this vitamin daily for at least a month before pregnancy to ensure an adequate level. NTDs occur before the 29th day after conception and your levels need to be adequate before and during this time. You might not even know that you are pregnant at this early stage, so make sure to take that vitamin daily.

The dosage of folic acid is usually upped to 600 or 800 mcg when you are pregnant, even higher levels are usually recommended for women with a family history of NTDs;
Check with your doctor.