Seek These Things

a blog discussing Celiac Disease, & the Gluten Free Diet, Books, Parenting, Politics, Religion, Pets, Product Reviews, and whatever else catches my interest

This Post is for Frankie May 24, 2009

Dear Frankie,

Thank you so much for your comment. I was beginning to think that only the spammers read my blog.

Living Gluten Free can be discouraging, but I hope you can take comfort from the experience of others.  Did you know 1 in 150 children are diagnosed with Autism? Well 1 in 133 people in the general population will develop Celiac Disease and I feel overall they are unaware of the warning sign, the treatments that are available, and the negative impact continued gluten exposure can have on someone with Celiac Disease or Gluten Intolerance.

Two ingredients you need to buy for your GF food storage are Brown Rice Flour and Guar Gum. You can get both at any Health Food Store. (Like Good Earth Natural Foods.) You can mix Brown Rice Flour and Corn Starch in a 3:1 ratio and replace the flour in any family recipe. It won’t be as good as traditional recipes or the GF recipes, which often use a “featherlight mixture” of rice flour, potato flour, and potato starch, but it will get you through those times you need some homemade comfort food. Rice flour is heaver than wheat flour, Xanthan Gum (and Guar Gum which is similar to Xanthan Gum and less expensive) act as rising agents to make your breads lighter in texture.

I understand that your diagnosis is still up in the air, even specialists disagree on how much blunting of the villi constitutes a diagnosis of Celiac Disease (for more information read Gluten Free for Dummies). Lactose Intolerance is very common among those first diagnosed with Celiac Disease starting out on the Gluten Free Diet. You need lactace to digest lactose and the part of your body that makes lactace is located on the tip of your villi. When your villi become blunted due to your auto-immune response attacking the gluten in your system, your body may be unable to produce lactace and you will be lactose intolerant. However, many people living on the gluten free diet have reported that their lactose intolerance disappears as their villi heal. You could be able to stomach lactose within a year following the GF diet.

I am also lactose intolerant. I began experiencing symptoms of lactose intolerance after my gallbladder was removed in 2008. It is challenging to make Gluten Free meals for my husband and Milk Free meals for me. Each of us longs for the food the other is eating. I’ll add more GF/CF recipes ad I become more adept at cooking without butter and cheese.

CF stands for Casein Free and means the recipe does not contain that milk protein. Some people sensitive to Gluten are also sensitive to Casein, one of the many protiens found in milk.  Look for GF/CF recipes and you should be fine. I also encourage you to test your level of lactose intolerance, you might be able to stomach a certain amount of lactose in your diet, and only experience symptoms when you go over that limit. I have found I can eat lactose about once a week, but never 2 days in a row. Unlike cheating on a gluten free diet, where every exposure to gluten increases your risk of developing colon cancer, lactose intolerance has not been linked to cancer.

You mentioned that the list of foods you cannot eat keeps getting longer. That is the opposite of the reaction I hear from most people on the GF diet. Once their CD was diagnosed and they began treatment, their other medical conditions (diabetes, depression, food allergies- like to strawberries, and lactose intolerance) improved considerably or went away entirely eventually.

Regarding your sensitivity to beef and chicken, is it possible your food is being cross contaminated? The longer you are Gluten Free correlates to how strongly you will react to gluten when it gets into your system.

Additionally, some people are more sensitive to gluten than others. My father works with a man whose 3 children all have CD. One of his daughters is so sensitive to gluten that she cannot eat off of any plate or fork that has ever touched gluten. She has to have her own pots and pans to cook her gluten free meals. And she can just forget about ever going to a restaurant. She has the most severe case of celiac I have ever heard of.

My husband (thank goodness) can use a cookie sheet or fork that has been contaminated with gluten once it has been washed (decontaminated). However he sometimes gets trace amounts of gluten in his food from cross contamination. One time his dad made us all spaghetti but used the same spoon to stir both the GF spaghetti sauce and regular spaghetti sauce and my husband got sick. When we first started the GF diet years ago we bought a roast chicken from a supermarket deli and didn’t think to check the ingredients. It was just roast chicken right? Well after my husband got very sick, we realized the chicken was injected with seasoning that contained, you guessed it, flour. My point was if you are having celiac symptoms when you eat beef and chicken, look for hidden gluten -anything processed could be the culprit.

No one should go through this life changing experience alone. Check the GIG to see if they have a local support group meeting in your area. It’s free to attend a meeting and you can ask questions to any of the members. They have gone through what you are going through and they will help you through.

Best of Luck!

-A.K.

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Breaking the News – Encouraging Family Members to be Tested for Celiac Disease March 12, 2009

Since my husband C. was diagnosed, no one in our family has been tested for Celiac Disease. In an effort to spare his family from the potential fatal complications that arise when CD is untreated, I am writing this letter to his family members. Maybe you could share it with your family if they are reluctant to be tested.

Dear Family Member,

Your relative C. was diagnosed with Celiac Disease (or CD) in September of 2007. Since then we have learned that CD runs in families and as a genetic relative, you should be tested.

Celiac Disease is an autoimmune disorder which affects about 1 in 133 people in the general population. If you have a relative with celiac disease, your risk of having it also increases up to 60%.

There are over 250 known symptoms of Celiac Disease. You will not have all of them. Symptoms tend to be the same within families. C.’s CD presented with abdominal pain, nausea, vomiting, and diarrhea, inability to gain weight, anemia, mood disorders, ataxia, easily broken bones, and possibly acne, and alopecia.

Gastrointestinal Symptoms of Celiac Disease include:

  • Abdominal pain and distension
  • Acid reflux
  • Bloating
  • Constipation
  • Diarrhea
  • Gas and flatulence
  • Greasy; foul smelling, floating stools
  • Nausea
  • Vomiting
  • Weight loss or weight gain

Non-gastrointestinal Symptoms of Celiac Disease include:

  • Fatigue and weakness (anemia)
  • Vitamin and/or mineral deficiencies
  • Headaches (including migraines)
  • Joint/bone pain
  • Depression, irritability, listlessness, and other mood disorders
  • “Fuzzy brain” or inability to concentrate
  • Infertility
  • Abnormal menstrual cycles
  • Dental enamel deficiencies and irregularities
  • Seizures
  • Ataxia (bad balance)
  • Nerve Damage (peripheral neuropathy)
  • Respiratory problems
  • Canker sores (apthous ulcers)
  • Lactose intolerance
  • Eczema/psoriasis (and other skin conditions)
  • Rosacea
  • Acne
  • other autoimmune disorders
  • Early onset osteoporosis
  • Hair loss (alopecia)
  • Bruising easily
  • Low blood sugar (hypoglycemia)
  • Muscle cramping
  • Nosebleeds
  • Swelling and inflammation
  • Night blindness

Kids often present with:

  • Irritability
  • Inability to concentrate
  • ADD/ADHD
  • Failure to thrive
  • Short stature or delayed growth
  • Delayed onset of puberty
  • Weak bones or bone pain
  • Abdominal pain and distention
  • Nosebleeds

In the US, it takes an average of 11 years for doctors to diagnose CD from the onset of symptoms. CD is often misdiagnosed as psychological issues (hypochondria, depression, anxiety, or neurosis), IBS (ie: inexplicable bowel symptoms), spastic colon, chronic fatigue syndrome, fibromyalgia, lupus, unexplained anemia, migraines or unexplained headaches, unexplained infertility, inflammatory bowel disease or colitis, cancer, viral infection, food allergy, parasites, gallbladder disease, thyroid disease, cystic fibrosis, acid reflux, diverticulitis, diabetes, or eczema.

Between the ages of 6 to 22, symptoms often disappear, making diagnosis that much harder. If a person is not diagnosed by the age of 6, it is likely they will not be diagnosed until they are over 50. Symptoms that present it the 20’s and 30’s will often be blamed on life changes.

There are multiple tests for Celiac Disease: blood tests, biopsies, urine tests, stool tests, and genetic tests.

Blood Tests look for antibodies produced when someone with CD eats gluten (a protein found in wheat, rye, and barley). If you do not eat gluten every day for 3 months before the test, it is possible you will get a false negative for CD. You should have the following 5 tests done all at the same time: 1-tTG-IgA, 2-EMA-IgA, 3-AGA-IgA, 4-AGA-IgG, 5-Total serum IgA.If you are IgA deficient (a significant portion of the population is) your results may be misinterpreted as a false negative. Therefore if test 5 is lower than normal, someone qualified needs to reinterpret the results of tests 1,2, and 3.

If blood tests confirm the possibility of CD, doctors will want to biopsy the small intestine during an endoscopy. They will take samples of your villi (the hair like protrusions that absorb nutrition from your food in the small intestine) to see if they are blunted or flat. Any damage to the villi confirms a diagnosis of CD. Blunt or flat indicates the extent of the damage already done to the body- flat is worse. If you eliminate gluten from your diet prior to the biopsy, you may get a false negative test result.

If you have CD, you will be told you need to follow the Gluten Free Diet. You will need to substitute the wheat, rye, barley and oats in your diet with gluten free grains like rice, corn, potato, tapioca, soy, amaranth, beans, arrowroot, buckwheat, quinoa, millet, teff, nuts, or Certified Gluten Free oats.

The damage done to your villi will begin to heal once you have eliminated gluten from your diet and your symptoms will disappear completely in 6 weeks or less. If you accidentally or intentionally ingest gluten after beginning the diet your symptoms will return with force. Your body will be fully healed within 2 years after beginning the GF diet.

Urine Tests look for peptides which indicate your body is not breaking down the protein gluten. You can skip this test and go straight to the blood test because you have a relative with CD.

Stool Tests can be done without a doctor’s involvement, and you do not need to be eating gluten for the test to be accurate. Like blood tests, stool tests detect the presence of antibodies, the immune system’s reaction to gluten in your diet. Insurance will not pay for this test.

Genetic Tests look for the HLA-DQ2 and HLA-DQ8 genes in blood or stool. These are actually a combination of genes that do not follow the dominant/recessive pattern of Mendelian genetics. C. may have gotten some or all of the genes for Celiac Disease from both sides of his family. If you do not have one of these two genes, there is a 99% chance you do not have CD. If you do have one of these genes, there is still a 30% chance you do not have CD. Conversely, if you do have one of the genes, there is a 70% chance you do have CD, whether you experience symptoms or not.

If you are diagnosed with Gluten Sensitivity, your condition is not as severe as Celiac Disease. Studies have shown an environmental trigger causes Gluten Sensitivity to turn into Celiac Disease. We believe C.’s trigger was his tonsil surgery in February of 2004. But Gluten Sensitivity cannot turn into full blown Celiac Disease if you eliminate gluten from your diet. Gluten must be present in your diet to turn Gluten Sensitivity into Celiac Disease.

If you are asymptomatic with CD, you are still doing damage to your body by eating gluten, so resist the temptation to think you don’t need to stop eating gluten. For example, if you have CD, your risk of getting cancer (intestinal lymphoma) decreases 50% by eliminating gluten from your diet.

If you have CD or Gluten Sensitivity, you may not realize how bad you fell until you begin the GF diet. C. made the comment that his stomach always gurgled after eating and it was a new sensation not to feel it gurgle once he started the GF diet.

A note about insurance: Once you have attached Celiac Disease to your medical history through testing, you will no longer be eligible for private insurance due to the “potential terminal nature” of the disease. You can always skip testing and follow the diet for 6 weeks to see if you or anyone in your family responds positively to eliminating gluten from the menu. If you find your children respond to the diet and would like their school to make arrangements for them, you will most likely need to have a pediatrician prescribe the diet, something they may not do without testing. Its a difficult situation to be in, and I hope it doesn’t apply to any of you.

If you are diagnosed with Celiac Diesease, or want more inforamtion about the GF diet, please contact us and we will help you through the mountains of accurate and inacurate information available online. Please remember to send out a letter like this one to your genetic relatives so they too can be tested for Celiac Disease.

We hope and pray that you all enjoy the blessings of good health.

All our Love,

C. & A. K.