Disjointed August 13, 2009

It’s been so long since I added a new post I feel like I am going to explode. I’ll try not to trip over myself as I jump from item to item.

Sleep Apnea, Insomnia, and Narcolepsy, Oh-my!

First, that lack of energy I’ve been feeling for a while that makes me sleep more hours than my baby; well it turns out it might be some kind of sleep disorder. I’ve worn the Oxygen monitor and slept in the just-try-and-sleep-with-all-these-wires-glued-to-your-head bed and waited a week and called my doctor and they “just got the test results this morning and we haven’t had time to review them.” Okay, I said, call me as soon as you review them. That was days ago, and in the meantime I’m supposed to take an anti-depressant that makes me super sick just so I don’t fall asleep in the afternoon. I’m a bit frustrated.

Disaster at the Outback Steakhouse

Second, C. and I went to the Outback restaurant to celebrate a special occasion. Let me warn you that if it is not on their GF menu, it is NOT Gluten Free. Our waiter made the mistake of telling us that because the Thunder Brownie is on the GF menu, the Thunder Brownie Drink was also GF. That was a big fat LIE of ignorance. It must be cross-contaminated the way it is made because it made C. sick. Also, despite the fact that C. ordered a GF meal, without the sauce (as specified on the GF menu), and the waiter claims to have punched in GF twice when he put in our order, the gluten-sauce still came out on C.’s plate, spilling over the sides of the cup onto his meat. And the waiter, to my astonishment, just picked up the sauce cup like that made it all better. He must have admitted the mistake to his manager when we started trying to clean the sauce off C.’s plate with one of their good napkins. The manager was very nice. She had her staff prepare another entree for C. But by the time it came out, I had finished my meal, which would have been cold if C. hadn’t insisted I eat it.

Read Any Good Books Lately?

As a matter of fact, yes I have. I am just finishing the Enola Holmes series. It’s considered teen fiction. I consider it grown-up without being vulgar. It has a definite feminist undercurrent, not to the detriment of the novels. All preaching regarding a woman’s place is done in character by the characters themselves.

I’ve also read How to Write a D*** Good Mystery Novel by James N. Frey (rhymes with guy). In it he talks about writing a journal entry in the voice of your character to understand their motivations better. His workbook heroine was sentenced to hard time for a crime she didn’t commit, on the testimony of her boyfriend who got a plea deal for his testimony against her. In prison she found a higher power, and is trying to live a peaceful life. In the journal entry she tell us what she would do if she ever ran into her x-boyfriend again. She answered honestly that she didn’t know what would happen and she hopes to never find out. I was amazed by how well Frey knew his characters limitations and I plan to use many of his techniques in my own writing.

Another Personal Note

This time about living arrangements. I am still with the in-laws, but there is an end in site. Recently we took our house off the market. We are in the middle of a refinance. And once we do, we should be financially capable of paying for food again instead of spending all our money on credit card debt. I admit I have mixed feelings about this. I’m going to miss living with my Mother-in-law. Unlike the stereotype, she and my husband have very similar personalities so we get along swell. And it’s nice to have her offer to spend 10-20 minutes with the baby while I fold laundry or take a shower.

Pro Term Limits

Also, I heard someone, I’m almost positive it was Dave Ramsey, on the radio say that the only way to get the Fair Tax Passed is to get Term Limits passed first. I am so ready for tax reform. I hate April 15th. So now I’m pro Term Limits. I hope you will be too. We so badly need tax reform.

Social Poverty & My 22-cents on Nationalized Health Care

So we got a letter from the Social Security office letting us know that for every $1.00 we are contributing to Social Security, we can expect to get $0.78 back. How about I let the govm’t just take the $0.22 cents now and let me invest my $0.78 in my Savings Account at 0.5% interest and at least I’ll have made my 22 cents back in 50 years. I could use that money when I am 80.

My grandmother attended a centenarian celebration at the state capitol and I plan to attend one there, too. Hopefully without Nationalized Helath Care, because if I cannot trust the government with a $1 for 30-odd years, how can I trust them with my health?

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.

Gluten Free Words of Wisdom April 18, 2009

Warning to my GF readers, something at Cafe Rio is no longer Gluten Free. My husband can usually order the Pork Salad, with rice, pinto beans, lettuce, pico, guacamole, vinaigrette dressing, no tortilla, no chips, and no cheese, and be fine. But last night something contained gluten, not cross-contamination, but actual gluten, and he has been hating life today.

It made me really grateful for the Word of Wisdom.

The Word of Wisdom is a health code followed by practicing members of the Church of Jesus Christ of Latter Days Saints (LDS, or Mormons). That is why church members don’t drink tea, coffee, or alcohol, smoke tobacco, or do drugs.

The Church teaches: “When people purposefully take anything harmful into their bodies, they are not living in harmony with the Word of Wisdom.” (source)

I had a mission companion who had an interesting way of teaching this concept to investigators. She would explain that if a person was allergic to strawberries or pineapple, eating them would be against the Word of Wisdom. I think it helped people investigating the church see we weren’t just asking them to give up their coffee or beer.

Treating our bodies like the amazing gift they are, and keeping them free of harmful substances, helps us grow closer to God. And following the Gluten Free Diet is as important as keeping any other part of the Word of Wisdom for those with Celiac Disease.

Followers of the Word of Wisdom will be blessed by God for their obedience, whether or not they are members of the LDS church. To those who keep the Word of Wisdom, the Lord promised:

“All saints who remember to keep and do these sayings, walking in obedience to the commandments, shall receive health in their navel and marrow to their bones;

“And shall find wisdom and great treasures of knowledge, even hidden treasures;

“And shall run and not be weary, and shall walk and not faint.

“And I, the Lord, give unto them a promise, that the destroying angel shall pass by them, as the children of Israel, and not slay them” (D&C 89:18–21).

I am so grateful for the blessing of good health that my husband has enjoyed since being diagnosed with Celiac Disease and committing to follow the Gluten Free Diet. Especially on days like today when he is accidentally exposed to gluten, I see how following the Word of Wisdom, and the Gluten Free Diet has blessed our lives.

If you have Celiac Disease and are on the fence about following a Gluten Free Diet, I hope my words have given you hope for a healthier life. Please feel free to leave me a comment.

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.

Gluten Free Mormon

If you are a Gluten Free Mormon, you probably felt the five stages of grief (denial, anger, bargaining, despair, and acceptance) when you were first diagnosed with Celiac Disease. And if you are like my husband C., sacrament meeting may be the hardest place for you to be on Sunday.

There you sit, quiet, contemplating, worshipping, while young men in white shirts hand out little bits of bread that, to you, might as well be poison. Then your diagnosis hits you all over again. Anger, and despair. No body else has to get to church early every Sunday, bring their own bread, and worry about whether or not that boy touched your GF Rice bread before or after he broke the gluten laden bread.

And I don’t want you to have worry about that either. When eating out, you may carry a laminated Restaurant Card explaining your condition to the server and chef. When worshipping, you could carry a Sacrament Card to give to those who will be preparing your bread for the worship service.

Sacrament Card

I have a severe reaction to gluten. I am on a gluten-free diet. Thank you for working with me to prepare a sacrament service I can partake safely.

I cannot eat bread made from wheat, rye, barley, oats, or flours made from these grains.

I need to avoid bread.

This breadis made from rice, corn, potato, tapioca, soy, amaranth, beans, arrowroot, buckwheat, quinoa, millet, teff, or nut flour and is safe for me to eat. Unless it is cross-contaminated.

Please prevent contaminating my bread by washing your hands between touching your bread and touching my bread. Please break my bread back into this plastic bag, or use a separate tray that has been washed with soap and water since your bread was last on it.

If you have any questions, please feel free to ask me.

Thank you for working with me to give me the opportunity to relax and enjoy the sacrament service. I appreciate it very much.

Make sure you wait while the boy reads your card so you can see if he “gets it”, he can ask you questions, if he has any, and you can point out to him where you will be sitting. If you are visiting a ward besides your own, you may want to give a card to each of the boys at the table, and one for them to give to the deacon who will be carrying your bread.

In your own ward, give multiple cards to the bishop and young men’s president so they can make sure the boys understand and follow these instructions.

One last note. Do not lick the envelopes for tithes and offerings. The glue contains gluten. You can wet the glue with water from the fountain on a paper towel to seal the envelope.

Do you have a tips or tricks you have used to deal with CD while worshipping in your own church? I’d love to hear them. Please leave a comment.

Second Generation Celiac Risk February 7, 2009

My husband C. was diagnosed with Celiac Disease when I was 3 months pregnant. Because the disposition for this illness runs in families, we wanted to do everything we could to keep our new baby healthy.

We learned 1 in 3 girls with a parent with CD is likely to develop the disease. Boys have a lower risk, for reasons unexplained in our research, only a 1 in 8 chance. ***

At-risk infants are 5 times more likely to develop CD if they are exposed to gluten before the first 4-6 months of life; however, if a child is not exposed to gluten before the end of 6 months of life, their risk increases again. (Danna Korn, Gluten Free for Dummies,  p.55, (2006))

A woman without CD does not need to follow a Gluten Free Diet during gestation to protect her fetus. Women with CD who do not follow a gluten free diet have a higher rate of infertility, miscarriage, and birth defects. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healty Gluten Free Kids, p. 156, (2001))

Mothers nursing an at-risk infant should follow the Gluten Free Diet. My pediatrician explained if a nursing mother is accidentally exposed to a small amount gluten, it should not pose a risk to a nursing infant. Gluten, the protein found in wheat, rye, and barley, is coated before it is excreted in the breast milk. This coating should protect the nursing infant. Also, gluten is a large protein that normally cannot get from the intestine to the blood stream. A protein called zonulin, found in higher levels in people with CD, binds to key receptors in the intestine and opens the passage extra wide for the gluten to get through. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 157, (2001))

If your baby eats formula, exclusively or in addition to breast milk, at this time both the Similac and Enfamil formulas are gluten-free. The Walmart brand formula is not GF. If you have questions, always call the number on the packaging from your cell phone.

Better education leads to a better life. Good luck raising your at-risk child.

*** I still have not been able to find the exact reference to this statistic yet. Here is what I have found:

• If one of your children has Celiac Disease, the likelihood of another child having it is 30%. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 143, (2001))
• Up to 30% of people with the genes for CD, do not have CD; the other 70% do, whether they are diagnosed or not. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 148, (2001))
• Up to 30% of first degree relatives (parent, sibling, child) of a person with CD have CD. Although they may be asymptomatic, the damage is still being done. It is very common that they will resist if not flat out refuse to be tested. (Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 152, (2001))
• CD affects females about 3 times more often than males. ((Danna Korn, Kids with Celiac Disease: A Family guide to raising Happy, Healthy Gluten Free Kids, p. 7, (2001))

Oats February 5, 2009

Celiac Disease is an auto-immune disorder. You are genetically predisposed to contracting celiac or you are not. Celiac disease is triggered in your body by a stressful event like surgery or pregnancy. Before you have full-blown Celiac Disease, where the microscopic finger like protrusions in your small intestine called vili have been distroyed by your immune system,  you will most likely have one or more of the symptoms of Celiac Disease like stomach pain, gas, diarrhea, bloating, fever, constipation, failure to thrive, iron-deficiency, and the inability of your immune system to keep you healthy.

Treatment is a Gluten Free Diet. Symptoms disappear in as little as a few weeks. It can take months or even years for your vili to grow back and your immune system to rebuild. One of every two people with CD is likely to grow colon cancer. Each exposure to gluten may increase your risk of cancer. Persons with CD may be advised to begin annual colonoscopies at the age of 30.

Gluten is the protein found in wheat, rye, and barley. So why are oats off limits?

In the United States, wheat and oats may be grown in the same fields, and processed at the same mills. Oats are cross-contaminated. They will induce symptoms in those effected by CD.

Quaker Oats does not even address the cross contamination on their website, as persons with Celiac Disease are not their target customers.

You can buy Certified Gluten-Free Oats, online and at specialty stores.

Accidental Gluten Exposure January 8, 2009

Once again, we are dealing with an accidental gluten exposure at our house. I believe this is the third time in two weeks. We cannot figure out where the gluten is coming from. I look forward to having a gluten free kitchen again.

Looking for others experiences dealing with accidental gluten exposure (I wanted someone to commiserate with) I found a nifty link that details Celiac Disease and most of the necessary precautions educators can to make to protect a GF child’s environment:

Model Section 504 Plan

I hope you find this information useful for your GF situation.