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Bobbie Jo

Member Since 25 Sep 2010
Offline Last Active Jan 26 2013 07:03 PM
has not set their status Updated 26 Sep · 0 comments

About Me

Family history of stomach cancer and several stomach problems. Diagnosed IBS in 2008. Stopped all dairy and issues went away.

Struggled with coughing attacks for several years. Doctors said it was asthma, but rescue meds never relieved.
Coughing was diagnosed as Vocal Cord Dysfunction (VCD) in 2008. Told to practice breathing exercises and relaxing when I had an attack. But after nearly passing out while struggling for air in a pizza place in 2009, I did further research on VCD. Learned through retired nurse, Carol Sidofsky, at http://cantbreathesuspectvcd.com that I may be gluten sensitive. I thought she was not right (denial), but she persisted.

I went gluten-free in July of 2010. Did not feel any better but reintroduced gluten after 3 months. Got really sick and started coughing too. Opted for gluten-free life.

After more research realized my 10 year old son's symptoms were similar to people with gluten intolerance - asthma, lethargic, dairy intolerance and poor enamel on teeth. I started weaning him off of gluten, then on a routine checkup at the doctor's office I had him tested for gluten antibodies. The test came back negative, but knew the test could not be reliable, especially since I had already been eliminating gluten.

My hero, Carol, suggested I try having the kids tested Enterolab in Dallas - the stool tests. I had both my son and 9 year old daughter tested.

Surprisingly to me, my daughter tested positive for antibodies, son did not. But again - I had been taking the gluten out of his diet. Looking back, I see the clear signs for gluten intolerance in her life too, they were a little different, but - mainly, stomach problems were the clue. She seemed to get upset tummies and poor stools a lot. Teachers complained about her inattentiveness too, and she suffered asthma. She was also very short. It was really hard to understand that this could all be linked to wheat, especially since our asthma doctor dismissed the whole concept.

I took them both completely off of gluten and the results were astounding. Within a week they were both more alert, doing better in school, and even started growing rapidly.

As for asthma, we have made it half way through winter, about six months into this diet, and each child has had a couple of colds, but for first time in their lives, the colds did NOT develop into full blown asthma attacks. Miracle!

As for my coughing, I did have one more coughing attack a few months into the gluten-free diet. But I am now learning that I was contaminating myself thru things like the gluten possible in ridges of pots and pans (Circulon type) Now I have stainless steel - easier to clean), also certain deli meats, broth - those hidden sources. Still, my body is feeling better and I haven't had a coughing attack in... months! So praise God.

Biggest help:

Carol Sidofsky
Celiac.com - people here are incredible!
Danna Korn's books - life savers!
Children's books for kids with Celiac - totally put my kids at ease: "The Gluten-Free Kid" and "Eating Gluten Free with Emily"

Best advice we have received/lessons learned:

-You don't have to take out a third mortgage to feed your kids. You can learn to shop at regular stores (Danna
Korn's book on Celiac Life)
-M&Ms are OK (thank you God)
-Kids can survive birthday parties and snack days at school with their own gluten-free treats
-Hormel Chili WITH Beans and Fritos are OK (yea! - long live frito pies for moms in a rush to cook!)
-Doctors can be real bone heads. Go with your instinct and own experiences.
-I am not alone.

Thank you celiac.com posters. Thank you Carol Sidofsky!

Gluten-free Life is Better!

July 2011 UPDATE: It's one year since going gluten free and feel great. The kids and I have gotten very used to this diet. We do miss eating out Posted Image But have a few favorite restaurants that are safe - mainly Pei Wei. Jason's Deli is good too. Some Mexican food places are safe. (NOTE: On the borders chips are NOT SAFE!!!) (my daughter wrote that - I'm not sure if that is true. Something keeps making her sick there, though.)
Biggest disappointment - finding out most fast food taco places have wheat in their taco meat!

November 2011 Update: Kids are now average height as other kids in the classes! No longer being called the shortest kids. They do not want anything to do with gluten. They are thrilled that they feel good and are getting praises from the adults for their increased attentiveness. They also like not having to use the nebulizer anymore for asthma attacks. My son just got a clean bill of health from the asthma doctor even though he has not been on preventive medicines for a year. My daughter, however, did have some restricted breathing, not bad, but enough that we wanted to put her back on her preventive medicine. She is on a swim team and really pushes herself, so I do not want to take any chances. Still, she's nowhere where she was, which was all night coughing and breathing treatments.

I feel really good and would not eat gluten if you paid me. AND - I have not had a violent, gasping for air, tears streaming down cheeks, coughing attack in months. Maybe a year.

My greatest food discoveries to date:

Betty Crocker Gluten Free Chocolate Chip cookies (which you can crumble and make in to a pie crust with melted butter, I'm told. Must try for Thanksgiving!)
Tostadas - I never bought these before, but now these are a great treat for the kids, especially when their friends are over. We load them with cheese, black beans, heat in oven and put mild hot sauce on the side. These also make great food for school lunches. Not the healthiest meal, mind you, but you can't do turkey and fruit every day!
Spring Rolls - enjoy these more now since going gluten-free. Pei Wei's are great.
Hodgson's Mill's Pizza Crust - not missing any wheat there!
California rolls with REAL crabmeat - it took me awhile to realize that imitation crab meat in most California rolls has wheat. Just ask for the real stuff.
Also - When at Pei Wei, take your unused gluten free soy sauce packets and carry them around with you so you can have them ready at your next sushi stop, since most places do not have the gluten-free soy sauce. It's funny to ask them though and see the confusion.

Hound your relatives to get tested. I've been annoying mine for a year and so far - 5 more confirmed cases. We are breaking the cycle in this family!!!!

The only thing I wish I would have done differently - done the blood test and stool test for gluten intolerance before I went off of gluten completely. Although the tests are not always conclusive, I think it's good to try before you elimiate gluten completely. Especially since once you go off and decide you want the test, you have to reintroduce gluten for like 3 months, and your body will not like that at all. Once body gets rid of it, just a little can be very painful. I'm not doing that. Gluten is history. Not touching it.

April 2012 - Feel great! I breeze through even little allergy or cold symptoms with NO coughing spells like I'm about to pass out. Kids still asthma free - this asthma doctor who was against us on the gluten - link now even says they don't even have asthma!!!! Oh my gosh.
This wheat is poison to us.
I hope more people discover this link.

I am getting more comfortable with cooking from scratch. The recipe books terrified me, but finally we found one that is perfect - "Recipes for Gluten Free Kids". I mean - it's cooking on a 4th grade level, and it's food kids will eat. And it has pictures! Posted Image

Here is a FANTASTIC gluten free flour subsitute - makes wonderful pancakes, cupcakes, fried chicken, cakes... you are not missing wheat here:
Flour Blend (and if you don't have this- it is SO good for any flour substitute):
1 C. white or brown rice flour
1 C. sorghum flour
1 C tapioca flour
1 C cornstarch
1 C almond or coconut flour

This is some advice I gave someone asking about what to eat. May be helpful for new people:

For a college guy - here are some quick food tips to get him through:
*Tacos (Fast food tacos have wheat! Most nice restaurants are OK.)
*Baked potatoes (Wendy's, Mcalisters, most delis)
*Hamburgers without the bread
*packaged lunch meat
*Chex cereal (corn, rice, honey nut, cinnamon and chocolate)
*Salads (Skip the croutons. Check the dressings. Ranch is safe.)
*Gluten free bread (Udi's is the best. Homeland and Health food stores)
*Cheese (Thank God)
*Gluten Free crackers (gluten-free aisle at Walmart/Homeland - NutThins)
*Annie's Gluten Free mac and cheese (target, walmart)
*Gluten Free Pizza (Hideaway, but $$$, also gluten-free section at Homeland)
*Rice Noodles (single serving microwave dinners at Walmart - asian section)
*Most chips (Always check. Some have wheat like red bag Doritos)
*Did I say nachos? :)

Some Restaurants with a Gluten Free Menu:
*Carls Junior (Try the low carb burger where they use a big salad leaf for the bun)
*Pei Wei (We eat here a LOT. Ask for the gluten-free menu)
*Jason's Deli (FAVORITE)
*Subway (they don't have a gluten-free menu, but ask for whatever you want without the bun and eat it with a fork)
*If really starving and need food fast - go to any Homeland and get gluten free crackers, cheese and some fruit.

Watch out for hidden sources of wheat:
*Imitation crab meat (ask for real crab meat or salmon in things like Calif. rolls)
*Soy Sauce (can get gluten-free soy sauce at just about any store and in little packets at Pei Wei)
*barbecue - most but not all has some wheat in the flavoring. Just ask any manager and they should know. Or google the question.
*Some deli meats - avoid the grocery deli cut meats since shares a blade with wheat filled meats. crazy I know. But just buy the packaged stuff)

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