October 24, 2010 at 2:28 pm #7878
My family of 4 lives in a small town in Idaho and we all happen to be Celiac/Gluten Intolerant. Our daughter had symptoms from her first year of life, with terrible diaper and face rashes after introducing her wonderful Organic Multi Grain Baby cereal She hated food, only wanting milk. By Kindergarten, she had 'allergies' for which she was on medication, daily stomachaches, 'wavy' eyes, anxiety, racing heart episodes and was sick most of the winter taking antibiotics about 4 times a year. In 1st grade, her bloody noses started. Then the joint pains, 'personality' issues, bone pains. The Dr. always had a reasonable sounding diagnosis: Difficult personality, school anxiety, dry climate, weak immune systems are normal etc. Food issues were never discussed. When our son was born in 1995, he was an incredibly large baby. In both pregnancies, I had ENORMOUS appetite—-and cravings for foods I would never have touched before! I gained HUGE amounts of weight and even remember the Dr. telling me I was gaining too fast and I should cut back my food intake. He really almost lost a hand or something for that Anyways, our son was healthy but a hungry baby. He started in on table food probably by 4 months! He LOVED to eat. He really was never sick, never complained but did shove handfuls of dirt into his mouth as a baby. He loved vinegar too. Then he started to get the bloody noses at about 4. By 2004, the daily stomachaches, headaches and other symptoms were so awful in our daughter that on the urging of a friend, we did the Prometheus blood test for her and my husband. He has had terrible Psoriasis on his scalp and various patches on his body for years. Her blood test said “Yes–but clarify Celiac with HLA testing.” His was totally negative—-go home and eat whatever you want. I knew this was not a clear cut answer for us—-and without health insurance there was no way the Gold Standard of more blood testing and the biopsy was affordable for us. So I ended up using Enterolab. I really only thought our daughter was going to be positive. Surprise, surprise—-not only was our daughter positive with DQ8, but so was 'I' and so was my husband!!! Our son apparently only has the 'Gluten sensitive' genes of double DQ1—-but his body breaks down and reacts to gluten in the exact same way as his sisters. Those typical 'aging' symptoms of heartburn, joint pains, varicose veins, bleeding gums, crankiness, inability to lose all the weight, bloating, bad circulation, extreme Raynaud's etc. disappeared in my husband and myself.
We started the SAGFD—Standard American Gluten Free Diet—switching to all the packaged brands of GF foods we had been buying with regular gluten. Even though the ingredient list made me cringe with all those refined flours and weird ingredients. But I wanted this diet easy and didn't want the kids to feel left out. After feeling wonderful for probably the first couple of years—-things started to change. All of us were experiencing our typical gluten symptoms—-even though everything was apparently GF. I spent literally hours on the internet searching, reading, asking questions until I finally found out that people WERE reacting to these packaged foods—with typical Gluten Reaction symptoms! I wasn't crazy after all!!! It was such a relief—-but our world shrank even further than it already had going GF. We tried and eliminated food after food—-until still sick I came across Raw Fooding. We tried that for 6 months and did get better, but have finally transitioned into our current 99% grain free—True Gluten Free Diet. So glad I found Celiac Society to affirm my own convictions I had already come to—-that no grains are safe for many Celiacs—if not all. We are healthy on a diet of pretty much ALL fresh foods, no packaged anything—including spices. Our kids do eat a small amount of grains—Udi's pizza crust and bagels and Bob's Red Mill cornbread mixes without problems. I can't say the same for my husband and myself. We are still trying to figure out the trigger for his unrelenting psoriasis—but going True GF has proven to be MUCH harder to accomplish that we would have thought. That sneaky gluten really does sneak into everything.
We have found now 5 years into being a GF family that reading labels is only part of the process. Each company must be called to discover sourcing and transport and whether production facilities are shared with any gluten products. Certified GF is the best—-but still sometimes not enough. GF companies that use Canola are out for us too. As are Dole packaged dates and most other mainstream brands that don't have a GF list and admit their facilities are shared. Fresh food is easy to find at the store—if not a bit more expensive–but the health benefits are worth it. We consider it our own 'health insurance' at this point. If we want/need nuts, dates, coconut oils etc. I must special order from companies that check out to be not only safe—but understand what cross contamination is and that it's a real problem. All of these steps are worth it for us—perhaps more expensive, perhaps more time consuming and certainly don't leave much room for spontaneity in cooking and eating anymore—but being healthy without constant aches and pains or more serious things that send us to the expensive DR. is totally worth it
I am a firm believer and promoter of True GF! I am happy I found Celiac Society and this forum.
KatieOctober 25, 2010 at 6:47 pm #8803
Welcome aboard! Thanks for sharing your story with us. I really liked your use of the acronym “SAGFD”
In good health,
Dr. OOctober 25, 2010 at 9:15 pm #8806
Thanks Dr. O! My Celiac friend and I came up with that one Very happy with this site and all the work at educating you are doing about True GF.October 28, 2010 at 8:17 pm #8814
Welcome and I understand how hard it is to be totally gluten free. For me the hard part isn't actually eating the food, it is the guilt that everyone else tries to place on your shoulders because they just don't know what to fix for you. I keep telling them, please don't fix anything for me I am happy the way I am eating and would only be stressed if someone else cooked my food. These are the same people in my life that have always been food pushers! I'm trying really hard to never be that, so glad I am now educated!November 5, 2010 at 9:51 am #8821
I know EXACTLY how you feel! We seem to be surrounded by the very same Food Pushers that use the guilt trip too! 5 years into, my own mother is still questioning our 'fad diet' and thinks we need to condition our bodies to take gluten again by eating bread once a week. AND she is an RN! In fact, my husband and I are just recovering from a dinner from one of our Food Pusher friends who puts us in the VERY uncomfortable position of not being able to say No to her cooking a couple of times a year—-which of course, those couple of times a year we eat at her house we get glutened.November 10, 2010 at 7:20 am #8823
I have had situations like that and I have learned to eat before I go and take enough dishes even if it is just one dish so that i can eat with them and enjoy their company, but not get glutened. I won't allow anyone to guilt me into eating gluten! It isn't worth your health, tell them when you get there with your dish, I'm so happy you invited us, I'm just not able to eat most foods, so I brought my own, but will really enjoy your company! I know it is hard to stand up to people, but it is so worth.
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