Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Barbara, Please do not regret anything you did with your middle daughter’s health care! After all you said that you had her in to many doctors and if they cannot find out what is wrong with her with their education how can we parents be held responsible for things if we didn’t find something like this. There is getting to be more and more information on Celiac Disease however even now I had not heard about it or didn’t really pay attention to it before my daughter was diagnosed. It is sad that you have to suffer through losing a daughter and the heartache that comes with it. Please do not add to your grief when you were a great mom who took her from doctor to doctor that could not ever find anything. I know for a long time that my daughter was sick and for 2 years I would take her to the doctor and we could not find anything and after MANY medical bills and no answers we finally stumbled onto the final answer! So if the doctor’s cannot find answers how can we parents do anymore? It is much easier said than done to not beat ourselves up when our kids are sick but it isn’t like we haven’t tried to find out what was wrong with them and it isn’t like we don’t doctor with them. Just cling to the fact you did your best for her and know that while you might have new information now you didn’t have it then and cannot be held responsible for that information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Dear Barbara, My heart breaks for your loss! I'm so very sorry. I can't imagine the road you've been down. I pray that you do find an answer for Molly. I bet it is CD, esp if your other daughter had fibromyalgia. Those can go hand in hand. Don't beat yourself up over not getting your other daughter diagnosed....remember that most people aren't diagnosed. Only recently (in the past few months I'd say) has the big medical and media blitz been happening to raise awareness. It's taken an average of 11 years for people to get diagnosed. As for the vegetarian thing, I can at least tell you that your daughter doesn't have to give up pizza! I follow the pizza crust recipe in Carol Fenster's Wheat Free Recipes and Menus and it is absolutely wonderful. My husband, who isn't GF and eats regular pizza a lot, loves it more than his " normal " pizza. The bread is a little harder, but doable. I think protein sources will have to focus on eggs, cheese, beans and tofu (although many people are sensitive to soy when they first get the CD diagnosis...soy and lactose, although I think sometimes they can be put back in the diet later after healing takes place). Amy's cheese enchiladas are vegetarian and GF (so are many other Amy's frozen foods). Hang in there. It's nice to meet you. Elaine Barbara Z Banks wrote: > Molly is understandably irritated by the idea of having her diet > further restricted. We are lifelong vegetarians and all four of my > children have made the choice to remain veggie as they approached > adulthood, but having bread and pizza literally taken from her mouth > does not make the youngest a happy camper! Still, if she is Dx'd with > CD, she understands the consequences of gluten, and is certainly eager > to start feeling good again. Of course, she has not for years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Dear Barbara, My heart breaks for your loss! I'm so very sorry. I can't imagine the road you've been down. I pray that you do find an answer for Molly. I bet it is CD, esp if your other daughter had fibromyalgia. Those can go hand in hand. Don't beat yourself up over not getting your other daughter diagnosed....remember that most people aren't diagnosed. Only recently (in the past few months I'd say) has the big medical and media blitz been happening to raise awareness. It's taken an average of 11 years for people to get diagnosed. As for the vegetarian thing, I can at least tell you that your daughter doesn't have to give up pizza! I follow the pizza crust recipe in Carol Fenster's Wheat Free Recipes and Menus and it is absolutely wonderful. My husband, who isn't GF and eats regular pizza a lot, loves it more than his " normal " pizza. The bread is a little harder, but doable. I think protein sources will have to focus on eggs, cheese, beans and tofu (although many people are sensitive to soy when they first get the CD diagnosis...soy and lactose, although I think sometimes they can be put back in the diet later after healing takes place). Amy's cheese enchiladas are vegetarian and GF (so are many other Amy's frozen foods). Hang in there. It's nice to meet you. Elaine Barbara Z Banks wrote: > Molly is understandably irritated by the idea of having her diet > further restricted. We are lifelong vegetarians and all four of my > children have made the choice to remain veggie as they approached > adulthood, but having bread and pizza literally taken from her mouth > does not make the youngest a happy camper! Still, if she is Dx'd with > CD, she understands the consequences of gluten, and is certainly eager > to start feeling good again. Of course, she has not for years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Barbara, I wanted to start out by saying I am sorry for your loss, being diagnosed could not have prevented the chain of events that took place to cause the death of your child. Please do not be so hard on yourself, we have ALL struggled to get diagnosis' for our children. Unfortunately, the US is far behind in recognizing and diagnosing Celiac's disease. With each new family that joins a support system and with each new story, I see more and more hope in educating the medical community. If your daughter Molly is diagnosed with a gluten intolerance and you strongly suspect your other daughter had it as well I would venture to say that you should all get tested. There are those who have tested positive and have had no overt intestinal symptoms. God bless and good luck! I am NOT a doctor, nor do I play one on t.v.! I am just a mother of a gluten intolerant child who has read and chatted with others in the same boat. Please feel free to challenge me or point me towards any research and information, I'm always searching! Priscilla Graham " Cleaning your house while your kids are still growing is like shoveling the walk before it stops snowing. " --Phyllis Diller SAHM to 3 beautiful boys and one adorable girl - 6 - 4 (Gluten Free since 11/03) - 2 Abigail - 6 months My hands are full, but my heart is not! Quote Link to comment Share on other sites More sharing options...
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