Comments on: Celiac Diagnosis Challenges and then Dessert http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/ a food snuggery Tue, 01 Nov 2011 18:01:35 -0700 hourly 1 http://wordpress.org/?v=3.1.3 By: Diana http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-41295 Diana Thu, 11 Nov 2010 16:52:48 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-41295 For 30 years I couldn't eat wheat, and to a lesser extent tomato sauce, some fruit juices, soda and other foods without severe intestinal problems and what seemed to be an autoimmune arthritis pain/burning in my hands and feet with constant fatique. I was tested for everything and told I had a problem digesting a carbohydrate (in addition to lactose) but that is couldn't be identified. Finally after years of searching books and on line, I found it this year, fructose and fructans. Check out this article. http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/barrettarticle.pdf. By following the "safe" diet I am completely symptom free. The researches speculate that it is a significant cause of IBS as well so perhaps if you have negative celiac results but problems with wheat this could be it. So now I am here looking for a wheat free flour mix recipe that could be used for quick breads, cakes, or cookies. Does anyone have a good one? For 30 years I couldn’t eat wheat, and to a lesser extent tomato sauce, some fruit juices, soda and other foods without severe intestinal problems and what seemed to be an autoimmune arthritis pain/burning in my hands and feet with constant fatique. I was tested for everything and told I had a problem digesting a carbohydrate (in addition to lactose) but that is couldn’t be identified. Finally after years of searching books and on line, I found it this year, fructose and fructans. Check out this article. http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/barrettarticle.pdf. By following the “safe” diet I am completely symptom free. The researches speculate that it is a significant cause of IBS as well so perhaps if you have negative celiac results but problems with wheat this could be it. So now I am here looking for a wheat free flour mix recipe that could be used for quick breads, cakes, or cookies. Does anyone have a good one?

]]> By: Bill http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-5399 Bill Tue, 17 Jun 2008 19:03:33 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-5399 I am on a gluten-free diet and I loved the recipe. It is hard to find tasty food without the flour but in the long run it is definitely worth it! I am on a gluten-free diet and I loved the recipe. It is hard to find tasty food without the flour but in the long run it is definitely worth it!

]]> By: Natalie http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-494 Natalie Sat, 01 Sep 2007 21:38:18 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-494 Kel- I am so glad you enjoyed my post. I am much happier gluten free. I wish it was easier avoiding hidden gluten. Like your daughter, I have a visible skin reaction- mine is hives. Sometimes I get hives with things that claim to be gluten free and that is when it gets confusing. Thanks for the tip on Taco Del Mar! Kel-
I am so glad you enjoyed my post. I am much happier gluten free. I wish it was easier avoiding hidden gluten. Like your daughter, I have a visible skin reaction- mine is hives. Sometimes I get hives with things that claim to be gluten free and that is when it gets confusing. Thanks for the tip on Taco Del Mar!

]]> By: Kel http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-485 Kel Sat, 01 Sep 2007 04:22:19 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-485 a fellow blogger just forwarded my your link - and after reading the first post I have bookmarked you a favorite! I was looking for help on substituting in recipes, and I am not a big baker anyway so it can be intimidating! we happened upon a gluten intolerance diagnosis while exploring food allergies - my daughter (11 yrs) is a completely changed child and our doctor is really supportive - she stated she only once diagnosed celiac and it was a textbook case . . . so if we figured this out, then do it and she can always test if ever needed since this discovery my husband has also adopted a GF diet we have struggled most with hidden gluten, but "luckily" my daughter has the dermatitis so she visibly reacts within 1-3 hours (like the time we learned Taco Del Mar, a restaurant claiming to be gluten free, uses rice coated with gluten so it is non-stick!) anyway - rambling in my excitement finding you! a fellow blogger just forwarded my your link – and after reading the first post I have bookmarked you a favorite! I was looking for help on substituting in recipes, and I am not a big baker anyway so it can be intimidating!

we happened upon a gluten intolerance diagnosis while exploring food allergies – my daughter (11 yrs) is a completely changed child and our doctor is really supportive – she stated she only once diagnosed celiac and it was a textbook case . . . so if we figured this out, then do it and she can always test if ever needed

since this discovery my husband has also adopted a GF diet

we have struggled most with hidden gluten, but “luckily” my daughter has the dermatitis so she visibly reacts within 1-3 hours (like the time we learned Taco Del Mar, a restaurant claiming to be gluten free, uses rice coated with gluten so it is non-stick!)

anyway – rambling in my excitement finding you!

]]> By: Natalie http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-434 Natalie Wed, 22 Aug 2007 14:25:36 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-434 Thanks for the input Kathryn! Having a family support system is really important- especially in that first year! I would not have made it without the support of my family. Thanks for the input Kathryn! Having a family support system is really important- especially in that first year! I would not have made it without the support of my family.

]]> By: Kathryn http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-431 Kathryn Tue, 21 Aug 2007 21:23:50 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-431 Natalie, I love reading your blog and hearing the updates on your family. My husband and I are thinking of starting our own family soon, and it's encouraging to hear you doing pregnancy, breastfeeding, and feeding a toddler while being gluten free. So thanks for that! My main symptom was dermatitis herpetiformis, and my skin biopsy came back with an unclear diagnosis. That was really frustrating - I wanted to know one way or the other, but I've come to accept my celiac and feel much better now that I've been GF for almost 3 years! Hang in there Caroline. It probably will take a while for you to feel better, but there are way worse things to give up in the world than gluten. Having a family support system is terrific - I have 4 maternal aunts and uncles and two cousins (so far) with celiac, and we're quite a crowd at the family reunions ;). People will ask you "how can you stand it? I could never give up wheat," but they don't understand how much better our quality of life is without it. Welcome to the club! One note, once you've gone gluten-free your tests will come back negative since your body is no longer making the antibodies they test for. You really should be eating gluten if/when you plan to be tested :P. Looking forward to the next post! :) -gluten-free in the OC- Natalie, I love reading your blog and hearing the updates on your family. My husband and I are thinking of starting our own family soon, and it’s encouraging to hear you doing pregnancy, breastfeeding, and feeding a toddler while being gluten free. So thanks for that!

My main symptom was dermatitis herpetiformis, and my skin biopsy came back with an unclear diagnosis. That was really frustrating – I wanted to know one way or the other, but I’ve come to accept my celiac and feel much better now that I’ve been GF for almost 3 years!

Hang in there Caroline. It probably will take a while for you to feel better, but there are way worse things to give up in the world than gluten. Having a family support system is terrific – I have 4 maternal aunts and uncles and two cousins (so far) with celiac, and we’re quite a crowd at the family reunions ;) . People will ask you “how can you stand it? I could never give up wheat,” but they don’t understand how much better our quality of life is without it. Welcome to the club!

One note, once you’ve gone gluten-free your tests will come back negative since your body is no longer making the antibodies they test for. You really should be eating gluten if/when you plan to be tested :P .

Looking forward to the next post! :)
-gluten-free in the OC-

]]> By: Natalie http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-429 Natalie Tue, 21 Aug 2007 09:46:32 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-429 Liz- Thank you! I love experimenting with baked goods now, but it took me a long time to experiment with them. I had to let go of the original first I guess. Most recipes are as good as the gluten version. Liz- Thank you! I love experimenting with baked goods now, but it took me a long time to experiment with them. I had to let go of the original first I guess. Most recipes are as good as the gluten version.

]]> By: liz http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-428 liz Mon, 20 Aug 2007 16:46:16 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-428 yum! looks so good. I love the experiment of replacing flours with normal recipes, it makes it like an adventure and most of the time turns out well. p.s. congratulations on your new baby! yum! looks so good.

I love the experiment of replacing flours with normal recipes, it makes it like an adventure and most of the time turns out well.

p.s. congratulations on your new baby!

]]> By: Natalie http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-427 Natalie Sun, 19 Aug 2007 23:12:54 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-427 Karen- That is an excellent point! Thank you! I will probably get tested after I have my children and stop breastfeeding. Karen- That is an excellent point! Thank you! I will probably get tested after I have my children and stop breastfeeding.

]]> By: Karen http://glutenfreemommy.com/diagnosis-challenges-and-then-dessert/comment-page-1/#comment-425 Karen Sun, 19 Aug 2007 14:04:27 +0000 http://glutenfreemommy.com/2007/08/16/diagnosis-challenges-and-then-dessert/#comment-425 Caroline, I have been GF for 16 months now, and my celiac symptoms sound almost identical to yours ( very few GI issues here either)! It took 6 months of being gluten free to completely eliminate my migraine-like headaches, horrible fatigue and joint pain, and almost a year before I could again tolerate small amounts of dairy.You can do this! Once you get the hang of it, it really isn't bad! I have the offical diagnosis, thanks to the EGD. It was very quick and easy since I was "asleep". It has been helpful to be able to truly know how my GI was recovering and regenerating, and I was thrilled to know that in July I am back to where I should be- now my focus is on staying that way. It is true you do not need to be diagnosed to be gluten free and healthy- just be patient and pay close attention to your body. Often relief is slow in coming, but worth it. I am one of those weird people that actaully like the celiac being on my medical records. It simplifies things when I need a prescription or treatment to have "proof" that it is medically necessary to have GF meds and not have to defend myself and convince a doctor or pharmacist that I need a gluten free alternative. Caroline, I have been GF for 16 months now, and my celiac symptoms sound almost identical to yours ( very few GI issues here either)! It took 6 months of being gluten free to completely eliminate my migraine-like headaches, horrible fatigue and joint pain, and almost a year before I could again tolerate small amounts of dairy.You can do this! Once you get the hang of it, it really isn’t bad!

I have the offical diagnosis, thanks to the EGD. It was very quick and easy since I was “asleep”. It has been helpful to be able to truly know how my GI was recovering and regenerating, and I was thrilled to know that in July I am back to where I should be- now my focus is on staying that way. It is true you do not need to be diagnosed to be gluten free and healthy- just be patient and pay close attention to your body. Often relief is slow in coming, but worth it.

I am one of those weird people that actaully like the celiac being on my medical records. It simplifies things when I need a prescription or treatment to have “proof” that it is medically necessary to have GF meds and not have to defend myself and convince a doctor or pharmacist that I need a gluten free alternative.

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