Help
I posted a few days ago about my daughter being tested for celiac. Well, today, I recieved the results of her blood work. They told me that it came back "normal." I can't help but to be relieved yet disheartend at the same time. I just knew that we were on to something. Her symptoms were fitting celiac better than anything else that I had seen. I know that she could still have a gluten intolerence without having the disease itself. or at least I believe that's what I have gathered from this forum. I am going to put her on a gluten free diet and see how this all works out. I feel helpless. My daughter is in pain and this is the least I can do to try to figure this all out.
Okay, sorry about all that rambling, but now for my question: Any advice on where and how to start going gluten free? And am I right about her still being gluten intolerent without having celiac? Is that possible? or should I try to start seeking answers elsewhere?
Page 1 of 1
Just Got Blood Work Back....
Rate Topic:
#2
ravenwoodglass 
- Advanced Community Member
-
- Group: Advanced Members
- Posts: 12,491
- Joined: 17-April 04
Posted 11 November 2009 - 02:29 PM
She could even still be celiac with negative blood work. You are a wise mom to give the diet a try.
Start out with as much whole, unprocessed food as is possible. Unprocessed meats, chickens, beans, rice, potatoes, veggies and fruits are a good start. If you live near a Wegmans they label all their gluten-free stuff with a circle G which makes shopping easier. Go easy on the gluten free replacement foods for a little while and also drop dairy for a month or two as she will heal faster that way.
If you have favorite foods of hers that you want to know gluten statis on or want to make a gluten-free version just ask.
I hope she feels better soon.
Start out with as much whole, unprocessed food as is possible. Unprocessed meats, chickens, beans, rice, potatoes, veggies and fruits are a good start. If you live near a Wegmans they label all their gluten-free stuff with a circle G which makes shopping easier. Go easy on the gluten free replacement foods for a little while and also drop dairy for a month or two as she will heal faster that way.
If you have favorite foods of hers that you want to know gluten statis on or want to make a gluten-free version just ask.
I hope she feels better soon.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
#3
Yup
- Advanced Community Member
-
- Group: Advanced Members
- Posts: 100
- Joined: 11-April 09
Posted 11 November 2009 - 04:43 PM
vaness80, on Nov 11 2009, 11:22 AM, said:
I posted a few days ago about my daughter being tested for celiac. Well, today, I recieved the results of her blood work. They told me that it came back "normal." I can't help but to be relieved yet disheartend at the same time. I just knew that we were on to something. Her symptoms were fitting celiac better than anything else that I had seen. I know that she could still have a gluten intolerence without having the disease itself. or at least I believe that's what I have gathered from this forum. I am going to put her on a gluten free diet and see how this all works out. I feel helpless. My daughter is in pain and this is the least I can do to try to figure this all out.
Okay, sorry about all that rambling, but now for my question: Any advice on where and how to start going gluten free? And am I right about her still being gluten intolerent without having celiac? Is that possible? or should I try to start seeking answers elsewhere?
Okay, sorry about all that rambling, but now for my question: Any advice on where and how to start going gluten free? And am I right about her still being gluten intolerent without having celiac? Is that possible? or should I try to start seeking answers elsewhere?
I had negative blood work as well, but I had a doctor who followed his gut instinct (pun intended) and he did an endoscopie for me. Voila! Celiac. I'm going through the same thing with my kid. She is coming back negative, but she could be a silent celiac like me. Hang in there!
#4
vaness80
- New Community Member
-
- Group: Members
- Posts: 5
- Joined: 09-November 09
Posted 11 November 2009 - 05:24 PM
thank you for your replies!! It's all so overwhelming. But, my entire family has made the decision to go gluten free with my youngest daughter. So we are going to be a large support system for each other! Thank you for all of your help, I'm sure I will be back many times, not only to read and get advice but to ask questions! 
#5
ravenwoodglass
- Advanced Community Member
-
- Group: Advanced Members
- Posts: 12,491
- Joined: 17-April 04
Posted 12 November 2009 - 04:19 AM
vaness80, on Nov 11 2009, 06:24 PM, said:
thank you for your replies!! It's all so overwhelming. But, my entire family has made the decision to go gluten free with my youngest daughter. So we are going to be a large support system for each other! Thank you for all of your help, I'm sure I will be back many times, not only to read and get advice but to ask questions!
What a great family. It is wonderful that you have such a good support system. I hope she is feeling better soon and you may find the rest of the family healthier also.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
#6
nora_n
- Advanced Community Member
-
- Group: Advanced Members
- Posts: 1,328
- Joined: 16-January 07
Posted 14 November 2009 - 12:49 PM
Sometimes we find that the wrong tests were ordered, what tests were done?
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)
#7
GottaSki
- Advanced Community Member
-
- Group: Advanced Members
- Posts: 354
- Joined: 13-March 09
Posted 14 November 2009 - 01:44 PM
"I can't help but to be relieved yet disheartend at the same time. I just knew that we were on to something. Her symptoms were fitting celiac better than anything else that I had seen."
Many Celiacs have negative blood and endoscopy.
My tTG IgA was barely positive...but with symptoms my Celiac Doctor went ahead with endo - major damage and celiac damage confirmed in all biopsies taken.
Meanwhile all of my kids have various symptoms that could be celiac -- all have had negative blood -- two kids and one grandkid have all had positive results from gluten-free diet. More recently I was tested for celiac genes - turns out I have a pair of DQ2 which means all of my offspring have the gene. They may never be diagnosed, but will likely remain gluten-free as minor glutenings have already proved the benefit to them.
Welcome and Good Luck to you!
Many Celiacs have negative blood and endoscopy.
My tTG IgA was barely positive...but with symptoms my Celiac Doctor went ahead with endo - major damage and celiac damage confirmed in all biopsies taken.
Meanwhile all of my kids have various symptoms that could be celiac -- all have had negative blood -- two kids and one grandkid have all had positive results from gluten-free diet. More recently I was tested for celiac genes - turns out I have a pair of DQ2 which means all of my offspring have the gene. They may never be diagnosed, but will likely remain gluten-free as minor glutenings have already proved the benefit to them.
Welcome and Good Luck to you!
-Lisa
3/26/09 gluten-free - celiac confirmed from tTG IgA 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improved health for a few months -- then substantial deterioration (maybe one good hour per day for ~17 months)
8/10/11 - Started Elimination Diet for Autoimmune Disease
1/1/12 - Tomato, Pepper, Corn, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Seed, Shellfish and Gluten FREE
* Healthier than ever in my life. Didn't know how sick I really was until I removed all possible food intolerance *
"This is your life, are you who you want to be?" ~switchfoot
3/26/09 gluten-free - celiac confirmed from tTG IgA 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improved health for a few months -- then substantial deterioration (maybe one good hour per day for ~17 months)
8/10/11 - Started Elimination Diet for Autoimmune Disease
1/1/12 - Tomato, Pepper, Corn, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Seed, Shellfish and Gluten FREE
* Healthier than ever in my life. Didn't know how sick I really was until I removed all possible food intolerance *
"This is your life, are you who you want to be?" ~switchfoot
#8
vaness80
- New Community Member
-
- Group: Members
- Posts: 5
- Joined: 09-November 09
Posted 14 November 2009 - 06:18 PM
This may sound horrible, but I'm not sure what tests were done. I plan on getting the results from my doctor so I can see for myself what it all says....even if I won't be able to translate the jargon! I have a question about something though.....my daughter is now on day two of the gluten free diet....(almost free) yesterday, her babysitter was trying to fix her something that she could have for lunch...she was going through in her mind no buns, etc...then she remembered that she could have chicken...but had forgotten about the breading on the chicken nuggets that she gave my daughter....I went to pick her up and she had a bad migrain....I got her home and she vomitted. she is not sick. today she is fine...could this be from getting gluten? so soon after starting the diet, because I really didn't think that all of the gluten would be out of her system so soon...or maybe it's not and this was just an effect of having gluten?? does it make sense?
#9
RollingAlong
- Advanced Community Member
-
- Group: Advanced Members
- Posts: 238
- Joined: 06-July 08
Posted 14 November 2009 - 07:44 PM
vaness80, on Nov 14 2009, 06:18 PM, said:
This may sound horrible, but I'm not sure what tests were done. I plan on getting the results from my doctor so I can see for myself what it all says....even if I won't be able to translate the jargon! I have a question about something though.....my daughter is now on day two of the gluten free diet....(almost free) yesterday, her babysitter was trying to fix her something that she could have for lunch...she was going through in her mind no buns, etc...then she remembered that she could have chicken...but had forgotten about the breading on the chicken nuggets that she gave my daughter....I went to pick her up and she had a bad migrain....I got her home and she vomitted. she is not sick. today she is fine...could this be from getting gluten? so soon after starting the diet, because I really didn't think that all of the gluten would be out of her system so soon...or maybe it's not and this was just an effect of having gluten?? does it make sense?
Many people report weird reactions to all sorts of things when they are first on the diet. This is considered normal and indicates that things are healing up. Leter, you may see a more consistent pattern to reactions. If you wouldn't mind keeping us posted, I would be interested to know if other family members see any changes, particularly postive ones, from adopting the diet.
#10
vaness80
- New Community Member
-
- Group: Members
- Posts: 5
- Joined: 09-November 09
Posted 15 November 2009 - 01:22 AM
I will definitely be keeping everyone posted. I'm hopeful that this will be what's going on with her, and it really can't harm the rest of us to try it out too! I'm on this forum as much as I can be trying to read up and find recipes, advice, etc. Thanks to you all who have been helping me along this new journey!!
Share this topic:
Page 1 of 1
