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Ursa Major

Sent Susie's Test Kit Back To Enterolab Today

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Well, I finally got Susie to give her 'samples', and sent the package to Enterolab by FedEx today. She has been too sick for school at least twice a week for the longest time. If she goes to school at all, she is usually late, because she is so fatigued and dizzy in the mornings, that she is so slow getting ready, that even two hours are usually not enough.

Today she was sick again with tonsillitis (which has become chronic). She failed all of her classes last semester, and is not doing well in this one, either. It is very frustrating. And she is one of the smartest kids I know.

She refuses to try the gluten-free diet without 'proof' that she needs to be on it. She had a blood test done a year ago which came back negative (one number a high negative), which gives her the excuse to not even try the gluten-free diet, claiming she is fine. Obviously, she isn't fine at all.

So, needing to know what is wrong with her, I hope that the tests will come back positive. Because then I'll know what to do to make her well again. She was such a healthy kid when little!

The situation here at home has gone to where she needs to get away from her dad, as he drives her out of her mind (me too, but that's another story). So, she is going to move to live with her older sister's family for the new term in February. She lives a four and a half hour drive away with her husband and two little kids (Susie is holding the younger one in my avatar).

Since they eat mostly Gluten-free Casein-free (and the older child strictly so), it would work well diet wise, too.

Anyway, I'll post the test results when I get them.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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Hi, my name is Susi (just like your dd's) and I'm german like you. Mu dd's samples has been gone to EnteroLab aobut two weeks ago, I"m hoping to latest by the end of the weekend to get the results for my daughter, I had ordered a Malnutrition Stooltest on her! I hope you get the results you need to hel your dd, can't wait to hear more!\

Nig hugs, and you guys hang in there!

Well, I finally got Susie to give her 'samples', and sent the package to Enterolab by FedEx today. She has been too sick for school at least twice a week for the longest time. If she goes to school at all, she is usually late, because she is so fatigued and dizzy in the mornings, that she is so slow getting ready, that even two hours are usually not enough.

Today she was sick again with tonsillitis (which has become chronic). She failed all of her classes last semester, and is not doing well in this one, either. It is very frustrating. And she is one of the smartest kids I know.

She refuses to try the gluten-free diet without 'proof' that she needs to be on it. She had a blood test done a year ago which came back negative (one number a high negative), which gives her the excuse to not even try the gluten-free diet, claiming she is fine. Obviously, she isn't fine at all.

So, needing to know what is wrong with her, I hope that the tests will come back positive. Because then I'll know what to do to make her well again. She was such a healthy kid when little!

The situation here at home has gone to where she needs to get away from her dad, as he drives her out of her mind (me too, but that's another story). So, she is going to move to live with her older sister's family for the new term in February. She lives a four and a half hour drive away with her husband and two little kids (Susie is holding the younger one in my avatar).

Since they eat mostly Gluten-free Casein-free (and the older child strictly so), it would work well diet wise, too.

Anyway, I'll post the test results when I get them.


Susi with Shayden and Brandy

Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units

Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units

Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

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Ursa,

I hope you get the results you need. With most of the family doing better gluten free, I would be surprised if she didn't come back with elevated numbers.

I'm glad to hear she'll be able to move in with her older sister. Hopefully that will help her too since she won't be able to get much gluten if she still refuses the diet.

I'll be waiting for you to post her results when you get them.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I'm new here, but very interested in the entero labs tests so I'll be interested to hear what they find. I'll be doing a search of stories here from people who have used it. Hope it makes things better for her.

Jennifer


Jennifer, gluten free on and off since 2005, best I can remember sx started 2007, tTG of 4 1/13,

gallbladder out 2/13, scope 5/13 showing inconclusive damage to stomach and intestines,

tTG of 5 6/13, dx with non-Celiac Gluten Sensitivity or maybe pre-Celiac, gluten free since 6/13,

appointment soon for second opinion

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Hi! I'm fairly new to this board so forgive me if I ask questions that you have already told the answers to.

My son has ulcerative colitis and he too feels very fatigued in the morning and has dizzy smells also. Has your daughter been scoped to check for that? My son too has missed many days of school. He is now a Senior but when he was a freshman & sophomore he missed around 80 days each year. And many days he did go in only for half days. And unfortunately this year is not all that great for attendance either. He failed a couple of his subjects but made them up last year. It was a very tough year with lots of homework but he got through it. He has an IEP so that does help. Does Susie have an IEP or a 504 plan? That would help her out alot if she did.

Hope you get the answers you need and that she starts to feel better soon.

Take care :) !

Virginia

son 18 UC/EE & IBS, daughter 13 Celiac

Well, I finally got Susie to give her 'samples', and sent the package to Enterolab by FedEx today. She has been too sick for school at least twice a week for the longest time. If she goes to school at all, she is usually late, because she is so fatigued and dizzy in the mornings, that she is so slow getting ready, that even two hours are usually not enough.

Today she was sick again with tonsillitis (which has become chronic). She failed all of her classes last semester, and is not doing well in this one, either. It is very frustrating. And she is one of the smartest kids I know.

She refuses to try the gluten-free diet without 'proof' that she needs to be on it. She had a blood test done a year ago which came back negative (one number a high negative), which gives her the excuse to not even try the gluten-free diet, claiming she is fine. Obviously, she isn't fine at all.

So, needing to know what is wrong with her, I hope that the tests will come back positive. Because then I'll know what to do to make her well again. She was such a healthy kid when little!

The situation here at home has gone to where she needs to get away from her dad, as he drives her out of her mind (me too, but that's another story). So, she is going to move to live with her older sister's family for the new term in February. She lives a four and a half hour drive away with her husband and two little kids (Susie is holding the younger one in my avatar).

Since they eat mostly Gluten-free Casein-free (and the older child strictly so), it would work well diet wise, too.

Anyway, I'll post the test results when I get them.

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I'll be waiting to hear the results, Ursa :)

I also wouldn't be surprised if she comes back positive. If so, her new living arrangement sounds ideal. I'm sure it will be hard for you to have her go, though.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Hi! I'm fairly new to this board so forgive me if I ask questions that you have already told the answers to.

My son has ulcerative colitis and he too feels very fatigued in the morning and has dizzy smells also. Has your daughter been scoped to check for that? My son too has missed many days of school. He is now a Senior but when he was a freshman & sophomore he missed around 80 days each year. And many days he did go in only for half days. And unfortunately this year is not all that great for attendance either. He failed a couple of his subjects but made them up last year. It was a very tough year with lots of homework but he got through it. He has an IEP so that does help. Does Susie have an IEP or a 504 plan? That would help her out alot if she did.

Hope you get the answers you need and that she starts to feel better soon.

Take care :) !

Virginia

son 18 UC/EE & IBS, daughter 13 Celiac

Virginia, do you know that a gluten-free diet is VERY helpful to people suffering from ulcerative colitis? It could help your son tremendously to also be on a gluten-free diet.

I know that Susie could have other problems. But she is the worst one for any kind of testing, as she faints even when having some blood drawn. I am glad she finally gave her stool sample and did the cheek swab, after having the kit for a month, with new excuses for not doing it all that time. Because she doesn't want to know if she has celiac disease, as she doesn't want to give up bread.

If the tests come back negative, I will certainly keep looking, as I just need to figure out what is wrong with her.

Thanks Susi, Andrea, Jennifer and Patti for your encouraging words. I got the e-mail confirmation from FedEx of the box arriving at Enterolab today. Now all I can do is wait. I'll let you know what the results are when I get them.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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As someone who doesn't have to be gluten-free but I try to eat w/ Evan from time to time when it's something we'll both eat, I've found some great gluten-free bread mixes out there. I actually like them! :huh: It's hard to be gluten-free obviously, but I'm finding more and more subs for Evan. His new fave is Kinnickinick chocolate covered donuts.


Jennifer, gluten free on and off since 2005, best I can remember sx started 2007, tTG of 4 1/13,

gallbladder out 2/13, scope 5/13 showing inconclusive damage to stomach and intestines,

tTG of 5 6/13, dx with non-Celiac Gluten Sensitivity or maybe pre-Celiac, gluten free since 6/13,

appointment soon for second opinion

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