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My Mom


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6 replies to this topic

#1 NickMcKinnis

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Posted 08 June 2012 - 03:01 PM

My mom has been suffering from all kinds of problems for years. She has been diagnosed with Fibromyalgia and Bipolar disorder, Afterwards I was diagnosed with Celiac and so she got herself tested for it as well. Well, the blood test came back negative but I still feel very strongly that she has it as it would explain not only the problems she has been diagnosed for but also the undiagnosed. Is it possible that it was a false negative? My uncle after hearing that I had gone gluten free also went gluten free (without seeing a doctor) and has claimed it has made him feel much better. It all just seems too convenient, anyone have thoughts on this?
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#2 squirmingitch

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Posted 08 June 2012 - 03:33 PM

Nick, does your mom live in the same town as you & did she see the same doc for the blood tests? Often the full celiac panel is not ordered. There should be 6. She could have had a false negative or a full panel may not have been ordered. Can you get a copy of the test results along with ref. ranges & post them here?
Even if your mom saw the same doc as you -- did you get a full panel or did you just get lucky & get a positive from less than the full panel? Catch what I'm saying?


Well, as to convenient ---- one in 133 people has celiac disease. And look at my sig. line --- how about 2 of us in the same house not only with celiac but presenting with dh (dermatitis herpetiformis - the celiac rash)?

And welcome to the board Nick!
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#3 NickMcKinnis

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Posted 08 June 2012 - 03:44 PM

Nick, does your mom live in the same town as you & did she see the same doc for the blood tests? Often the full celiac panel is not ordered. There should be 6. She could have had a false negative or a full panel may not have been ordered. Can you get a copy of the test results along with ref. ranges & post them here?
Even if your mom saw the same doc as you -- did you get a full panel or did you just get lucky & get a positive from less than the full panel? Catch what I'm saying?


Well, as to convenient ---- one in 133 people has celiac disease. And look at my sig. line --- how about 2 of us in the same house not only with celiac but presenting with dh (dermatitis herpetiformis - the celiac rash)?

And welcome to the board Nick!

Wow thanks, She did not see the same doctor, and I am not sure if the full panel was ordered for her or myself. Regarding her test results, I will ask her if she still has them. She was tested a few years back, but perhaps she can get a copy from her doctor. When she was tested negative, my knowledge of the disease and its symptoms was much less than it is now so I dismissed my suspicions at the time. Thank you for your response!
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#4 squirmingitch

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Posted 08 June 2012 - 04:13 PM

Wow thanks, She did not see the same doctor, and I am not sure if the full panel was ordered for her or myself. Regarding her test results, I will ask her if she still has them. She was tested a few years back, but perhaps she can get a copy from her doctor. When she was tested negative, my knowledge of the disease and its symptoms was much less than it is now so I dismissed my suspicions at the time. Thank you for your response!


Ohhhhh, so she wasn't tested AFTER you? She was tested a few years ago? She needs to be retested & with today's tests. Okay, here is the full panel TODAY:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


The DGP test was added recently to the full panel.


So she needs to make SURE the doc runs ALL those tests on her.


AND she needs to inform her doc that HER SON recently tested positive & was diagnosed celiac. That should make a big diff. to her doc & should make him not argue with her about re-testing her.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#5 NickMcKinnis

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Posted 08 June 2012 - 04:19 PM

Ohhhhh, so she wasn't tested AFTER you? She was tested a few years ago? She needs to be retested & with today's tests. Okay, here is the full panel TODAY:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


The DGP test was added recently to the full panel.


So she needs to make SURE the doc runs ALL those tests on her.


AND she needs to inform her doc that HER SON recently tested positive & was diagnosed celiac. That should make a big diff. to her doc & should make him not argue with her about re-testing her.

I'm sorry I must have caused a miscommunication, she was tested after me. I tested positive around eight years ago. She tested negative around five years ago.
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#6 squirmingitch

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Posted 08 June 2012 - 04:28 PM

Ah, I see. So we're back to where we were before. If it was 5 yrs. ago though then she certainly didn't get the Deamidated Gliadin Peptide (DGP) IgA and IgG test b/c that has recently been added to the full panel. And if I were taking bets, I'd bet she didn't get the full panel even w/o the new DGP.
Even if she doesn't still have a copy of the tests she should be able to get another copy from her doc. Tell her she needs to make sure that it has the ref, ranges on it also. Then post it here. We have members who are very good at interpreting those test results.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#7 Roda

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Posted 08 June 2012 - 07:58 PM

She may have been negative 5 years ago and could end up with a positive test now. And even if she doesn't test positive gluten still could be a problem. My youngest son tested negative after I was diagnosed. Two years later he had positive blood work.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.



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