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powerofpositivethinking

Member Since 06 Jan 2013
Offline Last Active Jun 29 2014 08:40 AM
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#895181 Taking 15Yo For Tests Tomorrow!

Posted by powerofpositivethinking on 08 November 2013 - 03:26 AM

i think Nicole meant to say she needs to stay on gluten if they decide to do a biopsy.  Make sure your daughter stays on gluten until all testing is complete!

 

 

She may need to stay gluten-free after testing in case there is a follow-up endoscopic biopsy.

 

 

 

here's what I usually suggest testing wise

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

http://www.curecelia...or-to-diagnosis

 
 
good luck today!!
 
*EDIT: I'd suggest writing all symptoms down before going to the doctors.  That way if you get nervous, I do  :), you don't forget all your questions because you've got it all in front of you.

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#891688 Coupon Time!

Posted by powerofpositivethinking on 12 October 2013 - 08:32 AM

Here are some coupons found via Hip2Save.com 

 

$1 off a Glutenfreeda Product (this one I was able to print twice) http://bricks.coupon...c=VP&p=jNwzHChK

 

$2 off a Udi Product

http://www.hannaford...log/coupons.cmd

 

also if you use the ibotta app on your smartphone you can get $1 for a Udi's product too!

 

Happy shopping!


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#889467 New Here With A Couple Of Questions

Posted by powerofpositivethinking on 23 September 2013 - 06:19 PM

can't post much because of time, but since you're getting the endoscopy tomorrow...please, please have them take at least 6-8 samples from your small intestines.  For a lot of people, damage can only be seen through biopsy and not the naked eye.  Does anyone have any links to more detailed write-ups about biopsy procedures?  If you had lower total iga, it would be a good idea to get DGP igg and TTG igg run too.  Remember you must currently be consuming gluten for both the biopsy and blood tests.  

 

Good luck tomorrow!

 

PS- a lot of people around here say IBS stands for I Be Stumped.  Makes me laugh every time, and yes, it is just a catch all term because the doctor hasn't discovered the true problem.

 

 

 

 

I guess my last question is is IBS really a medical condition or is it just doctors way of saying we dont know whats wrong with you.


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#886340 Constantly Sick - Wondering If It's Celiac

Posted by powerofpositivethinking on 28 August 2013 - 04:33 PM

welcome!

 

Based on what you wrote above, I think it would be a smart idea to get tested.  You can request these blood tests from your primary doctor or GI.  You MUST actively be consuming gluten for these tests to have a chance at being accurate.

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Hope this helps!

 

edit:  my nails have always been incredibly flexible, but since going gluten free, they've gotten much stronger!  


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#884925 Desperate For Answers After Too Many Years

Posted by powerofpositivethinking on 19 August 2013 - 02:26 PM

welcome  :)

 

I think you should definitely get tested based on what you wrote above.  Remember in order for tests to be accurate you MUST be actively consuming gluten.  Here is a list of blood tests to request from your GP or GI:

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

http://www.worldgast..._long_FINAL.pdf

 
are you able to go to your GP and ask for these tests instead of waiting for your GI appointment?  also I suggest always getting copies of your test results.  You can post them here for others to comment.  good luck!

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#878933 Didn't See That One Coming :( Rice Dream

Posted by powerofpositivethinking on 10 July 2013 - 05:29 PM

I would have still been drinking Rice Dream and feeling terrible, if not for other's posts about the barley  :angry:

 

Here's what I finally got back from them...

 

"Thank you for taking the time to contact us regarding our Dream® Enriched Original Rice Dream.

We consider gluten to be in the following, barley, bulgur, couscous, durum, graham flour, kamut, malt , rye, semolina, spelt, triticale and any other types of wheat. We do not consider oat products to be gluten free due to the fact that studies are needed to determine the long- term safety of oat consumption. The issue of cross contamination with oat and wheat remains a concern in North America.

Consumer health and safety is our number one concern. We do not have lists of products that are specifically considered to be gluten free. Reading the label is the best way to check for the presence of ingredients which contain gluten. If gluten is a major ingredient, it will be specified in the ingredient list. For consumers concerned about the presence of trace amounts of gluten, we suggest avoiding products that include natural flavors or spices. 

Hain Celestial Group products that make a gluten-free claim will carry the triangular Gluten-Free symbol, be labeled gluten-free, or specify Gluten Free certification by GFCO. To learn more about the wide variety of gluten free foods we offer please visit www.glutenfreechoices.com. We hope you find the information, recipes and articles to be a useful resource.

The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. We recognize the serious nature of the allergen issue and we strive to minimize risk.

Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.

We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.

Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246Monday through Friday from 9AM - 7PM Eastern Time."


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#877097 Red Apple Lipstick

Posted by powerofpositivethinking on 28 June 2013 - 10:21 AM

got mine in the mail today!  I've avoided lipstick because of the nasty taste I would get if any got in my mouth.  Now I'm not saying I'm munching on the stick and that's why it gets in my mouth  :lol: but no bad taste since I've put it on my lips!  yay  :)


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#876332 Red Apple Lipstick

Posted by powerofpositivethinking on 24 June 2013 - 12:52 PM

I ordered Red! for when I'm feeling really adventurous, and Flirt With Me for more of an everyday look.  I've never been a big lipstick fan, but change can be a good thing!

I just ordered two more. Mauve Me is now my favorite lipstick color!


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#876293 Red Apple Lipstick

Posted by powerofpositivethinking on 24 June 2013 - 10:33 AM

Thanks for posting your review!

 

The Celiac Diva had a buy one get one deal on Red Apple Lipstick, and I was hesitant, but I think I'm going to try it based on what you said.  Thanks  :)

 

PS-Heres the BOGO link she had on facebook http://www.redapplelipstick.com/diva

 

 

I haven't been having any reactions to my current lipsticks by MAC, but I am trying to go completely gluten free in every aspect of my life, so I ordered two lipsticks from Red Apple Lipstick. Many of you recommended this company which makes gluten free and paraben free make up products. The lipstick colors are gorgeous! I got them today. I went back and ordered two glosses within five minutes of opening the lipstick package!

 

Thanks to those who recommended!


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#874039 Tests Say Celiac, But No Symptoms

Posted by powerofpositivethinking on 11 June 2013 - 05:12 PM

welcome aehills01  :)

 

I'm so glad you were able to figure out what was going on with your daughter!  ok don't take this the wrong way because I am far from perfect and don't want to sound self-righteous, but as a parent you have the chance to influence your children's lives every day.  that is an awesome opportunity, and I'm guessing your daughter wouldn't mind having a partner in crime ;)  I recently heard this great story that made me think of your statement above of not wanting to seem like a hypocrite to your daughter.  I'm pasting the story from this link http://interviewange...ve-cooperation/

 

There was a six-year old boy living in the same Indian community as Mahatma Gandhi.

This boy had a very strong sweet tooth.  He couldn’t resist sugar.

Because he was diabetic, the sugar created painful boils all over his body.

His parents took him to the doctor, who said the boy must avoid all sweets; otherwise, the ailment would not go away.

The parents nagged the boy every day to stop eating sugar, but this was a challenge the boy wasn’t willing to overcome.

In desperation, the boy’s mother came to Gandhi and asked if he could please convince her boy not to eat sweets.

Gandhi said, “Come back in 15 days and I’ll speak to him then.”

So the mother came back after 15 days.

Gandhi took her son aside and spoke to him for a few minutes.

The boy went home and immediately gave up sweets.

The mother was puzzled.

She asked Gandhi later, “Why did you ask us to come back after 15 days? And what miracle did you perform to get my son to quit eating sweets?”

Gandhi replied that it wasn’t a miracle.

Said Gandhi, “When your boy first came to me, I too had been eating sugar.”

He had told the boy that he couldn’t ask him to do something he, Gandhi, wasn’t willing to do himself.

 

 

 

you don't have symptoms, but you have silent celiac, which means even though you don't have symptoms, gluten is damaging your body.  travel this journey together with your daughter :) Have you gotten your nutrient levels tested?  Since those with celiac are often deficient in nutrients, I would suggest the following tests:

 

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

http://www.cureceliacdisease.org/archives/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis

 

let us know if you have any other questions!


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#873709 Not Sure What To Think - Just Got Blood Test Results

Posted by powerofpositivethinking on 10 June 2013 - 01:16 PM

here's a good Pub Med Abstract regarding AGA (they list it as antibodies against native gliadin) vs DGP:

http://www.ncbi.nlm....pubmed/20171961

 

that's frustrating that they won't test your total igA  <_< why don't doctors know if they use ttg iga they have to measure the total iga to make sure it's valid...argh

 

any chance that you take any type of PPI or acid suppressing drug?  they can lower B12.  however if you're getting enough of it, and you're still deficient in it, that indicates malabsorption.  the answer "some people are just B12 deficient," is a cop out IMO

 

the journal is a great idea  :)

 

keep us updated!

 

So, the doctor's office called me back on Friday to answer my questions. Regarding the Total Serum IgA, the nurse said the doctor never orders that test, because it's too specialized and only GIs should order it.

 

Regarding the AGA IgA/IgG vs the DGP IgA/IgG, she said they don't know anything about how sensitive the AGA tests are vs the DGP tests and that they would have to call the lab and ask them. Based on what the lab says, the doc will decide if she will order the DGP tests (but she will not order the Total Serum IgA).

 

I also asked what could be causing the B12 deficiency if it's not celiac (we know I'm eating enough of it and we've ruled out pernicious anemia). The nurse's response was "some people are just b12 deficient." That doesn't make sense to me. If I'm eating enough of it, and my levels are low, there must be a reason my body isn't absorbing it.

 

They haven't checked any of my other nutrient levels, such as iron, vitamin D, etc. I pointed that out to nurse and she said she would ask the doc about it.

 

So, I'm once again waiting for them to call me. In the mean time, I've started to keep a journal of what I eat and how I feel. I had some pretty bad GI issues over the weekend and spent most of yesterday laying on the couch not really feeling like doing anything. I don't know if this is all in my head, like confirmation bias - someone said the word "celiac" and now I'm viewing every little thing through that lense. Or if I really have been missing/writing off symptoms for a while and now I'm just more aware.


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#873239 Does My 9 Year Old Have To Be Scoped After Testing Positive On A Celiac Panel

Posted by powerofpositivethinking on 07 June 2013 - 02:28 PM

hi susan,

 

I know you've got a lot happening right now, but I would highly recommend this book in the future:

http://www.amazon.co...is good for you

 

hmmm with acid reflux, I was told to avoid NSAIDs.  if meloxican is an NSAID, and now he is on Prilosec, did he have stomach pain/reflux before the meloxican or was it brought on by that?  Just curious  :)


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#873107 But It's Not Gluten-Free!

Posted by powerofpositivethinking on 06 June 2013 - 06:40 PM

i'm one of those people who has always washed my hands...all. the. time.  pre-gluten free, and even more gluten free.  YUCK is right  :P

it's not okay to make people sick...and it's REALLY not okay to not change your gloves after changing garbage. YUCK.


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#872888 Celiac Blood Panel Done On My Mother

Posted by powerofpositivethinking on 05 June 2013 - 04:37 PM

sending you positive thoughts!!!  glad that you pushed for the celiac panel for your Mom :)  I know you have the next appointment scheduled, but is there any way you can get the results earlier since you all need some answers?  I hope so!


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#872374 Diagnosed Just Now

Posted by powerofpositivethinking on 03 June 2013 - 01:43 PM

welcome to the forum  :)

 

here is a research paper from the World Gastroenterology Organization on Celiac Guidelines.  Print a copy for your doctor as there is a lot of great information in it  :)

 

http://www.worldgast..._long_FINAL.pdf

 

A full celiac blood panel is:

DGP iga/igg

TTG iga/igg

EMA

Total iga serum

 

Thyroid Panel:

TSH

Free T3

Free T4

TPO antibodies

am I missing any??

 

Vitamins/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamins B-6 and B-12

Vitamins A, D, E, K

Magnesium

Zinc 

Copper


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