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Levels Of Celiac?


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22 replies to this topic

#16 Lisa

 
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Posted 25 May 2012 - 05:57 PM

No one offended me. I don't mean for it to sound that way. I am just trying to put what the doctors are telling me and what people here are saying and sometimes they don't match. The endo tested her for celiacs at 7 and it was negative and they told me she was fine. I didn't change her diet. Maybe it makes me feel guilty that I didn't when you guys say that she did have celiac first. I had never even heard the term before and when the test came back negative, I thought we were home free. I do carry a lot of guilt around about everything!

My daughters GI doctor looked straight at my husband and said "Get tested immediatly." He has zero of the normal celiac issues but he got tested his Ttg was 3. (normal) Mine was 2. Not one single sign of celiac in our blood. But, we both carry the genes. He is DQ2 and DQ8 and I know I have at least one DQ2 because our other daughter is double DQ2. We know that at anytime, we could become celiac. And my daughter shares the "DQ2 and DQ8" which is linked to late onset type 1 diabetes. DH got it at 18. So we will always have to watch for that. I am hoping that gluten free will make that not show up! I feel like I am constantly waiting for the other shoe to drop.

In reference to you original post:
http://www.glutenfre...sano_letter.pdf
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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#17 1974girl

 
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Posted 25 May 2012 - 07:09 PM

In reference to you original post:
http://www.glutenfre...sano_letter.pdf


Thanks Lisa-very informative article.If they could detect damage after 50mg on the average person, then 4 slices of bread seems overkill. I guess they just want to make sure like the other person says. The support group leader told me that "I pumped my son full of it so the damage would be evident and we wouldn't have to keep doing this (biopsies)." I guess that makes sense. On a second point to that article...I hope they don't lower the standards now to below 20ppm. It seems like they'd just quit making gluten free food if they make regulations that tight. I had never thought of that.
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#18 Lisa

 
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Posted 25 May 2012 - 07:16 PM

Thanks Lisa-very informative article.If they could detect damage after 50mg on the average person, then 4 slices of bread seems overkill. I guess they just want to make sure like the other person says. The support group leader told me that "I pumped my son full of it so the damage would be evident and we wouldn't have to keep doing this (biopsies)." I guess that makes sense. On a second point to that article...I hope they don't lower the standards now to below 20ppm. It seems like they'd just quit making gluten free food if they make regulations that tight. I had never thought of that.

:) Progress is good. As slow as it seems, I'm pleased.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#19 beachbirdie

 
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Posted 25 May 2012 - 08:02 PM

Oh, and my dd has hashimotos! She has had it for 4 years. They tested for celiac at that time and it was negative so I believe she had Hashi's first. I have heard (not sure if it is true) but that your second auto-immune disease will not be as strong sometimes. She stopped growing with Hashis for about a year before they figured it out. Maybe that is why she only has "simplification" at her biopsy. Technically, some doctors wouldn't even call it celiac because it was just blunting and not total villi destruction. Thankfully, our doctor took genes and blood into consideration. We got a 2nd opinion just in case and she also said consider it celiac. I wish all doctors were that way!



No one offended me. I don't mean for it to sound that way. I am just trying to put what the doctors are telling me and what people here are saying and sometimes they don't match. The endo tested her for celiacs at 7 and it was negative and they told me she was fine. I didn't change her diet. Maybe it makes me feel guilty that I didn't when you guys say that she did have celiac first. I had never even heard the term before and when the test came back negative, I thought we were home free. I do carry a lot of guilt around about everything!

My daughters GI doctor looked straight at my husband and said "Get tested immediatly." He has zero of the normal celiac issues but he got tested his Ttg was 3. (normal) Mine was 2. Not one single sign of celiac in our blood. But, we both carry the genes. He is DQ2 and DQ8 and I know I have at least one DQ2 because our other daughter is double DQ2. We know that at anytime, we could become celiac. And my daughter shares the "DQ2 and DQ8" which is linked to late onset type 1 diabetes. DH got it at 18. So we will always have to watch for that. I am hoping that gluten free will make that not show up! I feel like I am constantly waiting for the other shoe to drop.


Don't punish yourself! You have nothing to feel guilty for. You have been doing the best you could based on what so-called "experts" have told you. Most of us have been brought up to trust doctors, and it takes a lot of hard work to get to a point of understanding things for yourself. Thankfully you've found a great place (here!) to learn from the knowledge and experience of people who have been dealing with this for a long time.

I am glad your daughter's doc was able to allow your daughter a diagnosis before she got terribly ill. That is rare.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#20 ravenwoodglass

 
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Posted 26 May 2012 - 05:44 AM

My daughters GI doctor looked straight at my husband and said "Get tested immediatly." He has zero of the normal celiac issues but he got tested his Ttg was 3. (normal) Mine was 2. Not one single sign of celiac in our blood. But, we both carry the genes. He is DQ2 and DQ8 and I know I have at least one DQ2 because our other daughter is double DQ2. We know that at anytime, we could become celiac. And my daughter shares the "DQ2 and DQ8" which is linked to late onset type 1 diabetes. DH got it at 18. So we will always have to watch for that. I am hoping that gluten free will make that not show up! I feel like I am constantly waiting for the other shoe to drop.


If the only test they ran was the TtG then you should ask your GP to do a full panel.
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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)

#21 cindylou7

 
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Posted 26 May 2012 - 02:35 PM

What should I do next? I recently had blood work to check for celiac and the doctor said that the workup was all within "normal range" but there was something that could indicate a problem. Dx with nervous stomach in my teens, IBS in my twenties, constant anemia, leukopenia, chronic skin rash that was dx as shingles with regular outbreaks on face, in nasal cavity, and arm. Recently had a hysterectomy after chronic bloating and distention (mother died at my age from gynological cancers)they found cysts and endomyosis but no cancer. Endoscope and colonoscopy came back with GERD and peptic stomach, but there was no biopsy. I discovered the gluten connection on my own and I am trying to find help and an accurate diagnosis. My question is should I go to a dermatologist for a biopsy next or seek a professional with advanced knowledge of celiac disease. My last Dr said that since i respond to GFD I should just follow that, but what about family members. My father and one of my sons have digestive issues too.
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“Worry is itself an illness, since worry is an accusation against Divine Wisdom, a criticism of Divine Mercy"

#22 beachbirdie

 
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Posted 26 May 2012 - 05:18 PM

What should I do next? I recently had blood work to check for celiac and the doctor said that the workup was all within "normal range" but there was something that could indicate a problem. Dx with nervous stomach in my teens, IBS in my twenties, constant anemia, leukopenia, chronic skin rash that was dx as shingles with regular outbreaks on face, in nasal cavity, and arm. Recently had a hysterectomy after chronic bloating and distention (mother died at my age from gynological cancers)they found cysts and endomyosis but no cancer. Endoscope and colonoscopy came back with GERD and peptic stomach, but there was no biopsy. I discovered the gluten connection on my own and I am trying to find help and an accurate diagnosis. My question is should I go to a dermatologist for a biopsy next or seek a professional with advanced knowledge of celiac disease. My last Dr said that since i respond to GFD I should just follow that, but what about family members. My father and one of my sons have digestive issues too.


Hi Cindylou7. Welcome!

First, get copies of your blood results and see just what the doctor was looking at. If he saw "something" that could indicate a problem, you need to know what that is!

If you post your results here, in a new thread, more people can help you. They may not have done a full panel, they may be interpreting "marginal" results as "okay".
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#23 MitziG

 
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Posted 27 May 2012 - 03:37 AM

The important reason to avoid cc, is because you want to "turn off" the immune response that is celiac. An active autoimmune response means your body thinks it is under seige, all the time.

Now, a teeny bit of gluten may or may not make you sick, but it WILL put the immune system on high alert again. Continual exposure to teeny bits of gluten means you never are able to turn that "alert system" off.

An active autoimmune disease is a dangerous thing.

Unfortunately for those testing, an active autoimmune response is not easily detected in blood. Its like looking for a speck of e coli in a bucket of water. Eating four slices of bread a day means the bucket will start to be flooded with "specks"- and then they are more likely to show up on a blood test.

So, while it is great to not be sick, the vomiting and diarrhea that some of us get from gluten exposure is not really the most important thing to avoid (though it certainly feels the most important!) The most important thing is stop the immune response that triggers it in the first place!

Hope this clears things up.
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