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Positive Bloods But Negative Gene Test?


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20 replies to this topic

#16 MitziG

 
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Posted 07 May 2012 - 04:19 AM

Deano. If you have been dx as celiac, the answer is no. No gluten. Ever. For the rest of your life. Even if you have no visible reaction to it, your immune system knows it is there and it will begin attacking your body. If you eat even a tiny bit of gluten, your immune system will kick into overdrive for at least the next 3 months. You will set yourself up for many more problems, including other autoimmune disorders and cancer, if you cheat.

You have been handed the cure- a 100% gluten free diet. Anything less than 100% and you WILL have ative celiac disease and you WILL end up much worse off than you were. Damage may be permanent.

I'm sorry if this sounds harsh. But when people do not take my dietary needs seriously because they "have a friend/uncle/cousin" with celiac disease who can eat "a little bit of gluten and is just fine" it makes my life very difficult.

You have celiac disease. If you are going to cheat, even a little, you might as well just be eating gluten all the time. There are more important things then really good pizza. Find them.
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#17 MitziG

 
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Posted 07 May 2012 - 04:21 AM

Oh, and Meg123- you have celiac disease. Your doctors are clueless. Whatever the biopsy shows, do not let them convince you otherwise!
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#18 Nay44

 
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Posted 07 May 2012 - 07:48 AM

Can anyone help with genetic test results:

DQ Alpha 1: 05:01,05
DQ Beta 1: 02:01,03

What does this mean?

Had positive blood tests of Ttg. Have fatigue, slightly low on iron but iron supplements bring it up, bloating after eating. No real other sypmtoms. Not deficent in B-12 or Vitman D on blood work. Had scope and saw scalloping of the 2nd and 3rd duodenum. Biposy results have not come back yet. Had all three kids tested and all were negative.. they are 7,12,and 14.
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#19 frieze

 
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Posted 07 May 2012 - 08:09 AM

Can anyone help with genetic test results:

DQ Alpha 1: 05:01,05
DQ Beta 1: 02:01,03

What does this mean?

Had positive blood tests of Ttg. Have fatigue, slightly low on iron but iron supplements bring it up, bloating after eating. No real other sypmtoms. Not deficent in B-12 or Vitman D on blood work. Had scope and saw scalloping of the 2nd and 3rd duodenum. Biposy results have not come back yet. Had all three kids tested and all were negative.. they are 7,12,and 14.

posting your lab results would be good....sometimes docs say "normal", when they are not.
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#20 tom

 
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Posted 07 May 2012 - 02:12 PM

Can I ask a question? I'm new to cealiac and am now gluten free. I feel very much better for it too. I was not one of the really bad cases like vomiting after a biscuit but I became malnourished. Do you think I could have like a Nan Bread or a Pizza once a month and get away with it or would that damage the villi?

For a few years in the 90s, I didn't know better & was thinking what I could "get away with". There's a lot more at stake than just the villi. Celiac can affect every system in the body.
I think my health is affected to this day by that practice way back when. Symptoms can creep up so slowly they can be attributed to such non-alarming things as aging, instead of the occasional mostly non-symptomatic gluten.

Any celiac not 100% gluten-free is taking a risk bigger than they know, imho.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#21 DeanoGHPC

 
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Posted 10 May 2012 - 07:54 AM

For a few years in the 90s, I didn't know better & was thinking what I could "get away with". There's a lot more at stake than just the villi. Celiac can affect every system in the body.
I think my health is affected to this day by that practice way back when. Symptoms can creep up so slowly they can be attributed to such non-alarming things as aging, instead of the occasional mostly non-symptomatic gluten.

Any celiac not 100% gluten-free is taking a risk bigger than they know, imho.


I've seen my own GP. Now we having the other Antigen test. What other one. I thought I'd just had it. Get back to you when I know more.
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