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Am I Likely To Be Dx-Ed? Please Help!


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50 replies to this topic

#46 Justscared

 
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Posted 31 January 2014 - 09:31 AM

lolz - what? 

 

"it's not the h.i.v.,,,,"

 

sorry, i watch too many cartoons.........  ;)

 

I meant "CELIACS-CELIACS". :-) As in not just "gluten sensitive". Those with flattened villi on the biopsy, positive blood tests, etc.


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#47 nvsmom

 
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Posted 31 January 2014 - 09:55 AM

I meant "CELIACS-CELIACS". :-) As in not just "gluten sensitive". Those with flattened villi on the biopsy, positive blood tests, etc.

LOL

Those with a gluten sensitivity can be divided into two groups:

  1. Celiac disease - have tonnes of nasty symptoms and villi damage, some have dh (BTW, celiacs are people who have celiac or celiac disease)
  2. Non-celiac gluten intolerance/ sensitivity (NCGI or NCGS - terms are interchangeable) - haves tonnes of nasty symptoms. No villi damage or dh.

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#48 IrishHeart

 
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Posted 31 January 2014 - 03:01 PM

Making this a lot more complicated than it has to be. Let's cut to the chase.  :)

Everyone who has posted has given you rock- solid advice, but maybe if we summarize it....

 

(1) Have the celiac blood panel done now while you are consuming gluten because you actually can have Celiac without villous damage YET

and be positive on blood panels.

 

(2) Have the genetic test done. If it is positive for either of the genes associated (but NOT predictive of) celiac, it would give you more info.

 

OR

 

(3) Forget all that and just go G F and see if it helps. It's not the end of the world to dump gluten.

None of us are hungry and feeling deprived, I assure you. 

 

You obviously have symptoms that are indicative of  gluten intolerance and to be perfectly frank, you are driving yourself insane speculating endlessly and thinking all the worse case scenarios without enough information. This is unwise, hon.

 

And,you are not "pathetic" as you say Kindly help me, as I suffer from severe health anxiety (hypochondria) and for me, words like "acid reflux" spell "esophageal cancer in the future"; and Celiac spells "lymphoma in the future". 

 

I know I am pathetic - and this is why I am here begging for help. :-(

 

BUT you are "borrowing trouble" as my Gramma used to say and that's a waste of time and energy.

 

Since you raised the word "hypochondria" you should be aware that it is  one of the behavioral issues tied to gluten sensitivity.

 

Neurological Issues

  • Anxiety
  • Apathy
  • Bipolar disorder
  • Depression
  • Difficulty Making Friendships
  • Easy Frustration and Anger
  • Nervousness
  • Panic Attacks
  • Sense of Worthlessness
  • Overly Self-critical
  • Hysteria
  • Hypochondria

http://glutenfreewor...e/#.UuwpCTJ93vE

 

My best advice, IMHO...

make a decision and follow through with it and get out of the endless cycle of worrying what may or may not happen.

Best wishes.


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#49 Justscared

 
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Posted 03 February 2014 - 10:00 AM

Thanks everyone again. Just wanted to write an update -  my GP ordered the panel, so I had blood drawn this morning after eating cake and other gluetened things all week-end.

Now I will just be waiting ...it may take up to 2 weeks, but they said probably not that long.

 

Keep praying my GI was right - as he did not even want to do the blood panels.

 

 

 

Making this a lot more complicated than it has to be. Let's cut to the chase.  :)

Everyone who has posted has given you rock- solid advice, but maybe if we summarize it....

 

(1) Have the celiac blood panel done now while you are consuming gluten because you actually can have Celiac without villous damage YET

and be positive on blood panels.

 

(2) Have the genetic test done. If it is positive for either of the genes associated (but NOT predictive of) celiac, it would give you more info.

 

OR

 

(3) Forget all that and just go G F and see if it helps. It's not the end of the world to dump gluten.

None of us are hungry and feeling deprived, I assure you. 

 

You obviously have symptoms that are indicative of  gluten intolerance and to be perfectly frank, you are driving yourself insane speculating endlessly and thinking all the worse case scenarios without enough information. This is unwise, hon.

 

And,you are not "pathetic" as you say Kindly help me, as I suffer from severe health anxiety (hypochondria) and for me, words like "acid reflux" spell "esophageal cancer in the future"; and Celiac spells "lymphoma in the future". 

 

I know I am pathetic - and this is why I am here begging for help. :-(

 

BUT you are "borrowing trouble" as my Gramma used to say and that's a waste of time and energy.

 

Since you raised the word "hypochondria" you should be aware that it is  one of the behavioral issues tied to gluten sensitivity.

 

Neurological Issues

  • Anxiety
  • Apathy
  • Bipolar disorder
  • Depression
  • Difficulty Making Friendships
  • Easy Frustration and Anger
  • Nervousness
  • Panic Attacks
  • Sense of Worthlessness
  • Overly Self-critical
  • Hysteria
  • Hypochondria

http://glutenfreewor...e/#.UuwpCTJ93vE

 

My best advice, IMHO...

make a decision and follow through with it and get out of the endless cycle of worrying what may or may not happen.

Best wishes.


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#50 1desperateladysaved

 
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Posted 03 February 2014 - 07:33 PM

The final gold standard test (after antibodies) is to go 100% gluten free and see how it goes.  Keep track of symptoms to describe what happened to a doctor later if needed.  Endoscopy's sometime miss damage.  I also believe checking some nutrient levels could help determine how your digestion is working.  Vitamin B, iron, vitamin D, and magnesium might be low if the villi are damaged or you have celiac. 

 

D


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#51 Justscared

 
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Posted 05 February 2014 - 09:37 AM

 

Panel came back negative (results below). I guess I am now going to take the gluten out for the truly gold standard. It is amazing how many people without Celiac swear they feel so much better when completely off gluten. This has been quite the roller coaster - thank you so much everyone for your support. I did learn a lot - now if only I could figure out how to bake some really nice gluten-free cakes. 

 

 

Component Results Component Standard Range Your Value Gliadin IgA Ab 0 - 19 units 2 Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30 GLIADIN IGG AB 0 - 19 units 2 Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30 Tissue Transglutminase Ab,IgA 0 - 3 U/mL <2 Negative 0 - 3
Weak Positive 4 - 10
Positive >10
Tissue Transglutaminase (tTG) has been identified
as the endomysial antigen. Studies have demonstr-
ated that endomysial IgA antibodies have over 99%
specificity for gluten sensitive enteropathy. Tissue Transglutaminase Ab,IgG 0 - 5 U/mL <2 Negative 0 - 5
Weak Positive 6 - 9
Positive >9 Endomysial IgA, Ab Negative Negative IgA 91 - 414 mg/dL 194

 

 

The final gold standard test (after antibodies) is to go 100% gluten free and see how it goes.  Keep track of symptoms to describe what happened to a doctor later if needed.  Endoscopy's sometime miss damage.  I also believe checking some nutrient levels could help determine how your digestion is working.  Vitamin B, iron, vitamin D, and magnesium might be low if the villi are damaged or you have celiac. 

 

D


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