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Couldn't Take It Anymore!


whtswrongwithme32

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whtswrongwithme32 Apprentice

Hey there, I got so sick. Lost 20 lbs in 3 weeks . I decided to go off glueten for relief. After a a week and a half I started feeling a lot ( but not completely ) better. I decided to eat a bowl of frosted mini wheats thinking my gpa has celiac...this may all be in my head..plus i wouldn't mind having pizza again with out getting so sick (for days afterward)...within one hour I had nausea, pain, fatigue, I broke out with a rash on my back ( i use to always have that rash. didn't know it disappeared until it returned ..and three hours later had a migrane headache. I see the G.I. weds do G.I.'s believe in glueten intolerance should celiac come back negative? Will I be sent to a G.I.? Will they call it IBS? What do I do or say. I am nervous about the appointment. But since the doctors i keep seeing find "nothing. wrong " (eccxcept benign liver tumor) I think I figured that it is related to glueten or wheat somehow . I just couldn't keep feeling the way i was. Everyone is talking about my drastic weight loss...its embarrass ing when u were thin to begin with. but i can eat larger portions when no glueten is involved ..trying to eat some everday and hope blood work accuerately depicts what my body is saying . I. But it would. be nice not to have these issues. I am glad dairy does not adversely affect me tho.


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whtswrongwithme32 Apprentice

Actually 20 lbs in 10 weeks not three!

Fenrir Community Regular

Very well could be Celiac or could be a food allergy of some sort.

 

Make sure to ask you Dr.  to order the right labs, most GPs are not that familiar with Celiac disease and the appropriate labs:
 

The best tests out there right now are

 

Tissue Transglutaminase Antibodies (IGA):

TTG IGA is the most accepted first line screening tesst for Celiac, it is 98% specific for Celiac disease. So if it is positive(even weak positive) you have a 98% chance of having Celiac.

 

Deaminated gliadin peptide (DGP IgA and IgG):

DGP testing is much more sensative than TTG and there are many fewer false negatives than with the TTG. So, you should have this done to help make sure you don't come up false negative

 

Total IgA:

Total IgA needs to be done to show that you produce the correct antibodies because if you don't it can cause TTG tests to be false negative.

 

Basically if you have a positive TTG or GDP test you almost certainly have Celiac, though you will need a biopsy to confirm it.

 

 

If all of those come up negative you most likely don't have Celiac but there are a very small number of people who come up completely negative with a good total IgA that have it but it is very rare.

 

In any case, your GI specialist will likely suggest doing an EGD and Colonoscopy whether positive or negative  because clearly something is going on, be it celiac, colits,Crohn's....ect.

LauraTX Rising Star

The bottom line is that gluten intolerance is not cut and dry... if you feel better eating gluten free, and have exhausted all testing methods, then do what makes you feel better.  

BlessedMommy Rising Star

^Yes! What Laura said. 

Fenrir Community Regular

The bottom line is that gluten intolerance is not cut and dry... if you feel better eating gluten free, and have exhausted all testing methods, then do what makes you feel better.  

Yeah, no matter what the tests or Dr. says if you feel better without gluten, then do it!

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      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
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