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Finally Making The Connection


MRM

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MRM Apprentice

hi everyone. i've been lurking for a few weeks and have learned so much from reading everyone else's experiences. since there's not an introduction board i guess this is the best place to start.

i suspect i've had life long issues with gluten/wheat. as a child i had chronic stomach aches. i spent a few years bouncing around from doctor to doctor and never finding the cause of my pain. i even had a trip to the ER with no known cause for my pain. by the time i was in second grade i was on Zantac daily. it didn't really help and i believe i eventually just got used to the pain. other signs i remember from my childhood include craving/eating dirt, reflux, severe dark circles aka "allergy shiners", keratosis pilaris, behavioral problems and chronic headaches. i would often wake in the middle of the night with severe headaches as a young child. my mother knew something was off and tried taking me off dairy. she had the right idea but the wrong trigger. i've also had chest pain and palpitations all my life. again, i've seen many doctors and none have found anything wrong with me.

it wasn't until about 2 years ago that i learned about Celiac Disease. my daughter was born in July 07. she had eczema and GI issues and under the guidance of my naturopath i started an elimination diet for her and i(i was breastfeeding at the time). we were off the top 8 allergens which included wheat/gluten. despite have a young baby and working full time i had never felt better in my life. about a year later we moved across country on very short notice i fell off the diet wagon. about 6 months later we had my daughter tested via IgG testing because we were still having issues. she showed a mild sensitivity to wheat but not gluten. we(daughter, son and i) all went back off wheat/gluten. again i felt great. i wasn't bloated every night, my allergies were tolerable. i didn't have near daily headaches. it was great but eventually we went back to eating wheat/gluten and have been for many months.

fast forward to this month. my son(age 6) has been having some stomach issues since he started school in the fall. this also happens to be when we started eating wheat again. we just had some stool samples sent out for him through our doctor. i'm not sure what they're screening for but our doctor knows i'm getting ready to take us all of gluten again. he's very petite for his age and has always been under the 25% for height and weight. he also has behavioral problems nearly identical to mine and allergy shiners. i will be asking to have him screened for celiac disease in the very near future.

while gearing up to go gluten free i've been able to avoid gluten for days at a time and have noticed that i react to wheat/gluten very quickly when i do have some. i get a headache almost instantly, waves of pressure in my head and sinuses and often get heart palpitations. i also have some severe fatigue and can barely get through the day without taking a nap with my daughter despite 7-9 hours of sleep at night. in the last month i've had allergy testing, both skin and blood, and a Celiac blood test. allergy testing was negative for wheat and the Celiac testing showed a reaction but within the normal levels. i guess my next step is to push for more blood work and a biopsy before i kick full swing into our gluten free diet. hopefully i will have some answers soon. thanks for reading all this.


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      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
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