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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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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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