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Declaring It Offical.......
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Ok so I have been hesitant to say (even though all testing is done) that I am gluten intolerant possibly even have Celiac. Well after emailing back and forth with Dr Vikki Petersen (author of the Gluten Effect) I can offically say I have a very serious autoimmune gluten intolerance. I am double DQ1 with Lichen Planus, Iron deficeincy anemia, Severe Vit D deficeincy, Osteomalacia, RLS, GERD, PCOS, high blood pressure, high cholesterol, elevated liver enzymes, severe pitting edema, mild tricuspid regurge.

I have been Gluten Free for 2 weeks now and on vitamins. I can already see a major difference in my energy levels and my muscle weakness is starting to get better. Instead of tolerating only 3 mins on my feet I made it through a 15 min trip to CVS today! I haven't gone shopping in over a month because I can barely walk from the house to the car. Granted I still have a LONG WAY TO GO but this is a fantastic start! :D SOOOOO SOOOO Happy!

Roxie

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Ok so I have been hesitant to say (even though all testing is done) that I am gluten intolerant possibly even have Celiac. Well after emailing back and forth with Dr Vikki Petersen (author of the Gluten Effect) I can offically say I have a very serious autoimmune gluten intolerance. I am double DQ1 with Lichen Planus, Iron deficeincy anemia, Severe Vit D deficeincy, Osteomalacia, RLS, GERD, PCOS, high blood pressure, high cholesterol, elevated liver enzymes, severe pitting edema, mild tricuspid regurge.

I have been Gluten Free for 2 weeks now and on vitamins. I can already see a major difference in my energy levels and my muscle weakness is starting to get better. Instead of tolerating only 3 mins on my feet I made it through a 15 min trip to CVS today! I haven't gone shopping in over a month because I can barely walk from the house to the car. Granted I still have a LONG WAY TO GO but this is a fantastic start! :D SOOOOO SOOOO Happy!

Roxie

I am very happy for you! May your healing be accomplished with great speed! :D

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Congratulations on a great start to fixing an unhealthy situation. I hope you continue to feel better. ;)

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I'm glad you've gotten more comfortable with your diagnosis. It's great to hear you're feeling better! B)

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Yay Roxie! So wonderful to hear you are now comfortable with your intolerance. And I'm very happy to hear you made it out to CVS today. It's a great start. Go Roxie!smile.gif

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Thank you everyone! I have to say I have been tempted a few times to go off track. Especially when they bring yummy goodies in to work. Then I thought about how much better I am feeling and wanting to be able to walk and play with my son and all thoughts of taking a bite go bye bye. ;) I still have a lot of work to do before my cruise next month wish me luck! :D

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    • I_would_widen_the_search_to_your_whole_environment.....Carefully_consider_what_else_was_different_when_you_felt_better.
    • Thanks a lot for your advice and the link. I will surely check upon GCED. But, doesn't a negative HTTG (can't do IgA ttg as IgA deficiency) result mean that I am not exposed to gluten ? 
    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
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