LauraB0927

Finally some good news - after an unexpected, shocker diagnosis on May 3, 2012, many dietitian appointments, 2 endoscopies, 1 colonoscopy, 1 capsule test, and a partridge in a pear tree later, I finally got the news from my GI doc that my TTG levels are within normal range and an intestinal biopsy confirmed that my villi have returned back to normal!!!  The good news seems surreal after so many bumps in the road...

 

I didnt write this to brag - rather to lend some support to those of you who may be struggling or thinking that things cant get better.  It hasn't been easy - and this is coming from a girl who lived off of chicken fingers, pizza, and macaroni and cheese for most of her life.  Yes, I had to change most of my lifestyle habits, and yes, there have been many accidental slip-ups, tears, and feelings of anger/frustration along the way.  But it DOES get better....thanks to everyone on this forum who have listened to me vent, provided support when I needed it, and helped me get on the road to being healthy.  I'll be sure to continue to return the favor where ever possible!! 

So I came on here to vent because most of my family can't (not that that they don't try to) understand what this is like. I'm 7 1/2 months into my gluten free lifestyle and I was over my future mother-in-law's house for Christmas today. She is wonderful and did everything in her power to make sure that the Christmas dinner was gluten free. At the end of the night she handed me a bag of home made snickerdoodle cookies to take back to my family and prefaced by saying that one pack was gluten free (for me and my sis) and the other was not. As I was watching people open presents I happily stuck my hand into the bag and pulled out a cookie. I was almost done with it when I realized that I had chosen a cookie from the gluten pack, and not the gluten free. Obviously panicked, I ran to the bathroom and spit out any trace that was still left in my mouth but the damage had been done - and I had tickets reserved and paid for to see Les Miserables later tonight. I had been waiting for this movie to come out for months and there was NO way that I would miss it now. Half way through the movie I was bloated to no end and the pain started. This is the first time since going gluten free that I had out right eaten gluten besides accidental trace amounts along the way.

I know I shouldn't continue to beat myself up about this - we all make mistakes right? But this was a huge mistake. I cant stop smacking myself in the head and saying "how could I have done that?" It was a rookie mistake and I'm so embarrassed inside. Now I'm timing all my symptoms so I can actually learn something from this. The heating pad is warming up now and the bottles of water are being chugged. I hope that tomorrow shows some signs of relief. At least Les Miserables was worth it...

Thanks for letting me vent....you guys are all awesome! Happy gluten-free Holidays to all!!!

I was diagnosed in May 2012 and just recently went back for my 6 month-ish follow up - the doc decided to run my Celiac panel again while he tested for my chief complaint of fatigue and increasing joint pain. I expected my TTG (was originally 100) to drop down to about 60 which I would have been very happy with given that I've had a few common rookie mistakes along the way. But the results came back and my TTG level was 13! I was shocked!! This has given me more motivation than ever to get those levels to an even better place and it let me know that I'm doing something right which is such a relief....I am going to ask for a copy of my results because they said my IgG and IgA levels were still high, so I'll post them on here because I'm a bit confused on how to interpret them.

The other shocking result is that my iron levels were fine - which surprised me because I was almost positive that it was the culprit in my increasing fatigue. I battled lowered iron levels since 2004. My vitamin levels are fine, thyroid is fine, so I'm not sure what else it could be. Any suggestions? I'm going to be getting a bone density scan on 10/29 which could (hopefully not) be the cause of my joint pain, and then I guess we'll take it from there.

I wanted to thank everyone on the forum for their suggestions, advice, tips, and unwavering support, not just for me but for all coming on here looking for some answers. It helped me so much and I completely attribute my healing to this site. I don't think it would have happened otherwise. Best wishes to everyone!!!

So I started NAET therapy at the recommendation of my dietician who is certified to practice it.  She wanted to see if it will clear up some of my other emerging sensitivities and thought I'd be a good candidate.  Not sure if it'll work but I'm trying to keep my mind open to see if I'll feel better.  Anyway, I decided to try to do some research on NAET therapy and Celiac disease and I found the most ridiculous blog I've ever seen in my life...I got some chuckles out of it and I'm hoping that you guys will too...

"In 2005 or so I was diagnosed by stool test as positive for Celiac. The symptoms I had at the time were feelings of early fullness when eating and constipation, as well as anxiety and overall poor health. I went on a gluten free diet which improved my symptoms almost immediately. Was on this strict gluten free diet for 3 years until I came across an alternative energy-based treatment for allergies called NAET. (naet.com.) I’ve talked about NAET in a previous post.  After several treatments for a wide array of allergens I was re-tested by muscle testing and found to be free of the gluten intolerance. Not scientific proof per say, but I started eating gluten again and was free of the symptoms I had in the past.

I’ve been eating gluten for a few years again now and just recently had an endoscopy for some other stomach problems I’ve been having. They took a biopsy (tissue sample) and tested for Celiac and H.pylori. They both came back NEGATIVE.  So to recap, in 2005 a stool test showed positive for Celiac and in 2009, just this past month, I had a biopsy that was negative for Celiac. Proving that Celiac is NOT an incurable disease, but a curable one!"

A STOOL SAMPLE??  YOU WERE DIAGNOSED WITH CELIAC FROM A STOOL SAMPLE?????  I feel bad laughing but this is just ridiculous...needless to say my fingers started flying and I provided her some education regarding the truth about Celiac diagnosing.  I don't know whether she misunderstood or her doctor was an idiot (neither would surprise me) NAET didnt cure your Celiac sweetie, you just never had it to begin with....(head smacks desk) Uggh.

Hello everyone!

Since you are all so incredibly knowledgeable and have helped me out so much thus far, I'd figure I'd throw this one out there...

In May I found out that I was Celiac - I definitely was the atypical kind since I didn't experience GI symptoms before diagnosis.  We found out that my mother has the DQ2 gene and my younger sister had the Celiac panel done and tested negative.  I started the Primal diet (I posted about it in another section) and after seeing my success with it, my sister decided to go along with me to help her lose weight.  She had been on the Primal diet for about two weeks and decided to have a cheat day last Friday and had croutons in her salad.  She became sick with abdominal pains and constipation for three days.

Could she have had a masked gluten intolerance that we didn't know about?  Just like I never suspected Celiac disease for me?  Is it possible for one sibling to be full blown Celiac and the other one gluten intolerant?  I figured that with intolerance, it would have popped out and reared its ugly head before now.  Clearly her body doesn't "appreciate" gluten now and she should just go gluten-free, but she keeps asking me if her reaction could just be attributed to the fact that her body hasn't had gluten in two weeks.  She's willing to go gluten free but just wants some feedback regarding if this could be an actual intolerance or her body just re-adjusting to something just added back into her diet.  Any thoughts?

I've also suggested to her to create a profile on here and start asking some questions since you guys are amazing!!!