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Could it be? After all these years???

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moonangel12 View Drop Down
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Post Options Post Options   Quote moonangel12 Quote  Post ReplyReply Direct Link To This Post Topic: Could it be? After all these years???
    Posted: 15 Apr 2012 at 12:02am
I know a lot of you are probably tired of hearing about my medical issues, but I'm stoked that I might be honing in on the culprit! I have been having some food sensitivity issues for quite some time now (off and on) and narrowed two of them down to wheat and bananas. I haven't really eating bananas and just broke down and made the decision to cut out wheat last week. Wow! What a difference already! I am losing what I assume to be quite a bit of water weight, along with bloating that's gone down. I have had stomach issues my whole life, as long as I can remember. Lately it's been getting worse and I told DH it's like the muscles "down there" just aren't working right anymore. I brushed it off as issues from repeat tears and scar tissue from childbirth and/or spina bifida occulta. I never considered Celiacs for myself b/c I don't have issues with diarrhea - quite the opposite actually with chronic constipation - at times it feels like I am digesting glass Cry. I do have bouts of extreme cramping followed by a full clean out, but it's rare. I went to the allergist to get the food things checked on since my reactions were getting more frequent and worse which scared me. The skin prick test was negative for all so he's doing some blood tests for sensitivities. I mentioned that my stomach was feeling better being off wheat (no more gas or bloating! yay!!) and he stopped in his tracks and ordered the Celiacs test, no questions asked. I started looking into it more and it covers every.single.thing I have - some I never even considered as symptoms (like canker sores all the stinkin' time). All the things I have been diagnosed with over the years (IBS, colitis, gastritis, GERD, suspected endometriosis, fibromyalgia, etc.) are things that coincide with it and people are often misdiagnosed with before finally discovering CD. I also read a couple places that said it takes on average 11 years to finally figure it out and I started my bouncing around from specialist to specialist in late 2001!! It all really started when I got sick in 8th grade with an unknown bug that attacked my nervous system... one study is possibly showing a link to bodily trauma and the onset of CD. WOW! I finally am getting energy, my belly isn't bloated, my moods have increased to the point I am off my meds, and the list goes on. My friend made me some brownies on Thursday so I splurged and had one... within hours I felt awful. My stomach blew up, felt nasty, and my moods tanked. With MS it explained most but not all of my symptoms, this covers it all! Fatigue, depression, irritability, joint pain, migraines, canker sores, constipation, bloating, brain fog, menstrual issues. I can't believe after all these years I could have treated myself with just a "simple" diet change! I'm excited at the prospect that I can maybe be "normal" again. I haven't felt "normal" in years! Since middle school!! I'm hoping the test is positive so I have more motivation and a "reason" to give people, but I know it's not necessary for me to do what I need to do. I'm just afraid I am going to get slack with it if I don't have a necessary reason to do it - on paper, black and white, no question. DH has read some of the information and said "that's YOU! You could have wrote that!" He's being very supportive and is 100% on board for change - especially after seeing the changes this week - before and after the brownie especially. He's a bit confused on things, but is willing to figure it all out (they gave me an Epi pen in case my reactions turn anaphalactic and he didn't understand why since I wasn't allergic to bees Tongue. To him epi pen = bee stings. He also doesn't think of foods as ingredients. Like he asked why I didn't get more crackers and I said something about the wheat factor. He really didn't put two and two together that they were made out of wheat!)

Lots of scattered thoughts in this one post... just trying to process it all at this point. In my head I already am getting a negative test b/c it always seems to end up that way, but I am also seeing this as a lifestyle change from here on out. I cleaned out the pantry today! Not an easy thing to do, but very very necessary so there wouldn't be any temptation. I'm also curious to see how the kids' bodies react. We have suspected gluten issues for DS but at the time his old doc wasn't on board with it at all which made it hard. I'm going to be talking to their ped about it on Monday at YDD's well visit to get her thoughts. She's been urging me to make some diet changes and/or keep a food journal for each of them, but I have drug my feet up until this point.

Renee
Wife to KJC ~ 6/25/05
SAHM to JJC (ODS) ~ 8/06/07, MEC (ODD) ~ 5/06/09, LGC (YDD) ~ 4/14/11, DAC (YDS) ~ 12/31/12!!
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Post Options Post Options   Quote mamma22boys Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 12:10am
I am so glad to hear you are getting some answers.   That is awsome you are feeling better.  Even if the test for some reason comes back negetive, you know you feel better without the glueten. 
 
I have heard so many people lately that are just figuring out they have CD and can't believe how much better they feel after changing their diet.
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Probably NAK-- so please excuse the typos.
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Post Options Post Options   Quote mrscakes Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 12:22am
That's so great, Renee!  I'm so glad to hear that you're feeling better being gluten-free - amazing that it can effect so many aspects of your health and life.  I had no idea!
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Post Options Post Options   Quote BrittanyM Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 12:42am
That is wonderful! I don't know if he ordered the blood test for you or the biopsy, but just so you know it isn't unusual for the blood tests to come back as a false negative. So glad to hear you are feeling so much better though!
Wife To Timothy (Nov. 2007) and Mommy to Tirzah (12.31.08), Elijah (12.24.10) and Samuel (with Jesus, 1.19.13)   k <a href=http://mariapayd
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Post Options Post Options   Quote mairf Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 1:14am
Wow!  That would be awesome if cutting out wheat would really help you!  
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Post Options Post Options   Quote stegmanjessica Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 1:41am
That's fantastic Renee!! I hope the tests confirm your suspicions but if they don't, don't freak out! If you have found something that makes you feel better, stick to it! I also have a high suspicion that me and the kids are all Celiacs, but I'm not willing at this point to take us all in to the doctor and get tested, primarily because the test involves going back to eating gluten products for about a month before the test. There's NO way I'd do that to my poor kids! 
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Post Options Post Options   Quote J2 Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 8:01am
i really hope that you have nailed what's making you so ill!!
Jenn

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Post Options Post Options   Quote Jaimeis Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 11:04am
Sounds like whether Celiac or not you are definitely gluten intolerant.  I am as well and it has been a freeing change of life the past two years!  So glad you have finally found some light to shed on your troubles.  It is amazing how many symptoms coincide with gluten intolerance/Celiac disease.
Jaime, wife to my beloved Andrew (3/06), mommy to Liam Nathanael(8/07) and Elijah Gideon (12/09)



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Post Options Post Options   Quote mom4moju Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 11:06am
Yeah, Renee! A coworker just went through getting tested for celiac. I don't think she had the genetic confirmation, but was glad to accept the diagnosis of highly sensitive, or intolerant, so kind of wording like that.

I really hope you get a diagnosis, so you mom can quit feeding your dd crackers!
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Post Options Post Options   Quote minneapolismama Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 1:23pm
i hope you find some concrete answers! i think real celiacs is pretty uncommon, how great that your doctor ordered the test right away to find out. 
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Post Options Post Options   Quote RachandSoph Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 2:46pm
That's awesome Renee! Glad you are starting to feel better!
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Post Options Post Options   Quote moonangel12 Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 6:58pm
Originally posted by BrittanyM BrittanyM wrote:

That is wonderful! I don't know if he ordered the blood test for you or the biopsy, but just so you know it isn't unusual for the blood tests to come back as a false negative. So glad to hear you are feeling so much better though!

After reading numerous blogs and articles I'm definitely mentally prepared for a negative test. It was my allergist so he just did the blood test. I doubt I would go through the hassle and expense of a biopsy at this point. I was off of wheat for about a week before the test so I'm wondering if that'll be enough to kind of mess with the results. I'm definitely going to ask where I'm at on the scale if it is negative.

Now I'm just trying to decide how "strict" I need to bee with my diet. Like today at Arbys (DH's craving) I looked at the ingredients and the fries have flour either on them or in them so I didn't eat any. I wonder if that would make a difference or not? But then, at what point is a little too much??

Renee
Wife to KJC ~ 6/25/05
SAHM to JJC (ODS) ~ 8/06/07, MEC (ODD) ~ 5/06/09, LGC (YDD) ~ 4/14/11, DAC (YDS) ~ 12/31/12!!
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Post Options Post Options   Quote lstols Quote  Post ReplyReply Direct Link To This Post Posted: 15 Apr 2012 at 10:56pm
Yeah for discovering the source of your health problems!!

ANY amount of wheat can cause a reaction if you have celiac. However, it will also depend on how severe your celiac is as to how bad your reaction will be. Don't fret though, celiac/gluten intolerance is so common now, there are so many GF options out there. I buy a lot of our pasta and other goodies on amazon.com. Dining out can be a challenge, however restaurants are training employees better, just ask about GF options and I'm sure you'll find some GF friendly places quickly.
Laura - Mom to DS 5/05, DD 4/07, DD 9/10, DS 4/13
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Post Options Post Options   Quote erinchelsea Quote  Post ReplyReply Direct Link To This Post Posted: 16 Apr 2012 at 10:33am
I'm so happy you may have found the answer and are feeling better!!
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Post Options Post Options   Quote mommyjessica Quote  Post ReplyReply Direct Link To This Post Posted: 16 Apr 2012 at 1:21pm
i didn't read the entire post (i was having trouble focusing for some reason..) but that is really wonderful if you nailed the right culprit! i hope you get a diet figured out soon and you start to heal!!
Jessica- Wife to Jared, Mommy to Tiffany Eve- born gorgeous 12-31-07, Emily Jane- born lovely 5-10-10, Lucy Renee- born beautiful 10-3-12

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Post Options Post Options   Quote SouthEastMomma Quote  Post ReplyReply Direct Link To This Post Posted: 16 Apr 2012 at 1:33pm
glad you are feeling better! let us know the test results :)
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Post Options Post Options   Quote BTM Quote  Post ReplyReply Direct Link To This Post Posted: 16 Apr 2012 at 1:40pm
That is fantastic. It really is quit amazing that we can "heal" ourselves through diet. So glad you are feeling better. I can't imagine how happy you must be right now!
wife, mom to sweet TAZ, and sweet growing toddler AJZ giada md
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Post Options Post Options   Quote moonangel12 Quote  Post ReplyReply Direct Link To This Post Posted: 16 Apr 2012 at 2:49pm
Originally posted by BTM BTM wrote:

That is fantastic. It really is quit amazing that we can "heal" ourselves through diet. So glad you are feeling better. I can't imagine how happy you must be right now!

Depends on how you look at it LOL. I am thrilled that I am feeling better and have hope for the future... not so excited about some of the food changes Tongue. I know it'll be worth it in the end, but man oh man am I going to miss fresh baked bread and all those goodies. My dad did all kinds of baking growing up so that's what I was raised on. I know I'll get used to it though. Just dropped $50 at our local health food stores for a pretty pitiful bag of stuff Ouch. I'm hoping to start experimenting with different flours and find some places online or in the neighboring city that might have the stuff cheaper. $5.50 for a small loaf of bread?? sheesh!

Renee
Wife to KJC ~ 6/25/05
SAHM to JJC (ODS) ~ 8/06/07, MEC (ODD) ~ 5/06/09, LGC (YDD) ~ 4/14/11, DAC (YDS) ~ 12/31/12!!
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Post Options Post Options   Quote BTM Quote  Post ReplyReply Direct Link To This Post Posted: 16 Apr 2012 at 3:07pm
Originally posted by moonangel12 moonangel12 wrote:


Originally posted by BTM BTM wrote:

That is fantastic. It really is quit amazing that we can "heal" ourselves through diet. So glad you are feeling better. I can't imagine how happy you must be right now!

Depends on how you look at it LOL. I am thrilled that I am feeling better and have hope for the future... not so excited about some of the food changes Tongue. I know it'll be worth it in the end, but man oh man am I going to miss fresh baked bread and all those goodies. My dad did all kinds of baking growing up so that's what I was raised on. I know I'll get used to it though. Just dropped $50 at our local health food stores for a pretty pitiful bag of stuff Ouch. I'm hoping to start experimenting with different flours and find some places online or in the neighboring city that might have the stuff cheaper. $5.50 for a small loaf of bread?? sheesh!
Yes I suppose it does! Maybe I should have said so relieved;)
wife, mom to sweet TAZ, and sweet growing toddler AJZ giada md
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