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Member Since 09 Sep 2012
Offline Last Active Oct 02 2014 08:51 AM

#904246 Could This Have Something To Do With Gluten?

Posted by on 28 January 2014 - 05:27 PM

You may also want to consider your family background and health history in considering if you are at risk for being celiac.  It is genetic, so you may have other people in your family with Gastro health issues.  Also, other autoimmune diseases put you further at risk for developing the disease. Italian and Irish have high rates of celiac in their population and apparently North Africa (http://www.ncbi.nlm....les/PMC3264942/).  If you have indicators either by heritage or family/personal medical history, you may want to consider getting tested to document it for your family.


I'm not sure where you are writing from, but your English is quite good!  Yeah you!!


I hope you continue to improve off the gluten.  It actually took me a few weeks to notice anything different, so the fact that you saw immediate results is a good thing.



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#904243 Cross Contamination Help!

Posted by on 28 January 2014 - 05:03 PM

If you're that sensitive, also consider that "certified gluten free" usually tests to 20 ppm and some people react to that amount.  I've seen some baking mixes (Fresh Market) that tout most of their batches test to 5 or under ppm.  I'm not sure that applies in this situation as it seems that others have experienced this type of food sharing problem.  But it may be something to keep in mind.

Hope you feel better!

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#903092 A Shell Of The Person He Once Was...is This Normal?

Posted by on 18 January 2014 - 07:53 AM

I know that your son has special circumstances, but wanted to let you know that I was extremely fatigued at the very beginning of my gluten free diet.  I once had an internal injury (partially collapsed lung) and the fatigue was similar to that.  I imagine that once the gluten was out, my body put all of its energy into healing my gut.  At about 6 months I began to see sporadic higher energy days and they consistently increased- although very slowly.  I was also very prone to illness the entire first year.  Before that point and after the first year marker, I rarely get colds/infections.


I hope he feels more like himself soon!


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#903045 Bloating - Help? :(

Posted by on 17 January 2014 - 01:25 PM

Let me know how the SCD goes!  I looked into that a while back in the middle of a desperate night, but I just couldn't commit because the two guys are such "salesmen".  I was wary of the commercial aspect of it.  But the foods that bother me the least at this point are the foods they say to start with- so maybe they know what they're doing :)  


There are many different forms of elimination diets and rotational diets out there.  I think it's a matter of picking your poison and finding which one sounds easiest to you.  People have improved on many different "plans" and often swear by them.

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#902055 How Long Before Your Mood Symptoms Of Glutening Take To Kick In?

Posted by on 08 January 2014 - 09:22 PM

I get severe anxiety and am extremely irritable.  My poor husband- I just tell him to leave me be at those moments.  My reaction time was 3 hours the first time and seems to have settled in around 6 hours now.  All my symptoms come at once and last for a few hours.  Unfortunately, there are some lingering GI and skin issues afterwards that take about a week to dissipate.  


As someone said earlier, we're all different.  But sometimes it helps to have a bunch of first hand accounts, especially when you can pick out some similarities with others.  It makes me feel better to know I'm not alone.

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#889699 Am I Going Crazy?

Posted by on 25 September 2013 - 07:33 PM

Just reread another of your posts: slurred speech, clumsy, migraines. I don't mean to alarm you, but Please get to a doctor. Sirens are going off for me...
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#882766 Anyone Suffered Or Suffer From Asthma/shortness Of Breathe?

Posted by on 03 August 2013 - 01:08 PM

Hi All,

I'm crashing the party only because the breathing thing is what gets me most.  Short version:  I was on acid reflux meds for 6 years and my GERD always seemed to escalate to the point where I needed stronger meds.  I also chewed tums like it was my job.  Last summer I was on 2 nexium a day (had to be specially approved by my insurance co.) and things were still escalating.  I'm a professional singer, so not being able to breathe well is a real problem.  I thought that the GERD was aggravating the asthma (I've always had allergy induced asthma).  I also had vocal issues and my vocal stamina sucked.  I went to a great ENT and he sent me to a great GI doc.  Long story short- after swallowing test, 24 hr PH probe down the nose, additional endo with bravo and 48 hr PH probe off all meds: I NEVER HAD GERD.  When she went down for the bravo she biopsied my small intestine (something she says she does routinely) and since then I've been gluten-free.  Since GERD is a major issue for singers, I asked my excellent GI doc what to do if students had symptoms.  She said before going on meds, you should get a definitive dx by doing the bravo test.  I don't know how many of you who wrote in were actually diagnosed with acid reflux or were "kinda diagnosed" as I was. I have had 2 barium tests where they saw a little bit of something after turning me all around because my insurance co. required that for the med I "needed".


It wasn't until the first time I was glutened after starting the diet that I found out what my symptoms are: shortness of breath, severe anxiety, a weird and weak feeling in my thigh muscles (no idea on that one), extreme congestion, dry skin days after or other skin issues, fatigue, fog, and the usually GI issues (C in my case, bloating , and severe pain underneath my ribs and on my sternum that I always thought was the GERD).  I was on meds for the GERD, allergy meds for the congestion and a daily steroid inhaler for the breathing, all of which I didn't need if I just ate gluten-free and probably weren't doing much good anyways.  BTW the congestion is what was causing me to have more phlegm from the post nasal drip, which was wreaking havoc on my singing.  Usually singers will notice small changes in the voice/larynx that non-singers would not.  When I am short of breath no inhaler will help.  I just have to wait it out. I would LOVE for some doc to do a study on those of us that have this issue.  I've had the lung functioning tests and twice pulmonologists have told me there's nothing wrong with me.  I never wheeze as I did when I was younger and had an actual asthma attack.  The rescue inhaler helps my overall lung function just a bit when I'm a-symptomatic.  The once a day inhaler I was taking before DX had no effect (shocked my doc!)


Oddly, Years ago- at the start of the chest pain and "acid" issues, I had a spontaneous partially collapsed lung.  After I healed and the X-Rays said I was fine, I was always out of breath, couldn't walk long distances, took the elevator for 1 floor out of necessity (yikes), and had those pains in my sides.  I even persisted until a thoracic surgeon saw me.  Everything was fine.  I'm not sure if the two are connected, but they may be.  The pains in my sides/chest are the same celiac pains I know today.   Very slowly over the course of six months, I returned to normal.  I still don't know why I had the problem and why it went away.


Honestly, Renegade, I wonder if there's something that you're missing that isn't glutening you on a regular basis?  The sinus issues, breathing issues, and fatigue are all symptoms (at least they can be and might be for you too).  Also, I know you're a young male- are you tall and lanky?  When my lung went down, they were so surprised because I didn't fit the normal physical profile for that (young, male, tall and lanky build).  Just another thing to consider.  I tried to be very descriptive so you could tell if we were on the same page or not as far as symptoms go.


I hope you get some answers.  This is all very frustrating and I'm still struggling at times even at my one year mark.  But there are days that are spectacular and I wonder how I ever felt bad.  Those are the absolute best!

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#875984 Really?!? *^&%$#@

Posted by on 22 June 2013 - 07:22 AM

Thank you both for making me feel better!  The redness and welts disappeared over the night and hopefully they stay gone.  My skin still feels incredibly sensitive, though.  It's amazing that mostly sugar and honey could have done that.  Although I'm very glad the visible signs are gone, what I'm most upset about is the reaction itself to something I have used safely before.  It just feels like the rug has been pulled out from under me and nothing "safe" is really safe- if that makes any sense.  

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#869943 New Problem

Posted by on 21 May 2013 - 10:09 AM

Rescheduled so my husband could be there, it will be next Tuesday.  No, I have not been through this before, only blood tests.  I am trying to brave up.  Cost and pain, not my favorite things.

Don't worry about the endoscopy!  I've had two of them.  Although I am just like you and was freaking out prior to each of them (I don't like to be unconscious while people I don't know do things I don't understand to me!) there was no pain and discomfort aside from the IV needle stick.  They aren't kidding when they say it will be over before you know it.  It really is true.  You've got this- survivor mom!!  No worries!!!

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#865301 I Believe This Guy... Gluten Free May Not Be Enough

Posted by on 25 April 2013 - 03:27 PM

Hi Q!

Awesome news about the "fog" - keep up the great detective work figuring out what food YOUR body needs :)

I used to call my brain fog being "naturally stoned" :o  .  I had no idea why it came and went randomly. (probably related to several donuts in one sitting!)  I didn't know what it was, but I knew I would fit in at a Phish show without a problem in those moments.  It's good to be clear headed!!!  Hope it continues for you!!

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#860371 Doctor Says I Should Take Anti-Anxiety Meds...................

Posted by on 24 March 2013 - 12:59 PM

Just FYI- I was seeing a therapist and was considering anti-anxiety drugs right before my diagnosis was made.  The reason I went to the therapist in the first place was because I honestly thought I was a hypochondriac. Turns out, without gluten, I'm just fine.  I no longer feel the need to talk to someone and I definitely don't need the meds.  Imagine my surprise the first time I was glutened after going gluten free and severe anxiety was one of the most prominent symptoms!  I think it may be even more prevalent for you than being frustrated from no diagnosis.  As several others have said, it may be a reaction to the gluten.


Also, before the diagnosis I saw doctor after doctor after doctor.  Twice, my husband went with me and both times when the doctor left the room he turned to me and said "She thinks you're crazy".  He was somewhat of an outside observer in the situation and he was exactly right.  I could feel that those people thought I was a total loon.  Turns out they didn't know enough or weren't smart enough to put 2 and 2 together.  


I'm with everyone else who answered here: don't go on the drugs.  Go gluten free regardless of the diagnosis and see if that helps you.  It has done wonders for my mental health : )

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