Was Misdiagnosed.... Now im free...

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bethlany889
Regular Member


Date Joined Sep 2011
Total Posts : 41
   Posted 9/8/2011 12:05 PM (GMT -7)   
Hi, my name is Tracy. For 12 years I was in a litteral HELL! I suffered with Chronic fatigue, brain fog, memory problems, joint pain, panic attacks, leg jerks, shortness of breath, blurred vision, vertigo, dizziness, mild apnea, muscle weakness, ow blood sugar, mood swings, etc.

I searched online constantly and must have visited over 20 DR.s and had testing upon testing to figure out was wrong with me, of course I usually got what alot on here got "Its all in your head." :P

Finally on a whim, because my kids were a bit underweight, I had my two children tested for Celiac Disease, an auto immune disease against Gluten ie..wheat/barley/rye/spelt/kamut/n often oats. One tested positive the other just under the cut off. So I tested and myself just under the cut off. However Celiac is genetic and their father being perfectly healthy his whole life, so myself being sick I was sure I was actually positive.

The test is only 75% accurate and even if a person tests negative, they may be helped or healed by a gf diet.

*** I am NOT implying that all or most with Chronic Fatigue has Celiac, only that Celiacs are often misdiagnosed as having Chronic Fatigue syndrome, or other ailments.

So after going gluten free my symptoms began to melt away. The sever panic attacks I had had for over 17 years *POOF* disappeared, the Chronic fatigue, brain fog, joint pain and all the symptoms slowly began to lift as well. I was released from a nightmarish prison.

One thing though, it is HARD to get out all gluten and people who THINK they are eating gluten free and see no results thus giving up, may have missed their chance for freedom. Gluten is in so many food people do not realize!

Even crosscontamination will keep a Celiac sick, meaning if you are eating something like lays potatoe chips that have no gluten ingrediant you will still get 100-3000 ppm of gluten simply because the product ran across the same belt. IT ONLY TAKES 50ppm to KEEP you sick! So do the research and find out how to go TRULY Gluten Free, not even ONE bite intentionally.

Also most DO go through detox so to speak and you often get sicker the first 1-3 months before you get better.

Celiac is often diagnose easily when you have the typical symptoms...bloating, gas, diahrea, but some of us dont ever present with these symptoms, only neuro or psychological, or other misc. physical symptoms.

I pray at least one person who actually has Celiac Disease passes by this thread and reads it finding freedom from prison as I have. <3

God Bless!!!
Tracy

michelleisnice
New Member


Date Joined Aug 2011
Total Posts : 18
   Posted 9/14/2011 4:33 PM (GMT -7)   
I'm glad you found an answer to your problems. I was tested for celiac sprue by my gastro dr. but it was negative. Do you know if there are any other tests for celiac, cuz all the symptoms u mentioned are identical to mine. I get terrible shortness of breath, my heart races fast, extreme fatigue and when i try to do stuff when i'm tired all hell breaks loose- il get rly bad back pain and just get so tired my eyes go blurry, i get pain in my arms and legs, every muscle feels like it weighs a thousand lbs and eventually my heart will race rly fast and il have to walk around, if im not able to lye down and relax. i can't do anything and feel like ive been at the end of my rope for 2 yrs i can't stand it and often think about suicide cuz its so bad. i cant do anything, have no friends, no job cuz its not possible and am doing bad in school and its going very slow cuz i cant go at a normal pace. plus im really depressed today cuz my doc said my 24 heart moniter was fine and he says i dont have tachyardia, but i logged my heart rate for a week from lying down to standing up and it doubles everytime. he said the moniter wouldnt know about that so im getting a tilt table test, but he doesnt think theres anything wrong with my heart, so im rly upset cuz i thought that explained all my symptoms. and would it take 3 mos of not eating anything with gluten to notice any improvement?

bethlany889
Regular Member


Date Joined Sep 2011
Total Posts : 41
   Posted 9/14/2011 6:18 PM (GMT -7)   
I was negative twice on the blood test. The endoscopy of the bowels is more reliable, but again not full proof. There is the genetic test that is suppose to be reliable, but often costs $2-300 if your insurance wont cover it. Sure fire way to find out if your celiac or gluten intolerant is to go gluten free for a period of time and see if your health improves.

Every body is different, some notice improvement withing weeks and some dont see major improvement for months. My improvement started at 3 months and drastic improvement at around th 9 month mark. Though at first I felt worse, as my body began to detox from the years of gluten.

And like I said above....."Even crosscontamination will keep a Celiac sick, meaning if you are eating something like lays potatoe chips that have no gluten ingrediant you will still get 100-3000 ppm of gluten simply because the product ran across the same belt. IT ONLY TAKES 50ppm to KEEP you sick!" So one must be strict and vigilant about the diet, using designated Gluten free pans, etc. and checking labels very carefully.

Some experts think as many as 1 in 20 Americans may have gluten intolerance, which in itself may lead to a myriad of health issues.... check out this link... http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html

michelleisnice
New Member


Date Joined Aug 2011
Total Posts : 18
   Posted 9/14/2011 8:57 PM (GMT -7)   
mmm, uve given me something to think about, i will have to try hard to keep gluten out of my diet. thankyou very much i appreciate your response.

Good-display-names-taken
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/6/2012 1:41 PM (GMT -7)   
Early in this journey, I had a couple of different tests supporting that I'm gluten intolerant. It was quite an adjustment at first. Gluten is pretty prevalent. Even something like beef jerky can be loaded with it. I've been off of it for quite a while and I have noted some improvements. For one thing, I don't crave more and more food after eating something with it. I can occasionally eat something with it, provided I take enzymes and HCL, but I don't make this a habit, maybe every couple of months. Even then, it is a balancing act. It's not like being lactose intolerant where you just need to make sure you're taking lactase.

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 4/11/2012 6:46 PM (GMT -7)   
my feeling just this minute is I cant go thru it. I feel to tired to even type this note. I will do some research and find a list of good foods and forbidden foods. Goodnite all, see ya manana....Cathy
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