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Old 11-21-2012, 03:06 PM   #1
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Unhappy new to gluten-free, new to life

Hello all, this is my first time posting on any sort of message board for celiac or gluten intolerence/allergy/sensativity.

I have a difficult story that always turns into a book when I try to ask for help, and Im hoping for some answers.

Should I start? What else do i have to lose, ey?

Well alright, the story goes that my entire life I have had issues that seem to be under the gluten intolerance spectrum. I have had IBS symptoms ranging from severe cramping, to a shift between diarrhea and constipation, to my all time favorite of just plainly feeling "unwell" day after day, meal after meal. As well, I have had severe anxiety my whole life, as well as ADD and symptoms that even got me a Autism diagnoses when I was a teenager.

Ever since I was a toddler my parents have tried to find out answers. I was diagnosed with Chronic Anemia, IBS, Neurocardiogenic Syncope, Autism, ADD and Selective Mutism/Social Anxiety.

The problem with me though, is that my symptoms were so severe at one point in time (like severe diarrhea at the same time with hallucinations and possible seizures) i searched for answers further, to which I was always dissappointed with the outcome of testing. I was tested for Rhumatouid Arthritis (negative), MS (negative), epilepsy (negative), with countless EKGs (all came back fine), EEGs (all normal), MRIs (just fine), CATs (perfect). Finally after 24 years of craziness and intense symptoms gastrointestinal symptoms and anxiety i had a friend of mine suggest gluten intolerance. I did some research, and WOW!! Immediately I looked into the Gluten-free diet and cleaned out my food cabinet and refrigerator.

At this point in time Im tired of tests, and doctors telling me Im crazy because these big time tests all come back normal. So calling my GP and saying "hey, forget my new refferral to my second Rheumitologist i want to talk gluten" is seemingly a bit crazy in my opinion.

Why am I here, you say? Not just to get this off my chest, and try to find support; but i want to talk gluten with you. I DID start the GF diet and just from the last 2 weeks of cutting out ALL my favorite gluten infested foods, that whole "generally feeling plainly unwell" feeling, and my constat fatique has almost dimnished. My bowel movements are still a little strange but i figured that will take time. The thing Im worried about the most though is my constant anxiety. That, however, is still headstrong. Im afraid people wil tell me that that might never go away, or that maybe its too late for that symptoms to dicipate because this, possible celiac disease, was found too late. But I still get excited reading on the internet how people like me feel amazingly better with the diet.

Is there hope? is 2 weeks just way too soon to tell? And this too...what If even I cut out all weat and eat nothing except GF foods, what if I AM eating gluten?? That terrifies me.

I wonder writing all this, if I am approaching my situation the wrong way? SHOULD I see a doctor first? Should I get a refferral to a nutritionist or an Allergy specialist first? Idk!

Signed,
Very Confused (formally known as Dotts)
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Old 11-23-2012, 01:13 PM   #2
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Re: new to gluten-free, new to life

If you want to be tested for Celiac, you must be eating gluten -- so this is something to consider. If you stay gluten free, the tests will come back negative. It's also harder to go back on gluten once you have been off. People find the symptoms are worse at that point.

So you need to decide if you want the testing, or if you can live without a diagnosis.

 
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Old 11-28-2012, 01:38 PM   #3
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Re: new to gluten-free, new to life

I decided to get tested, so I started off with pasta and sausage last night. I also started with the worlds worst stomach cramps I have ever had in my entire life.

My question to you is, how long do i need to eat gluten for the tests to be accurate?

I have an appt in 13 days but is that a long enough time period?? Remember I have not been off gluten for very long, maybe a couple of weeks. Does that help the fact that I only have 13 days?
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Old 11-28-2012, 02:17 PM   #4
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Re: new to gluten-free, new to life

My doctor told me I needed to be on gluten every day for 3 weeks. I've heard other people say longer.

I would delay your tests another week to be safe. Antibodies drop when you are not consuming gluten, so your test results may not be accurate.

 
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