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stickymommy

Feeling Extremely Frustrated

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yes extremely frustrated... I have been not well since february 15th and no one has been able to give me any idea of what it is. This has been going on since 1999 after having back to back miscarriages. I was told I had + ana that caused me to lose the babies and was told i had fibromyalgia. This frustrated me because i felt it was a garbage can diagnosis (just an easy way to say we don't know what is going on) The ana levels continued to fluctuate over the last ten years as have my symptoms between 5 pregnancies. In february i went thru a very traumatic incident and woke up the next day feeling worse than I had ever felt before. extreme fatigue, muscle aches and weakness, joint and tendon pain, irritability, mental confusion, diarrhea, constipation, bloating, gas,inability to remember anything, chest pain, trouble breathing, pain when i take a deep breathe, ulcers in mouth, hair falling out, weird blistery rash on arms ,elbow,knees and fingers, periods of feeling faint- four times the fainting spells have been so bad they thought i was having a stroke, i become very disoriented, loss control of my body especially legs and arms, and can not speek. As the weeks progressed i could hardly function an d at times didnt know if my legs would hold me up. I often fell strange in my head, like i am moving sideways when going forward. I have been tested for strokes, lupus, ms and sjorgrens- not enough positive in one area to positively diagnose. I recently went on a cleansing diet and removed all gluten from my diet and I felt wonderful. So i asked my primary about gluten. she sent me to a gastro. he said i sounded like a perfect candidate for celiacs. I finally found someone who had a n idea. I was very hopeful. My blood came back neg. Today I had endo and colonoscopy, doctor said all looked ok. I feel frustrated. I was hoping for something.

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yes extremely frustrated... I have been not well since february 15th and no one has been able to give me any idea of what it is. This has been going on since 1999 after having back to back miscarriages. I was told I had + ana that caused me to lose the babies and was told i had fibromyalgia. This frustrated me because i felt it was a garbage can diagnosis (just an easy way to say we don't know what is going on) The ana levels continued to fluctuate over the last ten years as have my symptoms between 5 pregnancies. In february i went thru a very traumatic incident and woke up the next day feeling worse than I had ever felt before. extreme fatigue, muscle aches and weakness, joint and tendon pain, irritability, mental confusion, diarrhea, constipation, bloating, gas,inability to remember anything, chest pain, trouble breathing, pain when i take a deep breathe, ulcers in mouth, hair falling out, weird blistery rash on arms ,elbow,knees and fingers, periods of feeling faint- four times the fainting spells have been so bad they thought i was having a stroke, i become very disoriented, loss control of my body especially legs and arms, and can not speek. As the weeks progressed i could hardly function an d at times didnt know if my legs would hold me up. I often fell strange in my head, like i am moving sideways when going forward. I have been tested for strokes, lupus, ms and sjorgrens- not enough positive in one area to positively diagnose. I recently went on a cleansing diet and removed all gluten from my diet and I felt wonderful. So i asked my primary about gluten. she sent me to a gastro. he said i sounded like a perfect candidate for celiacs. I finally found someone who had a n idea. I was very hopeful. My blood came back neg. Today I had endo and colonoscopy, doctor said all looked ok. I feel frustrated. I was hoping for something.

I too tested negative...Went gluten free anyway...and felt so much better! You could always give it a try!


Constipation, Gas, Bloating, Abdominal Pain, Ataxia, Brain Fog, Joint Pain Headaches

Bloodwork Negative

Went gluten free 10/02/09

Immediate and Positive intestinal improvement with improvement in headache frequency

Enterolab results 11/23/09 (after one month gluten free)

Fecal Anti-tissue Transglutaminase IgA 10 units

Fecal Anti-gliadin IgA 9 units

Fecal Fat 1267 units

HLA-DQB1 Allele 1: 0201

HLA-DQB1 Allele 2: 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

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I too tested negative...Went gluten free anyway...and felt so much better! You could always give it a try!

I know I should, I don't know why I feel like I need a doc to tell me what to do. I just keep worrying what if it is something really bad. I have four children that shows signs also, including itp. My teenage daughter has the same symptoms as me. Gluten free here we come.

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I know I should, I don't know why I feel like I need a doc to tell me what to do. I just keep worrying what if it is something really bad. I have four children that shows signs also, including itp. My teenage daughter has the same symptoms as me. Gluten free here we come.

Over the last few years I had a sudden onset of what looks to be anxiety or panic attacks, eye sight problems, and balance issues (running into walls, corners), and real bad forgetfulness...however I was quickly given a prescription for Ativan and was told I have anxiety and was sent on my way. I ASKED for an MRI and was denied by two completely different doctors. They thought I was just being paranoid. They tested me for celiac by blood and it was negative but they will not do a biopsy...they said I have negative blood tests, no need to test it elsewhere.

So I am in search, as well, for a doc that is as concerned as I am.

I do know that going gluten and wheat free has made me tons better, but still in the process of learning what else my body can't handle...

Keep on truckin'!


-Self-diagnosed gluten/wheat intolerance 2007. Negative (basic) blood test for celiac disease March 2009.

-Diagnosed positive for Celiac 5/11/2010!!

-Vitamin D low (last year was deficient), Iodine low, Protein S low. Balance/dizziness not related to Celiac.

-Elimination diet 11-4-2009 and ended 02-28-2010. Tolerating dairy again. Highly intolerant to soy, sensitive to green peas and corn kernels.

"Oh CRAP! Are you SERIOUS??

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stickymommy,

Were you gluten-free at the time of your testing? If so how long? That can affect the results of your test, as you have to be consuming gluten to have a shot at having accurate test results. And then of course, there are just people who will test negative. If you felt wonderful on the diet, then it seems as though you have found what's ailing you.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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stickymommy,

Were you gluten-free at the time of your testing? If so how long? That can affect the results of your test, as you have to be consuming gluten to have a shot at having accurate test results. And then of course, there are just people who will test negative. If you felt wonderful on the diet, then it seems as though you have found what's ailing you.

No i was told not to go gluten-free, but the day before test while fasting certainly did not have that yucky hungover feeling like i normally do.

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Did you cut out gluten for any length of time? If so, it can take a while of eating gluten again before you will test positive.

If your dd has never be gluten-free, why not test her? That might answer your question as well.

Just a thought.

Good luck and remember you have the greatest interest in your good health.

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