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Looking For Some Help?
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Hello everyone,

I am new to this site and now sure if I am posting in the correct area, however here is my story, hope someone can help?

I have never had any health problems except the one surgery to remove my tonsils and adnoids when I was in the 5th grade. Over the course of the past 10 years (I am 39) I have had Vertigo, which came out of nowhere, severe bouts of "food poisening" or so the Dr.'s thought. And ongoing severe cramping, diahrea (sp?), loose stool and with this comes a seizure like reaction which I end up fainting. It only happens when I am going to the bathroom and after writing down everything I ate for a month there was never any one thing we could pinpoint this reaction coming from. One time I passed out and broke the front teeth out of my mouth (2 months before my wedding, nice) another time I was home alone with my 4 year old and passed out off the toilet face first onto the ceramic tile floor and looked like I had been in a bar fight. I also get lightheaded and dizzy if I sit too long getting up and walking around seems to help. I have no other pain, no joint pain, a little arthritus in my knees and the occassionaly achy bones feeling but it goes away and isn't occuring enough to cause me any issues.

I recently changed Dr.'s and my new Dr. found that I have tested positive for an auto - immune disease. Which one is the question. I had a positive ANA blood test which led him to this conclusion. Now I have been referred out to a Rhuematologist. We live in a small town and we only have one Rhuematologist and I can't get in to see him until the end of September. I have had a CAT SCAN, MRI, EEG, EKG, and loads of bloodwork. The positive ANA blood test was the only thing to turn up. My Dr. said I am in for a load of more tests because it is so difficult to diagnose auto immune diseases. A friend suggested I check into Celiac Disease or having an allergy to wheat. My symptoms sounded similar so as I have researched online it does seem to have similarities. I was hoping someone out there might have some of the same symptoms or be able to tell me how to get tested for Celiac Disease and do I have to wait for the Rhuematologist or is this something my family practioner can handle? Would love any input anyone could offer, thanks for listening.

Northern Michigander

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You can get a celiac panel done by your general practitioner. Be sure he does the whole panel, not just the IgA.

Also, you may want to get a Lyme test (because of the knee pain and vertigo). Be sure it's done by IGeneX. I had the test kit sent to my house, then took it to my doctor so that I was sure it was done by this particular lab (www.igenex.com).

I'd also have them test your B12 levels.

Have you had your iron levels checked?

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Crohn's or ulcerative colitis are also a possibility. Have you had a colonoscopy done?

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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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