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Newbie Diagnosis
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I was just diagnosed two weeks ago and it's still an adjustment for me never two eat the foods that I love but i'm so glad to have a diagnosis.I would love to hear your stories on how you were diagnosed with celiac disease.I have gone through so many tests and procedures without knowing what was wrong with me and i now have an answer so grateful.

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My story is in the blog section.  "Back from Nowhere."  Is it okay that I say that?

 

I had 30+ years of fog and fatigue.

I became infertile, but have several children

I nearly died 6 years back. My most dangerous symptom was my blood pressure falling when moving to a standing position and high blood pressure.

 Supplements saved me bringing my blood pressure to athletic rate and the blood pressure curve to normal.  These supplements were tested for and recommended by a chiropractor.

I discovered I had Celiac 10 months ago.

 

Sometimes now, my fog clears and I have energy.  I had alot of healing to do, though, and the road is bumpy and long.  I am still dealing with food intolerances, my body working hard on healing, and being super-sensitive.  However, I am alive and have much hope for better things in my future.

 

I hope you have hope and will soon have some recovery also.

 

Diana

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I was doing research on my son's Aspergers (the Gluten-free Casein-free diet) and found references to celiac disease and gluten sensitivity. I realized that i had felt better in the past(after a few months) when I followed the "Eat Clean Diet", which is pretty low carb. I also read Wheat Belly and continued to reduce my family's wheat consumption. After another year, it was becoming more obvious that cutting down on wheat wasn't enough but I tend to avoid doctors so I wasn't getting tested (they always just say that stomach or joint pain, or cold temps were normal for me so I stopped going to them except when kids needed antibiotics). I'd had celiac symptoms since childhood and doctors had done nothing for me.  A good friend knew I avoided doctors and told me about a store with Biocard (ttg IgA) home tests for sale. I bought one, upped my gluten intake for a month and had a very weak positive test. I took it to my doctor and asked for tests, and it was confirmed with a couple of strongly positive blood tests. I chose to skip the biopsy. I also found my hashimoto's when I got my lab result because I requested another TSH test because I knew the two are often found together; I'm pretty sure I was hypothyroid for almost 15 years.

 

My symptoms were pretty classic: stomach pain, bloating, swelling, migraines, joint pain, hair loss, fatigue, bad skin and nails, hypoglycemic, low pulse and bp (fainting), thinking a bit muddled, bad back. Most of this has improved over the months.

 

My kids have since tested negative but they appeared to have some gluten issues so my household is now gluten-free. Two of my three kids are doing much better gluten-free. They might have had a false negative, or it's too early in the disease to test properly or they are non-celiac gluten intolerant.... it doesn't really matter when it comes to treatmenat. They are gluten-free and feeling better and that's what I care about.

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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