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Newbie Diagnosis


sharese28

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sharese28 Apprentice

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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kareng Grand Master

Read around on the forum.  Read this thread with some basic info for newly diagnosed Celiacs

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

1desperateladysaved Proficient

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

nvsmom Community Regular

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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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    • Samanthaeileen1
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