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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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