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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.




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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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    • Hey all- just thought I would send an update. I worked out hard but not too long or too hard last week on Thursday- one hour pilates class (which isn't too strenuous to me) and then did squats and some other arm/back lifts. But i couldn't do my third set of squats because my quads were cramping up.I took my Glutamine twice that day, vegan protein and tried to eat more, I tried to avoid more than 1 drink for two days, and waited until I wasn't too sore anymore. and just did pilates reformer on friday.  So I did it! I paced myself well. I missed my normal Monday pilates reformer time (sinus infection now from my last cold ) But did make it on tuesday. Today I only had 1 hour of work out time (the child watch was closing!) so I busted out bench, straight leg dead lifts, upright row, reverse lunges with military press, and then finally squats. Let's just say i went pretty hard compared to last week and got 3 sets in for everything  it was great!. so now I am eating like a mad person, I didn't get any quad cramping this time so that was good. Maybe because I have been off dairy that i am absorbing stuff better who knows.  But I know i have to stay on track with my supplements and eating and not drinking.. much  
    • Cyclinglady -  Negative was also what I was thinking. The reference range at my lab does not give a negative, weak positive, and positive range, rather just a normal range. I just found that while scouring the internet. Seem like a lot of other people on here are give weak positive ranges as well. Anyways, I'm sure I'm reading way into this and it's nothing.  Very interesting that you never presented with a positive tTG IgA with such damage to your intestines.  No mention from my doctor concerning the low ferritin either. I only saw it when I was reading my own lab tests. Do you have any suggestions for what could be causing this? For the full celiac panel, is that something I should probably see a GI for? Thanks again for all your helpful suggestions!  
    • Kept the quote short for ease of reading but yeah I've cut a few people loose in the past few weeks after seeing their reactions. Fortunately balanced out by the positive, helpful comments on here though. Main reason for putting myself through this gluten challenge business isn't so much to get the diagnosis but more to find out just how bad the damage is (expecting the villi to be flat as pancakes so anything less will be a bonus). Over here in UK I can apparently get certain gluten-free foods on prescription with the official diagnosis too so that's the other reason I've been given for doing it. I'm hoping that having done the first week back and took the initial hit that the glutening symptoms may not be as bad for the next 3 weeks. Not quite sure how I've got through it at times but at least I know what the problems are caused by now whereas 6 months ago it was a complete mystery. Managed to summon up all my energy reserves for some sport last night, suffering for it today but forgetting about everything for a while makes it worth the pain!
    • I'd say that TTg IGA is negative and would not consider it a weak positive, but....I am not a doctor!  😏  I do know that each lab has different ranges and you should just compare your results with the ranges the lab uses (not from the Internet).  Your ferritin is low and your doctor should find the reason why it is low.  Again, celiac disease can not be ruled out until you have  the complete panel run.  Why?  I have never had a positive TTG test even in follow-up testing (biopsies: Marsh Stage IIIB).  I test positive ONLY to the DGP IGA.   Get the rest of the celiac panel.  
    • Has anyone had a problem with Raw Revolution Glo bars? Specifically the Mixed Nuts Caramel and Sea Salt flavor? The box says gluten free, the website says gluten free ingredients and facility, the label on the bar says: May be manufactured on machinery that also processes wheat. I didn't see it until after I got sick and double checked the label. I was going off the website. Thanks! 
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