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k2626

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k2626 Explorer

How were you diagnosed (blood test, biop), how long did it take to get a dx and what symptoms led you to seek help? Thanks so much


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masterjen Explorer

I ended up in emergency twice with severe stomach pains (actually, lower abdominal, which probably caused confusion among the medical profession) in mid Jan. 2010. Prior to that I had had intermittent pressure in my stomach (not bloating) for almost 3 months, which became severe and more constant in mid-Dec. 2009. I was just getting my act together to see my doctor when I landed in emergency. No answers came from those two visits (they did CT, blood-work and ultrasound), and in between the last ER visit and when I followed up with my family doctor a week later, I did some research on my own, and several signs pointed to possible celiac. Talked to my doctor, who then sent me for the antibody blood test, which came back "high probable for celiac". I was then sent to a GI specialist for confirmatory biopsy, which came back "highly positive". I was diagnosed via the biopsy in the 2nd week of Feb..

mushroom Proficient

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! :unsure::) Maybe things really are getting better!

Jestgar Rising Star

My boss, who's an MD, suggested 'wheat' to me. I researched gluten and wheat, stopped eating it, and never looked back.

jerseyangel Proficient

"Nervous stomach", occasional fainting as a child. Teen years symptom free, in my late 20's after my second child was born, began having panic attacks, anemia, and nausea. Late 2003, had the flu and was never the same--developed chronic diarrhea, persistent anemia despite treatment, tingling/numbness/"burning", depression, anxiety, headaches, severe fatigue, and weight loss.

Family doctor was clueless--did blood and stool testing and said "possibly Chron's Disease". I read an article about Celiac Disease by chance and immediately asked for a referral to a gastroenterologist. He scheduled a biopsy (did not do the Celiac bloodwork). He could see damage with his eye, and sent me home that day with instructions to begin the gluten-free (and lactose free) diet. That was June 2005--I was 49.

masterjen Explorer

For those of us who went years undiagnosed, it is heartwarming to hear a story of from first symptoms to diagnosis in a mere seven months! :unsure::) Maybe things really are getting better!

I've read posts and have seen the bios of several of those on this board, and have noted how many have gone years before being diagnosed, and consequently have suffered from associated conditions. I feel very thankful I was diagnosed quickly. Doesn't matter much now, but I do wonder how long I, too, would have been undiagnosed if I hadn't done my research and hadn't specifically said to my doctor: 'My symptoms might be suggesting celiac. Can we check this out?'

k2626 Explorer

I sure hope these stories help otheres in search of answers too


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    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
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