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Hi New Here - Wondering About Diagnosis


Jane2007

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Jane2007 Newbie

Hi all

I am new to this forum and new to a realisation I may be suffering some form of Celiac Symptoms - My history is complicated though, I have always suffered from heartburn and live on antacids, I have diahrea most mornings, and get stomach bloating and cramps - I have been told I had IBS in the past - I am Asthmatic and 4 years ago was diagnosed with Pulmonary Sarcoidosis also an autoimmune disorder. ( which has thankfully cleared up) About 8 years ago I was told I had perncious Anemia and take regular shots of Vit B12 - In the last few years I have noticed the stomach symptoms increasing and my hair is getting thinner and thinner - I am not underweight though quite the opposite after years of steriod medication.

I did have a colonoscope about 8 years ago they were looking for Helicobacter - but they couldn't finish the procedure because I kicked and punched every nurse and Doctor away from me, eventhough I was sedated I think it was because being an Asthmatic I couldn't bear the choking feeling -

I have had tests for overactive Tyroid recently all came back clear - I fear another scope into my tummy, eventhough because of my lung problems I have had two bronchoscopes without any problems. The only other question I have is could you really reach 38 years of age without knowing your were celiac?

It is good to know you are here and I will keep you posted.


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lovegrov Collaborator

I was diagnosed at age 46 and my father was 70.

richard

Guhlia Rising Star

Yes, as Richard said, it's very possible to only realize you have Celiac Disease later in life. There are many with the disease that never realize they have a problem. If you're really worried about going through another endoscope, you could always skip it and just try the gluten free diet. I never had the scope, though I did have positive bloodwork, and I'm certain that I have Celiac Disease. There isn't a doubt in my mind. I'm glad I didn't put myself through the scope. If they wouldn't have found damage, then I probably would have continued to be in denial and I would probably still be eating gluten to this day.

mamabear Explorer

Hi..I was diagnosed age 50. The average age at diagnosis now is 46 years(!)..+/- 10 years!

Unfortunately American physicians are still unlikely to think of this diagnosis, and only diagnose about 1 in 5000....... :o . So it is very possible to live 38 years and not get "officially"diagnosed.

GlutenWrangler Contributor

At 22, I feel like one of the lucky ones. Doctors are horrible at diagnosing celiac disease. Even gastroenterologists are clueless. If you want an official diagnosis, talk with your doctor and schedule a celiac panel and a biopsy. If the panel comes back negative, the doctor probably won't want to do the biopsy. But you can still have celiac disease with negative test results, so don't let negative results discourage you. If you don't care about having a diagnosis, just go ahead and try to diet. If it helps, you will know that gluten was the cause of your problems. Good luck.

-Brian

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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