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AandGsmomma

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AandGsmomma Apprentice
AandGsmomma
Posted

Hello,

I have been lurking for a while and just joined today. I had horrible stomache pain off and on for years but it isially went away. Well this year after the birth of y second child my horrible stomache pain came back worse then ever. Went to my primary amd they ran blood work and said I had pancrititis and had to see a gi. If it wasnt my pancreas then it was probably a chronoc pain issue that I would just have to deal with the rest of my life. The gi was just as helpful to run a million tests and an endoscopy to tell me I have a sensitive stomach and to tale 80 mg of Omiperzole a day and anti depressents. I refised the antidepressents and would not accept its a chronic pain and all in my head. I went for accupuncture and she suggested I go off wheat simce I have a family history of Celiac. What a difference! I was pff the acid reducer in days and dont have horrid stomach pain, headaches, heart burn or bumps on my legs without gluten. Now I am having a hard time not being angry at all the invasive testing. I later found out I have a bad vitamin B, D, and Calcium deficiancy and that my high liver enzyimes where not due to fatty liver.

Thanks for all the info so far and I look forward to coping and learning as I heal.

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GFinDC Veteran
GFinDC
Posted

Welcome to the forum! :) Missed diagnosis is very common. Most celiacs in the USA don't know they have it. Stick around and learn with us. We are a very freindly group when we aren't getting over being glutened. :)

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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