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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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    • daniellelawson2011
      Thank you for the welcome and reply. The first test was tissue transglutaminase IGA and it was normal. The second test just simply says IGA and it was 638. You definitely answered my question, it sounds like im negative for celiac since the 1st test was normal, and that another condition has caused the abnormal result of the IGA. That's exactly what I was wondering. Im almost positive I have MS and I've read results are higher like that with early onset. Or it could be IBS. Hopefully the visit with the neurologist will give me even more answers and point to a final diagnosis. I really appreciate you taking the time to reply and for helping. Thank you so much!
    • trents
      Welcome to the forum, @daniellelawson2011! First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check for iga deficiency. If you are iga deficient, then the ttg-iga and other iga tests that are specific for celiac disease will be abnormally low and this would potentially produce false negatives. You are not iga deficient but, rather, your total iga is abnormally high. This can suggest underlying health conditions, some of them can be serious in nature.  https://labs.selfdecode.com/blog/high-iga/ "High IgA usually points to chronic infections or inflammation, though many disorders can raise its levels. High IgA does not cause symptoms. People show symptoms from their underlying health problem." One thing I might add and that is you must have been eating normal amounts of gluten for weeks/months prior to the blood draw for antibody testing. Testing while on a gluten free or gluten reduced diet will not yield valid results. Also, here is a primer outlining the various antibody tests that can be ordered to check for celiac disease:  
    • daniellelawson2011
      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through the process of diagnosis to maybe give me some insight on what this means and where to go from here. Also of note, i had a brain mri which showed white lesions which arent typical at 44 years old. I have many MS symptoms. I go to the neurologist on Tuesday, but just curious if anyone knows if there is a correlation between iga and MS. I appreciate any help! Thanks!
    • Joe R
      Thank you for your advice. I appreciate the help. 
    • nanny marley
      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
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