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Getting ready for the GI visit, results


Kelloramma

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Kelloramma Rookie

So, here goes...my visit with the GI specialist  is on Monday.  I had tested positive for the IGG antibody and all other bloodwork was negative.  I had numerous trips to emerg with stomach pain, lower back pain, tingly tummy, and diarrhea with alternating "c" (I had the word constipation).    One diagnosis of diverticulitis, another of IBS, and symptoms continued to get worse....Low B12 for 7 years and abnormal liver (something like hepatocellular disease with cirrhosis).  I only have a glass of wine on the weekends...I had been diagnosed in my early 30s with IBS and imodium helped.  I also had a rash on my elbows and back and that is when my new GP said maybe it is celiac and she sent me for bloodwork and 3 months later finally get to see the GI specialist.  I went gluten free and at first it was hard.  It is much easier now...I think at time I give myself contamination because I get some bouts of pain on occasion and I take buscopan and immodium and then I am fine....I am 100% convinced I have celiac but I guess I really do not understand how the rest of the panel would be negative... The rash, the GI symptoms, the B12, and the liver issue all paint a compelling picture...I never thought I would say this but I hope it is truly diagnosed because then I can move forward with a plan.  I am down 22 pounds and back at the gym very hard and feeling almost normal for the first time in many years....I also find is so strange that my "gluten" attack usuallys starts with a pins and needs tingly sensation in my back and tummy...I have written a full history and have copies of all my test results so the GI specialist takes me seriously...I read his reviews and they are not good....I understand I will have to do gluten before the endoscopy but that fine...just looking forward to this being partly over...Have a great day!

 


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cyclinglady Grand Master

You only need one positive on the celiac panel.  I tested positive only to the DGP IgA and had a Marsh Stage IIIB intestinal damage.  

Good luck!  

GalaxyDuster Apprentice

I know what you mean. On one hand, I don't want celiac disease, but on the other hand, it would be a "fixable" problem that would explain so many of my health problems... all the way back to age 11, honestly!

From my understanding, from the very nice and knowledgeable people here, only one test being flagged high counts as a positive or potential positive. Letting the GI specialist know this means that they will (should) take extra care when doing and endoscopy and taking samples for biopsy.

Good luck! I hope you get your answers!

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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