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Going To A Gi Doc And Have Some Questions


blondebombshell

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blondebombshell Collaborator

my regular doc diagnosed me as having a gluten intolerance. i am now going to a GI doc to talk and i imagine have some tests done. my appointment isnt for another week. what should i expect?


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ravenwoodglass Mentor
my regular doc diagnosed me as having a gluten intolerance. i am now going to a GI doc to talk and i imagine have some tests done. my appointment isnt for another week. what should i expect?

The GI will want to do a endoscopic exam to see if your villi are destroyed yet. Be aware that not all GI doctors are as knowledgeable about celiac as we would like. You will need to get on the diet as soon as you are done with any testing YOU decide you need. There are many instances of false negatives on the biopsy so even if the GI says you are fine you still need to get on the diet. Whether you choose to have more testing done is entirely up to you. If you have a positive on a blood test you have been diagnosed and for many of us that is enough. Do not get on the diet if you plan on being scoped but if you decide you don't want the expense and the risks with the chance of a false negative that come with the scope then dietary response is also a very valid form of diagnosis. You don't need your doctors permission to stop poisoning yourself.

LoriC Apprentice

I was diagnosed with DH first, then i went to a GI doctor AFTER being on the diet for 2 1/2 months..my blood tests were negative, but my GI doctor said that just the positive results with the diet alone was good enough for him to say i have some kind of gluten intollerence or sensitivity, since my GI problems had disappeared almost immediatly with the diet and my rash almost went away or was way better than the last year. He didn't feel any further testing was needed unless my GI problems came back. So far so good on the diet, the DH appears every now and then, but i'm trying to watch my diet really good. Goodluck and like the Above poster said..don't start the diet before testing. Lori

blondebombshell Collaborator

ok so my appointment next week i think is just a 'meeting.' i've been pretty good and somewhat (i think) on the diet for about 3 weeks now. how long should i start eating before the testing done?

also if i have a gluten tolerance, would that mean that i have celiac's disease?

also can you explain what celiacs can do long term if left untreated?

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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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