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Getting Tested - Need Advice

SMDBill

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SMDBill Apprentice
SMDBill
Posted

So I'm 7 weeks in to being gluten-free and decided I need to get diagnosed officially. My goal is to find out what vitamins or minerals I am deficient in and what strategies the gastro recommends when I get glutened. I read several places that the antibodies tested for will be present up to 6-12 months after being gluten-free. Since I'm in my second month I hope to have sufficient counts, especially since I was glutened a week ago, to show up on the blood tests.

What tests should I make sure I discuss with the gastro? I have a 6 page log of my symptoms before and my condition after being gluten-free. I listed all supplements down to each element and its mg/mcg count that I am taking. I've tried to describe all I was feeling and how things have improved. What else could be important to note or ask? I would appreciate the advice of those who have already walked this path to know what to ask, discuss, etc. that I may not remember or know on my own. My appt is Monday.

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GFinDC Veteran
GFinDC
Posted

Hi SMDBill,

You will probalby test negative for celiac at this point. Antibodies in the blood stream drop off when a person stops eating gluten. You could get the blood antibody tests done anyway, but don't count on them being positive after just a single glutening. The antibodies that cause the damage are in your intestine mostly, where the action is. So they are hard to detect with blood tests. You should get a check of your vitamin and mineral levels so you know if you are deficient in anything.

The usual process is to get blood antibodies first (celiac panel) and then get an endoscopy. On the endoscopy the GI takes 5 or more biopsy samples for lab review. After the testing is complete it is ok to start the gluten-free diet.

Your doctor may ask you to do a gluten challenge, where you will need to eat a prescribed amount of gluten each day for a number of days. The time for a gluten challenge is varaible and each doctor has their own idea of what duration is needed. Sometimes it is 3 months, sometimes it is 6 weeks, or shorter. There isn't a standard for the time required.

1desperateladysaved Proficient
1desperateladysaved
Posted

I tried a gluten antibody 3 weeks after gluten free and it was negative. I don't want to dishearten you. Actually, I just had a Celiac Panel blood test now. That would be 8 months gluten free. I am expecting it to be negative, but if it wasn't then I would figure I was botching my diet.

I think the nutrient absorption tests is a really good thing. Actually, I just had one drawn today. There are some characteristic nutrients that a celiac will be low in. My test had way to many nutrients to list them. Some I can think of off hand are vitamin B, A, K, and D. I am not sure they are specific to celiac. I will receive results in a couple of weeks

Diana

shadowicewolf Proficient
shadowicewolf
Posted

You could get the genetic test done, but for the others, the panel and the endoscopy, will do you no good at this point as they'll be negative.

GottaSki Mentor
GottaSki
Posted

You could get the genetic test done, but for the others, the panel and the endoscopy, will do you no good at this point as they'll be negative.

I disagree with this. While the best opportunity for accurate blood and biopsy are before gluten is removed there is important information to be obtained from a full celiac panel, endoscopy, biopsy and yes most importantly nutrient testing.

It is important to bring a written list of your symptoms prior to removing gluten, improvements and any outstanding symptoms.

Consider whether you'd be open to a challenge for endo - if you are sure you can't tolerate gluten you can be ready for the doctor's suggestion and be ready to push for an endo without challenge - should that be your desire.

Good luck :)

SMDBill Apprentice
SMDBill
Posted
  • Author

My only issue would be the gluten challenge. After 5 weeks gluten-free I got glutened and it was excruciating. I am not sure I could do it again, especially day after day. The one time on accident with a tiny amount (crumb or two) was horrible so going back to gluten is not something I'd be very open to. I also think I had DH on my feet. I had deep, firm blisters, about 15-20 on each foot (in the arch of my foot). They itched like mad and never went away until about 4 days being gluten-free. All of a sudden all my skin issues disappeared, but those bumps were probably DH and obvious signs that I have celiac. I didn't know that at the time or I'd have never stopped eating products with gluten until my examination. I was naive and went gluten-free prematurely, but going back to gluten is not really an option since it makes me so sick and for so long (4 days to feel more normal and another 3 to not feel sore at all). Not sure what to do at this point, but will discuss with the doc on Monday to find out my options and see what he thinks. He's a clinical professor of gastroenterology at Georgetown Hospital and an original member of the medical group he formed near my home. Many years of experience, teaching and in practice, so I'm hoping he knows a lot about celiac. We'll see soon!

GottaSki Mentor
GottaSki
Posted

Not naive at all - premature gluten removal happens all the time - many doctors advise their patients to "try" removing gluten without testing - and please remember you already have a very strong positive to the most important test.

Good luck at your appointment :)

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