Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Getting Tested - Need Advice
0

7 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,315
  • Topics

  • Posts

    • i hope you tipped that waitress well????
    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined