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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Finally Seeing A Gi -- Any Advice?
0

10 posts in this topic

I've been gluten-free for six months now and my joint and GI symptoms are much better, though the the GI ones still flare up. I was never endo'd, only had three blood tests (anti-gliadin IgA,TTG and total IgA) that were normal; and then a followup one for anti-gliadin IgA that was a high positive.

My doc couldn't do the endo because my duodenal ulcer was too inflamed (and he wondered if maybe the 'ulcer' is actually villi damage). So he had me try going gluten-free, and after a few months of that showed intolerance, it was too late to do more blood tests. I know, I know... it's all bass ackwards!

So I'm pretty sure my official diagnosis says 'gluten intolerant' without a definitive rule-out of celiac.

I can no longer tolerate wheat or gluten at all, so a gluten challenge would be hard.

Soooo.... It's taken me months to finally get a GI appointment, now what should I ask him to do?

I'd like to get nutrition testing (I know people have often posted here which tests to get but darn, I'm having a hard time finding them via search).

Are there any other tests/services I should ask him for?

I'm also worried he's an "IBS guy" and will just try to put me on IBS drugs, but there doesn't seem to be any celiac expert in our small county.

Thanks for listening y'all... :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

You will need to test levels of vitamins A, B's (especially B12 and folate), D, E and K, and iron/ferritin, potassium, magnesium, calcium, zinc. Also get your thyroid checked (TSH, free T3, free T4 and TPO antibodies).

0

Share this post


Link to post
Share on other sites

You will need to test levels of vitamins A, B's (especially B12 and folate), D, E and K, and iron/ferritin, potassium, magnesium, calcium, zinc. Also get your thyroid checked (TSH, free T3, free T4 and TPO antibodies).

Thank you! I wouldn't even have thought of thyroid...

0

Share this post


Link to post
Share on other sites

Thank you! I wouldn't even have thought of thyroid...

Thyroid problems are probably the most common co-rider autoimmune problem for celiacs. :)

And by the way, don't accept any "IBS" prescriptions. Just tell him you prefer to get to the bottom of problems rather than mask them.

0

Share this post


Link to post
Share on other sites

Take the test results from the other doctor, too, so he doesn't try starting some Wild Goose Chase.

0

Share this post


Link to post
Share on other sites




Maybe write down your questions. I always forget by the time I get in the office. My new GI took my paper and wrote to me with answers to all my questions. Wow.

0

Share this post


Link to post
Share on other sites

Thanks for the good ideas!

I did print out my test results and will show him. Also wrote up a one-page health history starting with the lactose intolerance I was born with, LOL. (Couldn't even drink mother's milk).

I will also print a list of questions (including the list of tests you've given me).

Mushroom, I do plan to push back on the IBS thing and am not at all interested in their IBS drugs. It's bad enough I have to take the occasional Immodium when work etc. calls for it.

Mindwarp, that's amazing your GI wrote to you with answers. Wow is right.

0

Share this post


Link to post
Share on other sites

Just a quick followup. The doc was GREAT! He never mentioned IBS at all, yay!!!!!!! He read my one-page medical life story and my questions and really appreciated that I'd done that.

He suspects celiac despite my previous negative blood test. He believes I also have SIBO caused by my gluten intolerance. I'm doing antibiotics for that followed by minimum three months on probiotics. He ordered the HLA gene test, endoscopy, colonoscopy, malabsorption stool tests, and vitamin deficiency and h pylori tests. Whew....

I noticed that under allergies, my chart now says "wheat" which I'm glad of because now I have something official to show even if the other tests come up negative. He sounded like he will at the very least diagnose NCGI after the tests are over.

What was interesting was he said our local biopsy folks are incredibly well trained to spot celiac, and he thought that even though I've been gluten-free for six months they might still find some damage. That surprised me.

He left it up to me as to whether I want to do a 2-week gluten challenge before the endo, but said he doesn't usually recommend it for someone with symptoms as bad as mine. (He seems to be up on the latest research where some specialists are now saying two weeks is often long enough for a gluten challenge.)

Anyway, thanks again for the suggestions, it all went better than I'd hoped!

0

Share this post


Link to post
Share on other sites

Oh, I am so glad you found a "keeper". Not many of us are that lucky! You go, girl !!

0

Share this post


Link to post
Share on other sites

That is great, so glad you got a wow too!!

I ended up with an NCGI diagnosis after genetic testing, which he took seriously, and sent me to adietician..

Hope all the testing and diagnosis go well, sounds like you really found a good one :)

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
      103,366
    • Total Posts
      917,513
  • Topics

  • Posts

    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • I have kidney stones...spent last night at the ER
      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate consumption...my urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming surgery...it really is always something!
    • celiac disease is psychosomatic
      I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined