• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Some Help Please...
0

Rate this topic

14 posts in this topic

Recommended Posts

So, after 3 days of ALMOST no gluten I decided I want to get tested to find out for sure if that is really what is wrong with me.

I understand that one needs to be eating "normally" including gluten for the test to work correctly, so I ate what I would "normally" eat last night, almost imediately I had bad gas and a little while later had diarreah, then again this morning had diarrea.

The 3 days prior when I was having very little gluten I was fine, I am wondering if getting the test done is worth putting myself through this.

I am finding this very difficult to deal with.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


You should be able to get the blood test pretty quickly. Unless you have to fight with your doctor to get it ordered.

You can always go gluten-free with no test because you know you feel better.

Good luck & Welcome!

Share this post


Link to post
Share on other sites

thanks...I have the blood tests tomorrow, the Dr. told me that there is not just a specific test to find out if you have Celiac, is this true???

He is sending me for a bunch of bloodwork tomorrow and an upper GI on May 17th, do you think i need to continue eating gluten until may 17th or does that not have anything to do with an upper GI.

Thanks again.

Share this post


Link to post
Share on other sites

Yes I agree with Karen. You have not been gluten lite for very long so I don't think you need a 3-month gluten challenge. With only 3 days "almost gluten-free" you will not have healed enough to get rid of any damage anyway. Get into see your dr. You should be able to get the blood tests done immediately on the same day as your appointment.

Share this post


Link to post
Share on other sites

Joe, I think you should eat gluten until the endoscopy. Make sure they take many biopsies of the small intestine. I'm going to look for some info you can print & take with you. Back in a few minutes!

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


Ok. I'm back. Print this off. Highlight the names of the blood tests. It's from an actual medical center and actual docs so my doctors have read it. Make sure he doesn't just write "celiac panel". Ask him to specify because some Celiac panels are out of date. Keep a copy with you. When you are getting the blood drawn, make sure those are what they are sending the blood in for.

http://www.celiacdisease.net/assets/documents/2011CDCFactSheets_AnitbodyBloodTests.pdf

Another good site:

http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm

Share this post


Link to post
Share on other sites

Joe, I think you should eat gluten until the endoscopy. Make sure they take many biopsies of the small intestine. I'm going to look for some info you can print & take with you. Back in a few minutes!

thank you so much...is the upper GI the same as an endoscopy?

Share this post


Link to post
Share on other sites


Ads by Google:


thank you so much...is the upper GI the same as an endoscopy?

Make sure it isn't just the esophagus & stomach. Ask the doctor. You could probably call & ask the office if that is what you are scheduled for. When you get there, they will ask if you know why you are there, any questions, etc. Make sure you are getting what you think you are.

Share this post


Link to post
Share on other sites

thanks...I have the blood tests tomorrow, the Dr. told me that there is not just a specific test to find out if you have Celiac, is this true???

He is sending me for a bunch of bloodwork tomorrow and an upper GI on May 17th, do you think i need to continue eating gluten until may 17th or does that not have anything to do with an upper GI.

Thanks again.

Yes, do keep eating gluten until May 17th if you can handle it. I'm not sure what your dr meant when he said that about their not being specific tests...there are specific tests (Kareng posted links above), HOWEVER the tests cannot rule out celiac. They are designed so that if they come back positive it's very, very, very accurate. If it comes back negative it could be a false negative. In other words you can have a negative test resutl and still have celiac. so perhaps that is what your dr meant abotu them not being specific. Be sure to eat gluten until all your testing is done because not eating gluten can cause your test results to be false negative.

  • Upvote 1

Share this post


Link to post
Share on other sites

Yes, do keep eating gluten until May 17th if you can handle it. I'm not sure what your dr meant when he said that about their not being specific tests...there are specific tests (Kareng posted links above), HOWEVER the tests cannot rule out celiac. They are designed so that if they come back positive it's very, very, very accurate. If it comes back negative it could be a false negative. In other words you can have a negative test resutl and still have celiac. so perhaps that is what your dr meant abotu them not being specific. Be sure to eat gluten until all your testing is done because not eating gluten can cause your test results to be false negative.

ok, I will print those off and bring them to the Dr.'s with me, I can't thank you enough.

Share this post


Link to post
Share on other sites


Ads by Google:


ok, I will print those off and bring them to the Dr.'s with me, I can't thank you enough.

I cannot emphasize enough that you should highlight the actual tests. Docs will read about 2 sentences and they are used to someone highlighting the important parts or where to sign.

  • Upvote 1

Share this post


Link to post
Share on other sites

As painful as it might be you really need to keep eating gluten until the endo is done. As was stated there are false negatives with testing. Do listen to your body and go gluten free as soon as the testing is finished you don't need to wait on the results. Your body is really giving you the answer and do keep in mind that once you are 'officially diagnosed' you will have celiac as a preexisting condition. Some have had trouble getting insurance with a formal diagnosis. Not saying for sure that you will have to deal with that issue but something you should be aware of. We don't need a doctors permission to be gluten free but having a diagnosis can help get doctors to order tests like vitamin and mineral panels and scans to check for osteoporosis.

  • Upvote 2

Share this post


Link to post
Share on other sites

ok, I assume getting an endoscopy at the same time as an upper GI would be my best bet.

I live in Canada, and therefore don't pay for medical visits, do you think I can tell the doctor what I want done?, all he is sending me for is the upper GI, I will tell him that I want the endoscopy, does he have to listen?

Share this post


Link to post
Share on other sites

ok, I assume getting an endoscopy at the same time as an upper GI would be my best bet.

I live in Canada, and therefore don't pay for medical visits, do you think I can tell the doctor what I want done?, all he is sending me for is the upper GI, I will tell him that I want the endoscopy, does he have to listen?

Explain to the doctor what your issues have been and tell him that you did a short trial of the diet and that it relieved your symptoms. Tell him that you are aware that to be tested for celiac you need to still be on gluten and tell him how awful you felt when you added it back in. Then tell him you want to be tested for celiac. It depends on the doctor whether he will listen or not. Being in Canada, from what I have heard here on the board, it can take awhile to get scheduled for an endo. It is up to you whether you want to wait for the test to be done or if you just want to go ahead and go gluten free without the endo after the bloodwork is done.

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
      108,139
    • Total Posts
      939,873
  • Member Statistics

    • Total Members
      66,123
    • Most Online
      3,093

    Newest Member
    TracyDG
    Joined
  • Popular Now

  • Topics

  • Posts

    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
    • I can tell you that last week, I picked up and delivered 30 boxes of Costco pizza to a hungry marching band.  I lived!  Seriously, just wash your hands after handling.  Ennis is right.  Do not take a big sniff of the boxes in case there is any residual flour.  It took days for my van to air out and I did lay some old beach towels to protect my interior as normally, gluten is not allowed!  
    • I just found a nicer compilation of her work, much easier to understand. She also makes the connection between Sleep apnea, vit. D and the gut. Maybe you will enjoy it too:  https://www.vitamindwiki.com/Handout+on+Vitamin+D+(Hormone+D)+and+sleep+-+Gominak+2012 She mentions autoimmune diseases in general but not Celiacs. But I think it all connects and makes sense.  You are right, no matter how a post is, someone might read it. I did. 
    • i looooove nuts.com.  i've already ordered all my nuts, etc, for holiday baking from them.  if you order (i think it's 65 bucks) enough, you get free shipping.  the nuts are so pretty, not all busted up and stuff.  they send you a little sample with your order (this time it was goji berries) also, i got pepitas and sweet rice flour.  they have added alot of new products.  i highly recommend them
  • Upcoming Events