• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • 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?  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
6 6
GalaxyDuster

Overwhelmed by This Possibility

Rate this topic

Recommended Posts

Even when glutened, I have YET to have a positive TTG (IgA or IgG).  Before you give up on a celiac diagnosis, get the GI to order the rest of the panel.  Make sure it is firmly ruled out.    This happened to my 20 year old niece.  celiac disease was completely ruled out (blood and endo), and colonoscopy clear.  Finally, a pill camera found Crohn's at the end of her small intestine out of reach of both scopes.  Note that she could still develop celiac disease one day.  Not saying you have Crohn's, but be persistent and continue to advocate for your health!  

 

 

Keep eating gluten!  

  • Upvote 1

Share this post


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


Hi Galaxy,

This does not mean that you don't have celiac.  You need a full panel done.  I only test positive on the DGP IgA test.  You still need tTG IgG, DGP IgA, DGP IgG and EMA.  Ask your Dr to order the rest?  Do keep eating gluten until all testing is complete and definitely keep advocating for yourself!  You deserve to feel good!! ((((((Hugs))))))

  • Upvote 1

Share this post


Link to post
Share on other sites
39 minutes ago, icelandgirl said:

Do keep eating gluten until all testing is complete

and once that's happened if results are negative please do properly trial the gluten free diet regardless. So much of what you've posted suggests you're on the right track with this, results notwithstanding.

Good luck!

  • Upvote 1

Share this post


Link to post
Share on other sites

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. :( I know I'm not crazy, but you know. :P

Share this post


Link to post
Share on other sites
1 hour ago, GalaxyDuster said:

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. :( I know I'm not crazy, but you know. :P

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer.  

Please know that you are not weak or crazy.  Keep pushing for testing.  It could still be celiac, it could be Crohns.  Push your Dr's to figure this out. 

Best wishes.

  • Upvote 1

Share this post


Link to post
Share on other sites
12 hours ago, GalaxyDuster said:

Well guys, my blood test came back negative for celiac disease. Total IGA =161 (normal), IGA-TTG was < 1. I'm really quite surprised. My GI appointment was bumped up to 5/10 at least, so I won't wait til June to see them. My quest to find out where my lost 40 lbs went continues. Thank you all for your kidness and expertise while I waited for my answer. I can come back and let you know what they found out, in either case. Thank you very much again. All of you stay well!

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done.  Once the testing is done do give the diet a good strict try. Hang in there.

  • Upvote 2

Share this post


Link to post
Share on other sites
7 hours ago, GalaxyDuster said:

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. :( I know I'm not crazy, but you know. :P

Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac.  I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

  • Upvote 2

Share this post


Link to post
Share on other sites

Hi. I wanted to let you all know, I had my upper endoscopy on Friday (5/26). I'm still waiting for my biopsy results. They took samples of the esophagus, stomach and duodenum. They said I had a very reddened, inflamed antrum (lower part of stomach, before the duodenum starts). I'll let you know how it turned out, either way. :)

Share this post


Link to post
Share on other sites

Hi Galaxy!

So good to hear from you!  The waiting game is hard, but you should have the results soon.  Please do let us know when you get them.  Hugs!

  • Upvote 1

Share this post


Link to post
Share on other sites

Hello, everyone. I wanted to let you know about the results of my biopsy.

I do not have celiac disease. All they found was signs of chronic inflammation in the antrum of my stomach. They believe it is from the 1200-1600 mg of ibuprofen I'm taking every day, combined with acid reflux. I will have a gastric emptying study done just to make sure there is no mechanical problem with my stomach.

I want to thank you all again for your kindness and support while I've gone through this painful and emotional journey, losing 40 lbs and being nauseous and never hungry and scared of what it means. You are truly the kindest people I've ever met on the internet, and everyone who is diagnosed with celiac disease is lucky to come here and find you to help them. Best wishes to all of you.

-Sara

  • Upvote 2

Share this post


Link to post
Share on other sites

Sara, well done for getting through the testing process. It's not easy and I'll bet you're relieved its over.

Having said that I can't reiterate the following point more strongly:

On 4/15/2017 at 7:58 PM, Jmg said:

See the doctor, get the blood test and the scope and stay on gluten till they tell you that they've finished diagnosis. If you test positive for celiac then you have your answer and we will help you in the diet. If you test negative however DO GIVE THE DIET A CHANCE! You may be like me, someone who tests negative but still reacts to gluten and you don't want to miss finding that out.

I share so many symptoms with you and I tested negative, blood and scope. However I'd gone gluten free enjoyed symptom relief then saw them return on the challenge so I already had correlation. My GI advised me to go gluten free for life based on what he observed during my challenge. 

You've not had that correlation and presumably the doctor's having excluded celiac have told you not to worry about eating gluten? This isn't an attack on them neccesarily but consider that this area is not yet fully understood, there may be new tests available soon which would give more clarity, but for now there will be some who are excluded who really need to be gluten free. 

Give the diet a proper chance, there are many, many people who test negative but are affected by it. Yes it's a pain, but if you try it and you get relief you will then at least be able to make an informed decision as to what is best for you. 

Best of luck! :)

Matt

 

  • Upvote 1

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

6 6

  • Forum Statistics

    • Total Topics
      108,896
    • Total Posts
      943,402
  • Member Statistics

    • Total Members
      67,070
    • Most Online
      3,093

    Newest Member
    Susie swanson
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi, I am a 24 year old male , with no family history of Celiac.  I have low testosterone.  they did a Biopsy today and during the scope the Doctor said I have Gastritis in upper stomach.  My lab are as follows:   Immunoglobulin A, Qn, Serum 132 90-386 (mg/dL) F Deamidated Gliadin Abs, IgA 3 0-19 (units) - Negative 0 - 19 - Weak Positive 20 - 30 - Moderate to Strong Positive >30 F Deamidated Gliadin Abs, IgG 2 0-19 (units) - Negative 0 - 19 - Weak Positive 20 - 30 - Moderate to Strong Positive >30 F t-Transglutaminase (tTG) IgG 21  H 0-5 (U/mL) - Negative 0 - 5 - Weak Positive 6 - 9 - Positive >9 F Endomysial Antibody IgA Negative Negative  F t-Transglutaminase (tTG) IgA <2 0-3 (U/mL) - Negative 0 - 3 - Weak Positive 4 - 10 - Positive >10   I am wondering the probability that I have celiac?
    • Get pictures if you can and contact GFWD if true and perhaps we can inform others better about this issue.
    • First this is a old post please check date, second, are you celiac/been tested? You should probably see about a gluten challenge and testing if you have not. Or are you confirmed to have a gluten/wheat allergy? What kind of testing was done to determine this? Or is it a NCGS gluten issue? Sorry for the questions but different people have different issues and it is a bit hard to address them without more information. Perhaps start a new thread and feel free to introduce yourself. We always welcome new members and are glad to help out. You mention allergy but also mention swelling stomach/gut which is is sometime a celiac reaction generally.  
    • My husband & I used to be beekeepers. It would be almost impossible for wheat protein to get into honey. The honey is inside the hive; it's not like it's laying out in the open in a plate or a bowl. Here's a hive.: https://www.mannlakeltd.com/10-frame-traditional-growing-apiary-kit-wood-frames-painted?gclid=CjwKCAiA4vbSBRBNEiwAMorER1htsezzCA5djegusWEGx_DzRHG4xePYQIxxd1paGZy4ibxMR_dSFxoCFUoQAvD_BwE The bees have a narrow opening at the bottom of the hive where they enter & exit & when they enter then they climb upward inside the hive. The bottom section is the brood chamber where the queen lays eggs & eventually become bees. At the top of that section is something called a queen excluder which is generally a metal screen type thing with holes in it. The queen is larger than the workers so the holes are smaller than the queen in order to keep her in the brood chamber. This is so she doesn't go laying eggs all over the hive. The workers fit through the excluder allowing them to go to the supers (boxes) above where the nectar is deposited in honeycomb & turned into honey & when a cell is full, they cap it off. You've seen honeycomb before. So when harvest time comes, the beekeeper takes the full (of honey) supers off the brood chamber & replaces them with empty (of honey) supers so the bees can start filling those up. The full supers get taken to what we call the honey house which is where extraction takes place. Here's a YouTube video of honey extraction. As you can see, this is not anywhere that other food is being made or prepared. Other food does not get done in honey production. It's a class all it's own. There's not going to be any wheat barley or rye there.   
    • I noticed my  gluten sensitivity problem started 2 yeats ago after I had my gallbladder removed.  I had to figure it out on my own what my problem was .my sister -who is a nurse practitioner -suggested to me that maybe I am allergic to gluten? I asked her what is gluten ?that was two years ago I have noticed a definite correlation between all my gastrointestinal problems starting after my gallbladder was removed.  as soon as I accidentally ingest gluten my stomach swells up so tight it feels like it will burst have a terrible pain right at the site of where my gall bladder was removed.  I'm so thankful for the site I've learned so much from all of you it is a hard road to travel to try to find things and you can eat that will not make you sick keep posting. I think it gives all of us encouragement! thank you.
  • Upcoming Events