Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Overwhelmed by This Possibility

GalaxyDuster

Recommended Posts

cyclinglady Grand Master
cyclinglady
Posted

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!  

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 60
  • Created
  • Last Reply
icelandgirl Proficient
icelandgirl
Posted

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))))))

Jmg Mentor
Jmg
Posted
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!

GalaxyDuster Apprentice
GalaxyDuster
Posted
  • Author

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

icelandgirl Proficient
icelandgirl
Posted
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.

ravenwoodglass Mentor
ravenwoodglass
Posted
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.

ravenwoodglass Mentor
ravenwoodglass
Posted
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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 1 month later...
GalaxyDuster Apprentice
GalaxyDuster
Posted
  • Author

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. :)

icelandgirl Proficient
icelandgirl
Posted

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!

  • 2 weeks later...
GalaxyDuster Apprentice
GalaxyDuster
Posted
  • Author

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

Jmg Mentor
Jmg
Posted

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

 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.