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

Help, I'm in trouble - what labs are needed to dx?

Tamara in Texas

Recommended Posts

Tamara in Texas Newbie
Tamara in Texas
Posted

Hello,

New here and appreciate in advance anyone who has some thoughts. I've never been diagnosed as celiac disease but accidentally found that a gluten free diet made me feel a lot better and for first time in my life was "regular". That was 12 years ago and I am not 100% but closer to 90% gluten free since this time. Since Dec 2014 I have run a daily low grade fever - ongoing. Since May 2015 I have had mystery problems of osteoarthritis, spine degeneration , vision and teeth problems, inflammation, low vitamin D and B-12, enlarged heart, cardiac issues, neurological issues that happened all of a sudden. Labs at that time were high on cardiac markers. Recent labs show bone loss, Diabetes 2, high bad cholesterol, hyperglycemia and high TSH. I'm not overweight and exercise regularly and eat well. I have these flares/crashes where I am hugely fatigued or suffering with so much inflammation my clothing does not fit, can't get the trash out, feel awful & am falling apart.  May have the rash thing too, but not diagnosed at this time. PCP is sending me to endrocronologist. Prior to this I was super healthy running 10Ks and riding half century rides on my bike, eating well  and wham-o. Also just started peri-menopause the year before too. Can all these problems be related to undiagnosed celiac? Is there anything other than the biopsy that can accurately diagnose this? Two days of 100% gluten free and no fever (yay)! Can the intestine become so inflamed that you run a fever? What is the best kind of doctor to track ALL these problems? My PCP is kind of baffled. Appreciating your help in advance.

Thanks,

T.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Here are the tests:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
-endoscopic biopsy - make sure at least 6 samples are taken
 
(Source: NVSMOM -- ?)

 

Here is the kicker.....you have to be consuming gluten daily for 8 to 12 weeks for the tests to be accurrate.   Check out the University of Chicago's celiac website to confirm.  They are one of the leading research hospitals and they have a nice website!  

 

Has IBD or Crohn's or SIBO been ruled out?  Members here do not report fever.  It is not listed as one of the 300 symptoms related to celiac disease.  

 

Welcome to the forum and let us know how it goes! 

 
nvsmom Community Regular
nvsmom
Posted

 Can all these problems be related to undiagnosed celiac? Is there anything other than the biopsy that can accurately diagnose this? Two days of 100% gluten free and no fever (yay)! Can the intestine become so inflamed that you run a fever? What is the best kind of doctor to track ALL these problems? My PCP is kind of baffled. Appreciating your help in advance.

Thanks,

T.

Yes!  My celiac disease caused mild fevers, flu-like symptoms, mouth sores, hair loss, inflammatory arthritis, fatigue, hashimoto's, ITP, cortisol issues, other issues like migraines, and then prediabetes (not sure about that one). I was convinced I must have multiple diseases but it was celiac disease.  It tool over 2 years gluten-free before my symptoms mostly resolved.  It could definitely be celiac disease.

The blood tests are good, but get as many done as possible because the tests can miss people.  You will need to resume eating gluten for 2-3 months prior to testing though.

Many people see a gastroenerologist for this but most start with the family doctor.  I still haven't seen a gastro since there was no immediate need.

Good luck!

Tamara in Texas Newbie
Tamara in Texas
Posted
  • Author

Thanks for the responses. Glad to know someone else has had the fever and I am so grateful I have not run one for 3 days in a row. I have always had problems with gluten and think I got into a bad health crisis when I hit perimenopause and my hormones stopped working which started causing a lot of bad inflammation.  I was prescribed pregnenolone for perimenopause, which in celiac's helps for the first month but damages the epithelial cells thereafter causing them to not be able to regenerate. I was on it for 8 months, and it had stopped working, so I stopped it. That amplified what I will call an "autoimmune storm" in all systems and I became very ill and no one could figure it out. I thought I was going to die and made a will and got my affairs in order. Luckily I started eating very healthy, praying  and very slowly started to feel better with moderate exercise.  My spine is wrecked, my thyroid is a mess, and metabolic is still out of whack but I am having a lot more "good" days. I am so grateful to find you all. I was running half marathons and riding 50+ miles on my bike before all this happened.

Are there terms for this kind of celiac induced crash of the autoimmune?  Any ideas to rapidly regenerate epithelial cells and damage to the spine? I am not getting back on gluten - ever - even for testing. Worry too that an endoscopy would also do more harm right now than good & that I could not tolerate this. 

God bless you all - so appreciate the comments and all the great info on this site!

T.

nvsmom Community Regular
nvsmom
Posted

I don't know if there is a term for it beyond, really terrible luck.  :(

Feel better.

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
      132,442
    • Most Online (within 30 mins)
      7,748
    Nony
    Newest Member
    Nony
    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.