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. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    2. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    3. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    4. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
    5. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Some backup to my statement about gluten and milk. Some background. When my son was born in 1976 he was colicky from the beginning. When he transitioned to formula it got really bad. That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
×
×
  • 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.