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

[Tamara in Texas 1]

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.

[cyclinglady 1,592]

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! 

 

Edited October 20, 2015 by cyclinglady

[nvsmom 334]

 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 1]

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 334]

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

Feel better.