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Been severely let down and at my wits' end

NeverLikedRollercoasters
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NeverLikedRollercoasters Contributor
NeverLikedRollercoasters
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@Posterboy @cyclinglady @DJFL77I and others following along here..

Just thought I'd swing back in and give an update. I finally got my referral to go through for Mayo after being denied on my previous insurance. So, I went last week and spent an entire day going through testing and imaging. Originally, I was sent there for hemochromatosis with gastric symptoms.  I started the day by giving copious amounts of blood work and seems they tested me for just about everything they could think of. Then, I had ECG, Echocardiograms, Ultrasounds on my abdomen and on my heart.  Everything for the most part came back good. Then I got to speak to a GI/Hepatic doctor for about 30 minutes.  He seemed less enthused about my GI problems and other strange symptoms and wanted to really focus on the hemochromatosis.  He ended up basically determining I do NOT have hemochromatosis but he was reluctant to say it because he was hoping to get me an MRI with contrast, but my new insurance denied it.  

After all my imaging I had, and blood work, it just doesn't look like I have hemochromatosis. Basically, I had one phlebotomy just over a month ago and they tested my iron and ferritin at Mayo. Low and behold, I was well on my way to becoming anemic after just 1 phlebotomy. So, he told me to not continue with the phlebotomies.

Also, they tested me for IgA again but of course I've been gluten free for over a year now (with a few occasions of CC).  So, that came back negative again. I also showed him a picture of my finger rash and he wanted to refer me to a dermatologist at Mayo, but the problem is I don't have the rash at the moment so that is also moot.

BUT, here's the couple things that came about that is making me continue to push for answers and I can't get it out of my head that I have a strange case of Celiac disease.

2 months ago I was tested for Vitamin deficiencies. My B12 was exactly in the middle range of good at that point. I've been eating normally the entire time since then and taking B12 sublinguals.  They checked my B12 there and low and behold, I'm deficient.

That now makes me deficient in B1, B2, B12, and Copper (taking a B complex now). I can't explain these at the moment but along with losing 14lbs 3.5 months ago and only having gained 3lbs back since then, I feel like there's some malabsorption going on. Also, used half and half in my coffee for the first time in a year and it did not go so well so dairy is still a no-no for me.

That's not the only thing either and I have since messaged the doctor about this one and he's now sending my case to a Celiac specialist at Mayo. 3 months ago, I also had Hep A and B vaccines (I didn't mention this to the doctor). They also checked titers on these at Mayo last week. The doctor messaged me later in the week and said that I have antibodies for Hep A, but he strongly suggests I go get the B vaccine.  I recall reading that upwards of 50% of celiacs do not get antibodies for Hep B and they don't know why.

So, when I messaged him back, I explained that I just had the A and B vaccine and I should indeed have the antibodies now since I have them for A. I pressed more about it, and with my unexplained liver damage now, and my vitamin deficiencies, and my weight struggle problems, and my rash, is it possible I'm just seronegative for IgA?

Anyhow, I'm now waiting to hear back about what the Celiac specialist says, but I'm not giving up just yet. I may have another visit to Mayo in my future, or not.. we'll see.

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NeverLikedRollercoasters
NeverLikedRollercoasters

@Posterboy, @knitty kitty, @cyclinglady I just got my B1 results from quest. Haven't spoke to my doctor yet, but I just went in to get the genetic test for Hemochromatosis.   Anyhow, I'm def

ravenwoodglass
ravenwoodglass

If you had been gluten free for 7-8 months your tests would be negative. If you feel you can't do a gluten challenge you will just have to go with your bodies diagnosis. That doesn't mean that you may

NeverLikedRollercoasters
NeverLikedRollercoasters

TL;DR at the bottom.  I'm hoping someone here can confirm my observations and help point me in the right direction. I have a lot to say but I'll do my best to keep it as short as possible. (that

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DJFL77I Experienced
DJFL77I
Posted
28 minutes ago, NeverLikedRollercoasters said:

I recall reading that upwards of 50% of celiacs do not get antibodies for Hep B and they don't know why.

what's that mean...

the body doesn't create the anti bodies after getting the vaccine?

NeverLikedRollercoasters Contributor
NeverLikedRollercoasters
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3 minutes ago, DJFL77I said:

what's that mean...

the body doesn't create the anti bodies after getting the vaccine?

Yes, but I can't explain it. There's plenty of articles about it, but there's no determined reason for it. I don't know enough but for some reason it's only Hep B vaccine, not the A.

 

Just a few articles I've found but there's tons:

https://celiac.org/about-celiac-disease/related-conditions/hepatitis-b/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574880/

https://www.allergicliving.com/2015/06/09/hepatitis-b-vaccine-less-effective-for-celiac-patients/

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