Still no diagnosis, yet really weird labs

[NeverLikedRollercoasters]

I created a lengthy post last September and received a lot of good information from some of you. For a quick recap, I've had a horrible time with various doctors and have not received a concrete diagnosis in anything as of yet, although everything seemed to point to Celiac Disease, and in my opinion it still does. I also received a diagnosis of Hemochromatosis with moderate liver damage and NAFLD based on an MRI without contrast. My ferritin was in middle normal range at the time, but my total iron and saturation were too high. I received 1 phlebotomy and they took 1/2 pint for starters. I was supposed to be on a schedule of every 3 months for phlebotomies. 

Some things I do know at this point... I have HLA-DQA1 of the DQ-8 gene. I have 2 variants of the H63D gene (which is the less common hemochromatosis gene). I have rashes on my two ring fingers that correlate to encountering gluten and very much so look like DH. I get really bad GI trouble to the point of constant nausea and anorexia for weeks if I encounter gluten. Many many other symptoms experienced as well including sharp stabbing pain that I think is my gallbladder but is in 1 specific spot that i assume is near my duodenum. I could go on and on, but if you want more detail you can visit my first post.

I then went to Mayo and they ran me through a ton of tests mainly for Hemochromatosis but they also did a simple Celiac blood test on me which came back negative. I wasn't aware they were going to run this test and I had been gluten free for a year at that point. They also checked my iron/ferritin there and surprisingly, that 1 phlebotomy dropped my ferritin from 165 down to 35 with a low cutoff of 25. The doctor there also wanted another MRI with contrast to confirm liver damage but my insurance denied it.  Among the other tests was a Hep B titer, which came back negative and I just had the vaccine 3 months prior.  B12 was also tested and surprise again, I was deficient at 169 with low cutoff of 180, where again, 3 months prior I was sitting right in the middle of normal.  Also 3 months prior I was tested for a bunch of other vitamins which came back with deficiency in B1, B2, and Copper. Mayo also suggested that I do not pursue a gluten challenge to get the diagnosis due to how ill I become.

Since Mayo, I've been tested for my iron levels 3 more times at 3 month intervals and things are pretty much the same. Low end ferritin but high saturation and total iron. So, I have not had any more phlebotomies. I've also just recently had my B1, B2, B12, Folate, Homocysteine checked and while I'm still waiting for B1 results, the others have come back. Note that I have been taking a B-Complex daily to bring these levels back up, but my results are still showing B2 deficiency and low range B12 yet very high Folate and Homocysteine levels. My research points to possibly having pernicious anemia now and when I search for low B vitamins, the popular cause is Celiac Disease.

I'm pretty confused by all my blood work over the past 2 years and when I look at the time range on all my tests, almost everything goes up and down over time. I'll post some pics down below, but I'm really here to ask a few questions in hopes that someone can shed some light knowing full well that we're probably not doctors here. I'm just left with more questions than answers after $$$$ doctor visits and conflicting opinions.

I'll make it simple as possible:

1. Since I don't have a celiac disease diagnosis due to reasons, is it possible for NCGS to cause all these results? Like does NCGS cause malabsorption the same as celiac disease does? I imagine not since there's probably little to no damage to the intestines, right?

2. Is it possible to just become pernicious anemic for any other reasons than malabsorption?

3. Why would I not be able to bring up my B vitamins after 6-7 months of daily vitamins and what else can I do at this point? I have chronic fatigue these days and I didn't know why until I received these new results.

4. How is it possible for 1/2 pint phlebotomy to drop my ferritin level nearly 130 points? If that's the normal, how do people donate a full pint of blood and not have their ferritin drop too low?

5. If I really did have Hemochromatosis, I should expect my ferritin to rise pretty quickly, right?

6. To this day since going gluten free, I have not intentionally eaten gluten to test myself, however, I have still become ill on occasion and it's almost always exactly starting 24 hours after eating something new, labeled (non certified) gluten free so I'm left to just suspicion and cannot prove anything at this point. Anything else I can do short of making myself super sick for weeks to prove it? I'm terrified and I lost about 15 lbs last July and have yet to gain back the last 5lbs. 

7. I think my 'liver damage', NAFLD, and odd iron scores are from inflammation from Celiac Disease. Care to debate with me?

Thanks for any responses ahead of time and here's some pics of my lab work:

 

Mayo in November, 2020 B12:

Ferritin:

 

[trents]

NCGS does not blunt the villi. That is how it is distinguished from celiac disease as many of the symptoms and long term health risks are the same. 

You have been on a gluten-free diet now for what, six months? It typically takes about two years for the gut to heal completely but if you have been eating gluten free for 6 months there may be enough healing to render biopsy negative or at least inconclusive. 

18% of people with celiac disease have elevated liver enzymes. I do not know if NCGS causes liver inflammation but it wouldn't surprise me if it did. 

Pernicious anemia would require regular B12 injections so if that turned out to reverse the anemia then I assume that would point to a dx of pernicious anemia. Not sure if there are tests that can be used to directly diagnose pernicious anemia.

[NeverLikedRollercoasters]

4 minutes ago, trents said:

You have been on a gluten-free diet now for what, six months?

Hi Trents, thanks for the reply. I have been gluten-free for about a year and a half now. But in the beginning, it took probably a good 6 months to navigate around and I kept contaminating myself. For the past year, I have had 1 light glutening and 2 really bad ones, so even though I'm gluten free, I guess I'm still learning, or I'm just really really sensitive to it.

I'm not scheduled to follow up with my doctor on the recent blood tests until a week from now. I know there's injections for B12 and I'll probably need to get on that, but what about B2 and B1? Never heard of injections for those.

I am still convinced it's Celiac and not NCGS and I missed the boat on diagnosing it. I have way too many things going on to just be 'sensitive'.

[NeverLikedRollercoasters]

9 minutes ago, trents said:

 

Also, I want to add that in those pictures of hematocrit and hemoglobin, those red spikes are from when I was experiencing a reaction of which I assume was due to gluten.

[Posterboy]

11 hours ago, NeverLikedRollercoasters said:

3. Why would I not be able to bring up my B vitamins after 6-7 months of daily vitamins and what else can I do at this point? I have chronic fatigue these days and I didn't know why until I received these new results.

NeverLikeRollerCoasters,

You are not taking your B-Vitamin Complex often enough.

Once a day is not frequent enough for water soluble B-Vitamins.

I wrote a Posterboy blog post explaining why FREQUENCY is much more important than the amount of the B-Vitamin.

See this FAQ Posterboy Blog Post on Niacinamide.

The same goes for Riboflavin aka Vitamin B2 in a B-Complex......it should turn your pee a yellow color.....indicating you are absorbing your B-2....

Unless you do this frequently IE with Meals.....the dose of the B-Vitamin peaks typically after 2 hours and goes down after 4 hours....

So if you don't take a B-Complex 3x with meals for 2 to 3 months....you will not get the help you are looking for....

Also find a Fat Soluble B-1 like Benfotiamine and a Magneisum Glycinate or Magnesium Citrate again with Meals......and they (Magnesium and Thiamine) will help your Fatigue issues!

I will try and follow up in more detail next week.....I have a conference I will be attending this weekend....

So I am just trying to hit the highlights tonight.

But you can search for either Knitty Kitty or the Posterboy on this forum and many threads about Thiamine will come up.

Here is one of the best articles I have ever read on how Thiamine can help Autonomic conditions.

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction/

I hope this is helpful but it is not medical advice.

Posterboy,

[NeverLikedRollercoasters]

On 5/27/2021 at 7:38 PM, Posterboy said:

.it should turn your pee a yellow color.

I guess the complex I was taking wasn't quite enough. I was taking them twice most days and I would still think it would get me out of the hole if they were even close to working. Had a visit with my GP and I've switched to liquid B2 and sublingual B12 and also got on weekly B12 injections. My urine is now a yellow color after taking the liquid B2 so I guess it's working. But I guess I'm still having some absorption issues anyhow because doc said even though my B12 level was above the low cutoff, I was still most likely deficient since my homocysteine was so dang high and it alters the B12 test levels.

I thought I had a test for B1 as well but looks like it wasn't tested. Just going to assume that is also still low so I'll be picking up some drops and/or dedicated B1 supplements as well and hitting them hard. 

[Posterboy]

On 6/7/2021 at 10:02 AM, NeverLikedRollercoasters said:

I guess the complex I was taking wasn't quite enough. I was taking them twice most days and I would still think it would get me out of the hole if they were even close to working. Had a visit with my GP and I've switched to liquid B2 and sublingual B12 and also got on weekly B12 injections. My urine is now a yellow color after taking the liquid B2 so I guess it's working. But I guess I'm still having some absorption issues anyhow because doc said even though my B12 level was above the low cutoff, I was still most likely deficient since my homocysteine was so dang high and it alters the B12 test levels.

I thought I had a test for B1 as well but looks like it wasn't tested. Just going to assume that is also still low so I'll be picking up some drops and/or dedicated B1 supplements as well and hitting them hard. 

NeverLikedRollerCoasters,

I was you once....

We get low in the wrong vitamins.....meaning.....we associate one symptom with another....and taking it never helps the situation....until we take the Co-factor (Vitamin or Mineral) controlling the reaction...

I had the elevated Homocystiene levels and took massive B-12 amounts and medically subscribed.....

FABB (Folic Acid, B6, B12) supplement for over 2+ years and IT (my elevatedHomocystiene levels never got better)...

IT wasn't till I started taking B-2 (Riboflavin) frequently did my elevated Homocystieine levels got better....

Here is the research about it....B-6 and B-2 are important for elevated Homocystiene levels...

Entitled "Effect of B vitamin supplementation on plasma homocysteine levels in celiac disease"

https://pubmed.ncbi.nlm.nih.gov/19248194/

where they note quoting...

"However, vitamin B6 and folate, not vitamin B12, were significantly and independently associated with homocysteine levels."

I didn't really understand it till I read this article about it...

https://chrismasterjohnphd.com/blog/2019/02/26/mthfr-just-riboflavin-deficiency/

It is odd to think about, at first.....but taking B-12 will not help a Homocysteine problem....but taking B-6 and B-2 (Riboflavin) will...

Also begin taking Magnesium Glycinate or Magnesium Citrate with Meals....if you are not already....

The way Magnesium helps.....is that low levels of Magnesium will affect your B-6 levels...

See this great article that explains how Vitamins and Minerals interact in the body....

https://www.deannaminich.com/vitamin-and-mineral-interactions-the-complex-relationship-of-essential-nutrients/?fbclid=IwAR3g3BXWNk9SzrFg4beFgu5ZFSyta5TxzMHS8baAaZaCk4ODCIsOOa8Y2r8

Quoting about how Magnesium and B6 and B1 (Thiamine) interact...

"Magnesium

    Magnesium enhances the uptake of vitamin B6 and vice versa.

    Co-supplementing with vitamin B6 and magnesium helps PMS symptoms and possibly autism.

 Antagonistic Nutrients:

 Vitamin B1

    Vitamin B6 can inhibit the biosynthesis of thiamine."

Being low in Magnesium effects your B-6 levels which affects your Homocycteine levels and being low in Magnesium also affects your ability to use Thiamine because being low in B-6 affects the B-1 synthesis in the body....which is again in turn is governed by being low in Magnesium first....

And since we don't think we are low in Magnesium.....or ignore these connections.....severe health issues develop...

A ground breaking article about this is how Low Magnesium levels are thought to lead to birth defects....

"Magnesium sulfate increases intracellular magnesium reducing inflammatory cytokine release in neonates"

https://pubmed.ncbi.nlm.nih.gov/23590581/

You would think every news outlet in America take note and report this....a (potential) cure for birth defects has been found....that Magnesium can prevent birth defects.....

They concluded quoting

"Conclusion: MgSO4 increases intracellular magnesium, reducing inflammatory cytokine production and release, potentially elucidating the mechanism by which MgSO4 prevents cerebral palsy, eclampsia, and preterm birth."

But you never hear anyone say anything about Magnesium or Thiamine or other vitamins for that matter.....

This severe health conditions at birth can be prevented or at least lessens and are, in part, triggered by a poor nutritional status of Vitamins and Minerals (in Magnesium's) case...

Always they say....Vitamins are not needed by a healthy individual!

This is especially so in Celiac's......being low in Micronutrients IE supplementing with our missing nutrients can help a Celiac's health....

Here is my Posterboy blog post I wrote about it....

Maybe it will help you to read it...

Here is one I wrote about why supplementing with Thiamine (B-1) might also be helpful.

Good luck on your continued journey(s)....

But I think you are now on the right track....IMO

I can only tell you supplementing helped me and give you some tips on what I did wrong....the first time I tried to supplement myself....

I summarized some of my thoughts in this Posterboy blog post here....on whether to supplement or not if you are a Celiac...

You can't win a "Two Front War"......supplementing changes the battle in your favor!!!

And I think you are beginning to see this!

I am glad to see the battle is changing in your favor by your urine now changing to a slight yellow color!

When IT (your urine GLOWS) I found my health started to GLOW! as well!

Here is another current thread that might help you if you haven't read it yet???

Which makes perfect sense if you are still low in Nutrients IE Vitamin and Minerals triggering some of these remaining issues not being helped by eating gluten free alone....

That is all I have every argued.....treat your remaining symptom's with supplementation....

That is IF we know which supplement to take and how to take it....(which we often get wrong) or we choice the wrong form to take.....which is especially true for Magnesium and Thiamine (B-1)....for Thiamine the Fat Soluble forms are best.....and ALWAYS with meals for best absorption....

In the case of B-Vitamins that is Frequently and with Magnesium especially Magnesium Citrate and Magnesium Glycinate.....BEST with meals!

Again I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,