Been severely let down and at my wits' end

[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 didn't happen)

As I reflect on my 42 years of existence, I think back and realize I've had digestion problems my entire life that I just thought were normal. As a kid, I'd always leave for school with an upset stomach after cereal and milk. Typically would have multiple movements within a short time span each day and even all day long. Almost always on the softer side and never remember being constipated.

 Growing up, I realize now that not just cereal, but pancakes always upset my stomach too. My mother has always had persistent diarrhea and also had her gallbladder taken out in her late 30's. My father passed away 17 years ago from non-hodgkins lymphoma and we don't know what caused it officially. (I assume it was roundup). I'm at a point in my life where I have tons of questions to ask him about his digestive health but I obviously can't, so I'm left with assuming my issues are from my mother's side.

Fast forward to my 20s-30s... I now recall carrying a bottle of pepto with me frequent enough to not be normal. More specifically, the last 5 or 6 years have been a downer for me. The bulk of my misery started after I herniated a handful of discs in my upper and lower spine (tough being a musician with no roadies). Approximately 1 year after that, I started having odd symptoms which start in my intestines. Almost like there would be rocks or glue. This would be accompanied by a horrible borderline migraine starting in my neck muscles and moving upwards to the base of my skull. These 'flareups' would seem to come and go maybe once every 2 months and last anywhere from a few days to a week. I started attributing this to beer. I drank beer often enough and my two go-tos were corona and guinness. On some occasions, I would have no more than 2 or 3 and then have the worst hangover for 2 days afterwards....not normal, right? I specifically remember having a conversation with my best friend that I thought I might be becoming allergic to beer, maybe candida?

That continued up until a year ago where things took a turn downhill. I started noticing a sharp pain behind my lower left rib which prompted me to see my doctor after a month of progression. Had an ultrasound, which led to a CT scan and we found a splenic cyst. My then doctor told me that was the cause of the pain which I now know is wrong. Very shortly after that diagnosis I had a couple bad occurrences. I became extremely ill after eating a cooked frozen pizza one day. And then an empinada the next week, and then a PBJ the next week. I became so ill I couldn't eat for a week or so each time. Along with that, I started getting a blistery rash on one of my fingers. Tons of other odd symptoms came with this too. So, off to the worst GI I could have ever picked. I mentioned that I thought gluten was causing these issues since I had been told a couple times by different friends that I should look into it. Well, I was totally ignored by this doctor, although they did order and endoscopy. Well, doctor didn't take biopsies except to check for H. Pylori, which came back negative. All he reported back was just gastritis.

I took it upon myself to cut out gluten since I really didn't know any better, and I was so sick I thought my days were numbered. My health improved some but then I kept getting sick. I now know that I just didn't do a good enough job at cutting gluten.. it's in every damn thing. Since my GI didn't do his job, I asked my primary to do a celiac panel, which they refused. I don't really know why. Two months after I went gluten-free I decided to do my own damn test through Quest. I ordered the IgA test which of course came back negative, but I'm still getting sick/sicker, so off to a second opinion GI.

This GI was good at first. This is now 3 months after going gluten-free and we discussed Cealic and he told me he would check. So he ordered an endoscopy and colonosopy for the next day. His diagnosis was more thorough but not good enough. He found a gastric ulcer, reflux/gerd, hiatal hernia, gastritis/inflamation from the top down, polyp (removed), elongated colon, and 4 internal hemorrhoids. But, not biopsies for celiac...wtf? On my follow up he said he could band my hemorrhoids over the course of the next few months, which we did. Not the most pleasant experience. Never got a straight answer why he didn't biopsy but needless to say I'm not happy. I talk him into ordering a genetic test which comes back positive for DQ8 and also deficiency in Vitamin D (I live in sunny florida and get plenty of sun).

I improve some over the next month or two, and then I go out to eat with my friend at a hole-in-the-wall restaurant and the only thing the waitress 'thinks' is gluten-free is a black bean soup even after checking with the cook. I will say, it was pretty darn good soup. Well, 24 hours later I'm completely miserable. Sick as a dog with numerous symptoms that point to classic celiac disease. I will list them all out if anyone asks. I'm sick now for an entire month after this. Lost 10 lbs. So I ask mr GI man to do something/anything for me and I basically insist he take the proper 6-8 biopsies to test for celiac with a marsh score and he agrees to do it. So, we schedule another endoscopy for 3 weeks out and I need to do a 2 week Gluten challenge.. I'm already feeling sick so why not?  Well, I made it 1 day. Ate a publix sub and some hawaiian sweet rolls. Now I have blood in my stool along with mucus so I call mr GI man and tell him, he bumps my endoscopy up to the next day and adds on another colonosopy. He did take biopsies this time but mr pathologist doesn't include a marsh score. Result is negative for celiac though. I recall before going under mr GI asked the assistant to put down a code to get the celiac testing, but she has no clue what the test is.. isn't this a normal test? I feel so screwed by now. 

The day after my 1 day gluten challenge I have the worst migraine ever and my sickness continues for another week or two. I have a new sharp pain where I think it's my duodenum too along with my ulcer that I was told was healed and is also very painful again.

After this procedure, I really buckle down and get rid of all kitchen utensils and throw everything out I suspect has gluten. No more restaurants since the last 5 out of 7 times I've gotten sick (including 1 time on purpose to test myself). 4 months go by and I'm feeling super great. Eating whole foods at home and doing just dandy. Then, I don't know why, I bought some 'gluten free' breaded frozen chicken. 24 hours later, all my symptoms return and now I've been sick for over a month, with 1 week of being recovered, and then sick again after I cooked with certified gluten-free soy sauce. This prompted me to go find more specialists. Currently, I'm waiting on MRI results, and I just went to a Hematologist and he says my symptoms match celiac, but my blood work doesn't. I have some strange things coming up in my blood like elevated hemoglobin and hematocrit that he says most celiac would be on the low side due to iron deficiency.

Next stop is rhuematologist.

TL;DR:
I've had a very bad year with doctors not properly testing me and now I'm in a position where I can't do a gluten challenge to get tested, but I'm not sure if gluten is the culprit. The coincidences are too high with getting sick from restaurants, purposely eating gluten to test myself, blood work is wonky, bank account is drained, symptoms persist for long periods and have recurring peptic ulcers. I've been severely disappointed by the US health care system from insurance to doctors, but I finally have a primary doctor who cares and is trying his best to help, but too little too late I feel. What can I do at this point? Being sick 8 months out of 12 has taken a toll on myself and my marriage (she's great, without her I'd be dead by now). Please help. If you have any questions, I will gladly answer anything. I've left a lot out to cut down on this post.

[knitty kitty]

NeverLikedRollercoasters, 

Ask your doctor for a erythrocyte transketolase test for thiamine deficiency.  Not doctors here, can't diagnose, but you seem to have symptoms of gastrointestinal beriberi described in this article...

https://link.springer.com/article/10.1007/s11606-015-3326-2

Peptic ulcers can cause malabsorption of necessary vitamins like thiamine.  Thiamine deficiency causes gastrointestinal symptoms similar to what you've described.  I've experienced gastrointestinal symptoms of thiamine deficiency, too. 

Thiamine deficiency is frequently overlooked by doctors, unless you're an alcoholic (where it's seen most frequently), but thiamine deficiency can occur in malabsorption diseases like Celiac Disease and peptic ulcer disease.

You said...

"Currently, I'm waiting on MRI results, and I just went to a Hematologist and he says my symptoms match celiac, but my blood work doesn't. I have some strange things coming up in my blood like elevated hemoglobin and hematocrit that he says most celiac would be on the low side due to iron deficiency."

This article explains hematocrit and hemoglobin go down at first with thiamine deficiency, but with prolonged thiamine deficiency (months), they go back up and you get those wonky readings.

 

https://pubmed.ncbi.nlm.nih.gov/7334740/

 

Thiamine deficiency can cause these wonky blood test results.  Mine were like this and my doctor couldn't figure what to make of it and dismissed them.  I got dreadfully ill with thiamine deficiency.  Thiamine deficiency can become life threatening.

Thiamine deficiency can cause white spots on brain MRIs.  

That blistery rash on your finger sounds like Dermatitis Herpetiformis (DH) which is a manifestation in the skin of Celiac Disease.  People who have DH don't have textbook antigen blood test results for Celiac Disease.  

I have DH and I don't test positive for Celiac on blood tests.  I have two Celiac Disease genes (one from each parent.)  

To diagnose DH, you have to get a biopsy of the area NEAR a DH blister, done by someone experienced with DH biopsy.  

Read more about DH in the DH forum topic.

Hope this helps! 

Keep us posted on your progress.

 

2 hours ago, NeverLikedRollercoasters said:

 

 

 

[NeverLikedRollercoasters]

38 minutes ago, knitty kitty said:

NeverLikedRollercoasters, 

Ask your doctor for a erythrocyte transketolase test for thiamine deficiency....

Knitty Kitty, thank you for replying. I will look into that. It's funny you mentioned this. I read through the article and although I didn't quite understand everything, it does seem similar. In fact, it mentions that they were going to diagnose CHS. I've been reading a lot on that as well since I am a daily user. As soon as I mentioned that to my 2nd GI doctor, he was all over it and claimed that's what's causing all of my issues. I fought back hard because I really don't think I totally fit the bill. I haven't vomited in 20 years, but the nausea is unrelenting when I get these flareups. And it lasts for a minimum of 2 weeks these days. I also don't get any relief from hot showers, although I have used a heating pad on my lower abdomen to try and get things moving when I have discomfort. Not much help either really.

Also, my GI asked me to stop MJ to test and although I did get a little better during this time, I usually get better anyway. I stopped for 2 months and during that time was my last endoscopy with my 1 day of gluten challenge that put me down again. That is just 1 instance that I've become ill after knowingly consuming gluten.

Additionally, I was a vegetarian for nearly 20 years before jumping back on the wagon 2 years ago. I asked doctors if that could cause some of these issues but none have thought that's my problem so far. 

I don't think I've been tested for this yet but I've had numerous blood tests over the past year. Maybe my new Hematologist tested last week but I don't really know at this point. He mentioned testing deeper for Iron Deficiency as he thought maybe my tobacco use had masked it on my previous tests, and blood cancer and marrow cancer, but he said he didn't see any red flags for those and was just a precaution. 

It's just throwing me off because I have knowingly ate gluten on purpose and gotten sick, I've been to restaurants and got sick even after checking if things are gluten-free (I know now how easy CC can be). And I have also gotten sick and traced it back to something fishy. It's almost always 12-24 hours after consuming that I start getting symptoms. Next step I will call my Hema and ask if that was something he ordered.

 

38 minutes ago, knitty kitty said:

 

 

 

 

[NeverLikedRollercoasters]

49 minutes ago, knitty kitty said:

Thiamine deficiency can cause white spots on brain MRIs.  

 

 

 

 

This too. My MRI was for my abdomen. It was about a 40 minute procedure and at some points I could feel the MRI pulling on my organs. Afterwards, i mentioned it to her and she said sometimes it can do that if there's specific vitamins or minerals, but more importantly, she mentioned she saw some white specs during the imaging in my intestines and just thought they were microscopic minerals that show up sometimes.

[knitty kitty]

Get the erythrocyte transketolase test! 

I had the unrelenting nausea.  And the Gastroparesis (where things don't move along your intestinal tract like they should).  Thiamine is needed by the lower brain where stuff is controlled like digestion, stomach acid secretion (overproduction of digestive enzymes causing ulcers or overproduction), peristalsis (muscle contractions moving food through the gut), breathing, heart rate, balance,  blood pressure regulation, body functions you don't think about.  Without enough thiamine, all these things don't work properly.  Different people can have different symptoms because thiamine deficiency can manifest as different symptoms (doctors relabel the different groups of symptoms as different diseases like POTS and some types of arthritis.)

Fish can have thiaminase (chemicals that make thiamine useless to the body) in them.

If you eat a lot of carbohydrates in a meal, whether it contains gluten or not, eating all those carbohydrates can use up your thiamine.  Thiamine is necessary to turn carbohydrates into energy.  

Symptoms can wax and wane because maybe one day you eat low carb with good sources of thiamine and the next day you eat high carb and there goes all your thiamine again.  

Thiamine is a water soluble B vitamin in the group of eight B vitamins.  Your body loses thiamine quickly when you have diarrhea. 

Your body can only store thiamine for as little as nine days.  Your body needs more thiamine when you're sick or under stress, or physically active, especially in hot weather. 

Don't know if you're consuming or smoking, but you will be interested in this article...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6741376/

Hope this helps. 

😸

[NeverLikedRollercoasters]

Knitty Kitty, I really think you're on to something. Maybe more-so than any of the 10 doctors I've seen over the past year. All those things you mention are me. From the high blood pressure to the slow moving gut.. all of it. I already called my Hematologist to check if it was already ordered. They're going to call me back today and let me know if it was part of the test. Thank you so so much. I've been completely miserable for most of this past year.

I have stopped the MJ 2 days ago because I just don't feel right and I want to be safe. I've had it stuck in my head that it could be CHS ever since my GI pushed it on me.

[knitty kitty]

Did they give you iodide IV contrast dye with your MRI?  

We're you sick afterwards?

 

 

[knitty kitty]

NeverLikedRollercoasters, 

If I can help someone else after the muck I had to wade through because my doctors didn't recognize an obvious deficiency disease, I will be ecstatic.  

Keep us posted!

[NeverLikedRollercoasters]

No, no dye/contrast, and didn't feel any more sick than I did before. Actually, it was the first day in a month I actually started to feel a little normal.  I will definitely keep you posted.  I thought for a split second to just get some thiamine supplements now, but I'll give it a day and see if they can rush a test for me. Don't want to say I'm convinced just yet but it sounds so promising.

[knitty kitty]

Hold off on the Thiamine supplements because if you start them now, supplements will skew a future test if they have get more blood to do the erythrocyte transketolase test.  

When you have a thiamine deficiency, the thiamine transporters on cell membranes turn off.  Thiamine transporters are sort of like a doorman that only lets thiamine into a building.  With thiamine deficiency, all the doormen go to sleep.  To wake the doormen up, there has to be an angry mob of thiamine that barges in any way it can and shakes the doormen awake.  

High dose Thiamine (300mg or more a day) is needed to flood into the cells and get the thiamine transporters working again.  High dose Thiamine can be given intravenously (fastest method) or by supplementing. 

Sometimes you feel worse before you feel better with thiamine whichever way it's administered.  Allithiamine is a fat soluble form of thiamine that crosses the blood brain barrier and really helps.  And thiamine needs magnesium and other B vitamins to work properly.  It's rare to have just one vitamin deficiency.  So a good B Complex supplement is helpful.

This is an article that explains it.....

https://www.hormonesmatter.com/navigating-thiamine-supplements/

And...

https://www.hormonesmatter.com/thiamine-for-covid19/

Hope this helps!

[NeverLikedRollercoasters]

Good lord, Knitty Kitty.. are you an angel or what?  I'm holding off. I was told by the receptionist I will get a call back today and hopefully get the ball rolling on this. I will say, my new hematologist was very receptive to everything I had to explain to him. I think he was impressed that I had all my documentation in place and even a list and timeline of my symptoms. He seemed stumped but was open to all of it.. either that or he's used to hearing lunatics talk lol.  Seriously though, I'm so sick of doctors offices, especially with this pandemic going on and wondering when I'll be the next victim of that. We'll see what he has to say. After my MRI, the tech was having a hard time copying my CT scan celiac disease from last year to compare my spenic cyst and slightly enlarged liver. She said it would be today before she could get a hard copy to the radiologist. But on Friday, my Hema left the room and came back shortly and said he put in a rush for the report because he couldn't find a computer in his office that had a celiac disease drive  lol.  Anyhow, I really hope to know more so soon and I will be coming right back here to let you know what we've found. Just trying to make it through each day but my anxiety level is through the roof with all of this...has been for over a year, and I know that doesn't help anything at all.

[DJFL77I]

Kitty thinks b1 cures all 😊

Are you taking a multivitamin.

I'm same age as you and live in Fl.. .strange to have d deficit down here.. I'm not even sure what my d level is yet..  because my stupid f'en gastro Dr refuses to order me a vitamin and mineral panel so now I need to wait until Sept 2 to see a nurse practitioner who can do it for me...... because the pos primary Dr is out for a few weeks like all of these worthless chit doctors are..

 

 

 

[NeverLikedRollercoasters]

19 minutes ago, DJFL77I said:

Kitty thinks b1 cures all 😊

Are you taking a multivitamin...

 

 

 

I do take a daily multivitamin, but it's not enough. I really had to beg my GI to test me for deficiencies. I swear, they just don't want to diagnose celiac disease here. And my hunch is because there's no treatment/no cure/no profit. But, I was stern with him and I think he knows what I think of him now  lol.  Anyhow, he did order just the Vitamin D and the Genetic marker test for me. On my follow up for that, I had to remind him he ordered them for me and to review them. I came up 19 (just below the deficient point), and I have DQ8 marker. Don't think he ordered an iron panel. 

It was after that visit that I decided to see and endocrinologist. He got me on 50,000 IU Vitamin D, then Covid hit and no more in-office visits. So, after I finished the first 10 weeks (i lost 2 of them down the drain), he decided to just refill the prescription. So, I had 22 weeks of 50,000. I just had it checked again it's now 63, which is a good number to be at, but for how long? I dunno. 

I totally agree with you on doctor issues. I finally found a great primary doctor and he's been working with me, but can only do so much. So, between him, my endocrinologist, my new hematologist, and now I just got an appt with a rhuematologist in the middle of Sept, I hope to get this awful, debilitating issue figured out. Hope so for you too soon.

[Posterboy]

10 hours ago, NeverLikedRollercoasters said:

On some occasions, I would have no more than 2 or 3 and then have the worst hangover for 2 days afterwards....not normal, right? I specifically remember having a conversation with my best friend that I thought I might be becoming allergic to beer, maybe candida?

NeverlikeRollercoasters,

I read this recently so it is currently on my mind.

See this Hormone Matters article that explains a similar case.

https://www.hormonesmatter.com/case-classic-beriberi-america-thiamine-deficiency/

quoting from the article...

"The mother described how her son

“…went out drinking with friends. The next day he could barely sit up in the car or stand. We were all commenting on why he was having such an extreme hangover”.

Alcohol would certainly exaggerate an existing thiamine deficiency. It is a well-known association."

If even a little Alcohol is triggering an extreme hangover....you might be borderline sufficient in Thiamine....

Read the whole article when you get a chance....

HFCS can also trigger a similar reaction in the body.

See this research entitled "Fructose: It's “Alcohol Without the Buzz"

https://academic.oup.com/advances/article/4/2/226/4591631

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

Posterboy,

[DJFL77I]

12 hours ago, NeverLikedRollercoasters said:

So, I had 22 weeks of 50,000. I just had it checked again it's now 63, which is a good number to be at, but for how long? I dunno. 

i think 63 is actually too high...    20 - 50 i think is normal range..

 

But did he tell you WHY you were deficient?

[frieze]

42 minutes ago, DJFL77I said:

i think 63 is actually too high...    20 - 50 i think is normal range..

 

But did he tell you WHY you were deficient?

Depends on the test, OP, can you must the range on that?

[NeverLikedRollercoasters]

16 hours ago, knitty kitty said:

 

Knitty Kitty.. sorry, no updates. I never got a call back from my hema doc. I expect a call anytime though because he'll have results from my other blood work and MRI.

10 hours ago, Posterboy said:

NeverlikeRollercoasters,

Alcohol would certainly exaggerate an existing thiamine deficiency. It is a well-known association."

If even a little Alcohol is triggering an extreme hangover....you might be borderline sufficient in Thiamine....

Thank you Posterboy. I'll read them when I get a moment. I have to emphasise something though. Those 'hangovers' happened over the course of 5 years starting in 2014. It didn't happen everytime. I'm by far not an alcoholic. When I was drinking non gluten-free beer, I'd never have more than 3 or 4 at a time either. So, if I am deficient, it's been for a long time. And possibly from being vegetarian for so long?  None of my doctors seemed to think that would cause my current/past issues. I am so anxious to find out now though. I scoured through all my history of tests in quest and I've never been tested for it. Also, for that matter, in the past year, I've only drank hard cider and Titos vodka, and I never feel like I did back then. I seriously think it's a gluten thing, but I'm no doc, and my previous docs are not so much either  lol.. jk, but I'm starting to feel that way.

55 minutes ago, DJFL77I said:

i think 63 is actually too high...    20 - 50 i think is normal range.. But did he tell you WHY you were deficient?

So, from Quest Diagnostics site they have the scale posted next to my results. <20 = deficient, 20-30 = insufficient, and 30-100 = normal. So I think I'm good on that for now.  And no, I have absolutely 0 answers to anything other than my own observations. Even the peptic ulcer(s). I say that because only 1 was found when I had the single sharp pain. After my stupid gluten challenge for my last encoscopy, I had a brand new sharp pain where I think my duodenum is the day after eating bread. That is in addition to the other pain that was nearly gone before the challenge, and after my endoscopy, my GI said it was gone and my hiatal hernia has healed itself as well.  So, no, that is why I'm posting here because I get no answers. I also can't find anything about ulcer causes other than H. Pylori (which I've tested negative for 3 times) and NSAIDs, which I don't take. I avoid pharmaceuticals like the Covid. If there was agreement that stress causes them these days, I'd blame it on that but they have retracted that hypothesis.  So, gluten maybe causes abundant acid in me that maybe eroded to an ulcer???

11 minutes ago, frieze said:

Depends on the test, OP, can you must the range on that?

See above!

[NeverLikedRollercoasters]

By the way, the only 'answer' that I'm not accepting for now was from my 2nd GI. One day while he had his hemmorhoid tool deep up my ass while I was complaining that I wasn't feeling well, he asked if I use MJ. I answered honestly (I have a med card). As soon as I answered 'yes', he immediately jumped to that as my cause. He asked me to quit for a month or two and I complied. He hung onto that for the next few visits even though I continuously let him know that I got sick again about 1 month in, directly after my gluten challenge. Ultimately, since I only got to do the challenge for 1 day, the 8 biopsies came back negative (8 months gluten-free before that except for CC on numerous occasions).  On my last visit, he just concluded I was Gluten Sensitive and shrugged his shoulders. And THEN, get this, he suggested I use CBD to cope with the symptoms lol.  What he doesn't know since I haven't been back to him is, I still didn't go back to MJ for 3 more weeks after that visit just to try to prove to myself that it isn't the cause. Helps that I don't have much of an addictive personality I guess.

[DJFL77I]

Michael Jackson?

[NeverLikedRollercoasters]

1 minute ago, DJFL77I said:

Michael Jackson?

lmao.. exactly.  A troubled prodigy. 

[frieze]

On 8/25/2020 at 6:34 AM, NeverLikedRollercoasters said:

Knitty Kitty.. sorry, no updates. I never got a call back from my hema doc. I expect a call anytime though because he'll have results from my other blood work and MRI.

Thank you Posterboy. I'll read them when I get a moment. I have to emphasise something though. Those 'hangovers' happened over the course of 5 years starting in 2014. It didn't happen everytime. I'm by far not an alcoholic. When I was drinking non gluten-free beer, I'd never have more than 3 or 4 at a time either. So, if I am deficient, it's been for a long time. And possibly from being vegetarian for so long?  None of my doctors seemed to think that would cause my current/past issues. I am so anxious to find out now though. I scoured through all my history of tests in quest and I've never been tested for it. Also, for that matter, in the past year, I've only drank hard cider and Titos vodka, and I never feel like I did back then. I seriously think it's a gluten thing, but I'm no doc, and my previous docs are not so much either  lol.. jk, but I'm starting to feel that way.

So, from Quest Diagnostics site they have the scale posted next to my results. <20 = deficient, 20-30 = insufficient, and 30-100 = normal. So I think I'm good on that for now.  And no, I have absolutely 0 answers to anything other than my own observations. Even the peptic ulcer(s). I say that because only 1 was found when I had the single sharp pain. After my stupid gluten challenge for my last encoscopy, I had a brand new sharp pain where I think my duodenum is the day after eating bread. That is in addition to the other pain that was nearly gone before the challenge, and after my endoscopy, my GI said it was gone and my hiatal hernia has healed itself as well.  So, no, that is why I'm posting here because I get no answers. I also can't find anything about ulcer causes other than H. Pylori (which I've tested negative for 3 times) and NSAIDs, which I don't take. I avoid pharmaceuticals like the Covid. If there was agreement that stress causes them these days, I'd blame it on that but they have retracted that hypothesis.  So, gluten maybe causes abundant acid in me that maybe eroded to an ulcer???

See above!

thanks

[NeverLikedRollercoasters]

Hey followers, I have yet to hear back from my hematologist, but I did put in a request to see if they'd order the thiamine testing and setup an appt tomorrow to discuss my results. I got a peek at my MRI and my blood work. Blood work for cancer looks good, but my total iron and saturation are too high while my ferritin is normal, and my MRI shows enlarged fatty liver. I'm underweight, been my whole life, and I'm not a huge alcohol drinker as I stated before. In fact, only had 1 drink in the past 2 months because I got CC'd and was ill for a few weeks, had 1 week of feeling decent, then downhill again with new symptoms which prompted going back to doctors. 

I assume I have primary/secondary hemochromatosis, but what from I dunno.  I guess a genetic test is in order next and possibly some phlebotomies in my future but I don't want to get ahead of myself.

When I would get sick before, I'd always bounce back after 2-3 weeks so this is new. I also had an iron test back in january and things seemed to be okay then.  Is it possible getting glutened may have caused enough inflammation to cause iron overload? Or maybe vitamin d supplements?  Any thoughts?

[DJFL77I]

fatty liver is usually caused by diet... obesity...  diabetes...  My father had it in his 40's but he drank and ate like a pig...

if your iron is too high it may be because your body is storing too much iron...  then you need to give blood like twice a week to lower iron..

did you have all the tests related to liver?

[NeverLikedRollercoasters]

2 minutes ago, DJFL77I said:

fatty liver is usually caused by diet... obesity...  diabetes...  My father had it in his 40's but he drank and ate like a pig...

did you have all the tests related to liver?

I'm not sure what falls under the liver test umbrella. My father passed away quite a while ago but the only person in my family that was obese was his mother. Again, this is new and I'm assuming has popped up since january, but if I had to guess, it was more around march. Furthermore, I had about 4 months of feeling normal from march to july, then I believe I was CC'd, got sick for 2.5 weeks, felt better for 1 week then went downhill.  I'm only saying fatty liver because the MRI notes say "hepatomegaly with fatty infiltration of the liver".

If I knew what test is specifically for the liver, I can answer that question. Do you know?

[DJFL77I]

hepatitis.. for example..       I doubt you have Celiac..

surely they must have seen the liver issue it when you had a CT Scan ?   basically the same as a MRI..  Did you have an IV contrast ?   When i had my CT scan done I had oral and IV contrast... 

you said you drank often in your 20 - 30's ?      

"" I started attributing this to beer. I drank beer often enough and my two go-tos were corona and guinness ""