Been severely let down and at my wits' end

[NeverLikedRollercoasters]

On 8/31/2020 at 7:03 PM, Posterboy said:

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

Posterboy, you are filled with info. Thank you. I still don't have answers, but I think you're right about the B1 test not being correct. However, just got a call from my hematologist. My 2nd Iron test was still abnormal and NOW he wants to do the genetic test for hemochromatosis.  I suspect I should have at least the B1 whole blood test results in a couple days too.  I'll update then. 

Do you know anything about statistics for celiac and hemochromatosis? Seems odd to me that 7 months ago my total iron/saturation seemed normal (didn't have ferritin checked then, don't know why). Since then, I've had 3 glutenings (still claiming this). This last time was just like every other time, but the following month is when my enlarged liver and elevated total iron / saturation was found. Also, feeling a bit bad, but not the typical glutening bad.

[NeverLikedRollercoasters]

On 8/29/2020 at 10:34 AM, cyclinglady said:

Please share your thiamine results

@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 deficient in B1. Don't think this is the Erythrocite Transketolase test though as Posterboy mentioned. Pretty sure it's just the whole blood test.

Edit: It's 7L  From desired range of 8-30

[knitty kitty]

Thanks for letting us know!

Keep us posted on your further results!

[Posterboy]

On 9/2/2020 at 11:14 AM, NeverLikedRollercoasters said:

Posterboy, you are filled with info. Thank you. I still don't have answers, but I think you're right about the B1 test not being correct. However, just got a call from my hematologist. My 2nd Iron test was still abnormal and NOW he wants to do the genetic test for hemochromatosis.  I suspect I should have at least the B1 whole blood test results in a couple days too.  I'll update then. 

Do you know anything about statistics for celiac and hemochromatosis? Seems odd to me that 7 months ago my total iron/saturation seemed normal (didn't have ferritin checked then, don't know why). Since then, I've had 3 glutenings (still claiming this). This last time was just like every other time, but the following month is when my enlarged liver and elevated total iron / saturation was found. Also, feeling a bit bad, but not the typical glutening bad.

Never Like Roller Coasters,

Celiac.com did an article on the topic of Hemochromatosis aka known as iron overload a few years ago. Here it is.

I have had similar issues.....so I feel your pain.....but since I do so much research for myself (and my friends)....sometimes I actually get  lucky and find things that can/could help people.

I found this research just recently by accident that says/indicates you/we might have an issue with Sulphur metabolism.

This one entitled "Modulation of intestinal sulfur assimilation metabolism regulates iron homeostasis"

https://www.pnas.org/content/115/12/3000

And this one entitled "Modulation of sulfur assimilation metabolic toxicity overcomes anemia and hemochromatosis in mice"

https://www.sciencedirect.com/science/article/abs/pii/S2212492620300051

Now that I have found a trigger for it (Hemachromatosis) in Celiac's I am curious if my own elevated iron levels will begin to improve now?

I am not a bronze statue yet.....so that is good!

Some people think of these as a healthy thing....but it might be "unwittingly" be a sign of Hemochromatosis and most people don't know the connection.....

I didn't unto read this article about it...I might have of vaguely been familiar about it...but I had forgotten it....till this article triggered in my mind.

https://www.wellbeing.com.au/body/health/a-case-of-haemochromatosis.html

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

Posterboy,

[NeverLikedRollercoasters]

Hey guys, just finally got a call from my doc. The wait doesn't help the anxiety at all. Anyhow, confirmed deficient in thiamine and start 100mg daily. Also, I've tested positive for two variants of H63D genotypes and with evidence, I have hemochromatosis (still not out of range ferritin though). Doc said he was quite surprised to see it.

Have a liver MRI scheduled next week AND... He brought up Mayo clinic and offered to put in a referral for me. So, I'll be expecting a call from them as well. I still think the hemochromatosis is brand new last month and may or may not be related to gluten exposure. I feel awful these days but nothing like my reaction to gluten as it's quite a different feeling. 

[DJFL77I]

I'm here for you bro.. we're all gonna make it...  message me if ya want.

Maybe we can go fishing in the future ✌

[NeverLikedRollercoasters]

13 minutes ago, DJFL77I said:

I'm here for you bro.. we're all gonna make it...  message me if ya want.

Maybe we can go fishing in the future ✌

Right on breddah!  Soon as I can make it 8 hours without a nap lol.

[Posterboy]

1 hour ago, NeverLikedRollercoasters said:

Hey guys, just finally got a call from my doc. The wait doesn't help the anxiety at all. Anyhow, confirmed deficient in thiamine and start 100mg daily. Also, I've tested positive for two variants of H63D genotypes and with evidence, I have hemochromatosis (still not out of range ferritin though). Doc said he was quite surprised to see it.

Have a liver MRI scheduled next week AND... He brought up Mayo clinic and offered to put in a referral for me. So, I'll be expecting a call from them as well. I still think the hemochromatosis is brand new last month and may or may not be related to gluten exposure. I feel awful these days but nothing like my reaction to gluten as it's quite a different feeling. 

 

1 hour ago, NeverLikedRollercoasters said:

Right on breddah!  Soon as I can make it 8 hours without a nap lol.

Never Like Roller Coasters,

Taking Magnesium Glycinate and Thiamine Vitamin B1 as (Benfotiamine) easiest highly absorb-able form to find will definitely help your fatigue I believe.

But they should be taken twice a day or with meals for best effect.

The more frequent you take them....the quicker it will help you.

This is Kaufmans research on Niacinamide and why frequency is important when taking a B-Vitamin...

http://www.doctoryourself.com/kaufman3.html

I will quote from it so you will/can see how the frequency of the B-Vitamin (and form for Thiamine) is more important than the size of the dose.

quoting

"The (more frequent) 250 mg dose of niacinamide is 40 to 50 % more effective (quicker)  in the treatment of arthritis than the (less frequent) 500 mg. dose. As an illustration, see the reprint of my Tom Spies Memorial Lecture: Niacinamide, a Most Neglected Vitamin. This illustrative case history begins on page 17 column 2 and continues on page 18 column 2.

Do not use hard gelatin capsules containing 250 mg niacinamide because they do not deliver niacinamide as efficiently as 250mg niacinamide in thin gelatin capsules in the treatment of joint dysfunction (arthritis)."

In my paper in J. Amer Geriat. Society, 1955 3:927-936 I noted that niacinamide (alone or combined with other vitamins) in a thousand patient-years of use has caused no adverse side effects."

Taking Thiamine only once a day....while helpful....can be speed up by taking it with meals for approx. 3 months (same with Magnesium Glycinate) and can then be trialed back to once a day.

We  know this is true because this duration has been studied in depressed people.

quoting from "Understanding nutrition, depression and mental illnesses" and their section on B-complex's...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738337/

"B-complex vitamins

Nutrition and depression are intricately and undeniably linked, as suggested by the mounting evidence by researchers in neuropsychiatry. According to a study reported in Neuropsychobiology,[42] supplementation of nine vitamins, 10 times in excess of normal recommended dietary allowance (RDA) for 1 year improved mood in both men and women. The interesting part was that these changes in mood after a year occurred even though the blood status of nine vitamins reached a plateau after 3 months. This mood improvement was particularly associated with improved vitamin B2 and B6 status. In women, baseline vitamin B1 status was linked with poor mood and an improvement in the same after 3 months was associated with improved mood. Thiamine is known to modulate cognitive performance particularly in the geriatric population.[43]"

I have taken a B-complex following this regimen before....and I no longer need it.

I do still take Magnesium Glycinate/Citrate because it helps so much!

As Chlorophyll is to the plant.....so is Magnesium to the animal!

Usually you will notice a spike in energy in the first month after beginning Magnesium/Thiamine together with meals!

But don't trail off on the Thiamine for at least 3 months and probably a B-complex with it....most people will show/notice improvement for the first 6 months....then you have plateaued and then you can see if your fatigue comes back after taken a break from Thiamine.

A B-complex with your Benfotiamine and the Magnesium Glycinate would be the best of both worlds!

Niacinamide has been used in treatment of DH.

https://www.ncbi.nlm.nih.gov/pubmed/30390734

Here is my Posteboy Open Letter that explained what happened to me.  IF it/I can help one other person with It will have been worth it!

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

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

Posterboy by the grace of God,

[NeverLikedRollercoasters]

12 hours ago, Posterboy said:

Taking Magnesium Glycinate and Thiamine Vitamin B1 as (Benfotiamine) easiest highly absorb-able form to find will definitely help your fatigue I believe.

Thank you again Posterboy. Are you a bot, by chance (hehe  just kidding). But you seem pretty knowledgeable.  I will look into that.  I'm assuming part of my fatigue issue is the iron overload as well, but who knows.

12 hours ago, Posterboy said:

Do not use hard gelatin capsules

No problem for me.. call me a sissy if you will but I've never been able to swallow pills. Had a bad experience as a child and unless they're super tiny, I always choke on getting them down. So, I'm stuck with dissolvables, bilinguals, or liquid.

12 hours ago, Posterboy said:

B-complex vitamins

I expressed to the doctor that I think I may have some other deficiencies going on too and asked if he would order a full vitamin/mineral panel for me. He declined and said he just wants to focus on the iron first, and as a hematologist, he doesn't usually deal with that anyway. So, when I go to the rheumatologist I'll ask if she'll do it, and if not, I'll go back to my primary (heading there for food allergy testing anyway). He's been the most supportive doctor I've had this past year and I'm sure he'll do it if I ask.

[frieze]

11 hours ago, NeverLikedRollercoasters said:

Thank you again Posterboy. Are you a bot, by chance (hehe  just kidding). But you seem pretty knowledgeable.  I will look into that.  I'm assuming part of my fatigue issue is the iron overload as well, but who knows.

No problem for me.. call me a sissy if you will but I've never been able to swallow pills. Had a bad experience as a child and unless they're super tiny, I always choke on getting them down. So, I'm stuck with dissolvables, bilinguals, or liquid.

I expressed to the doctor that I think I may have some other deficiencies going on too and asked if he would order a full vitamin/mineral panel for me. He declined and said he just wants to focus on the iron first, and as a hematologist, he doesn't usually deal with that anyway. So, when I go to the rheumatologist I'll ask if she'll do it, and if not, I'll go back to my primary (heading there for food allergy testing anyway). He's been the most supportive doctor I've had this past year and I'm sure he'll do it if I ask.

Perhaps the present doc could order the  labs and have them sent to your primary??

[Posterboy]

On 9/12/2020 at 5:40 AM, NeverLikedRollercoasters said:

Thank you again Posterboy. Are you a bot, by chance (hehe  just kidding). But you seem pretty knowledgeable.  I will look into that.  I'm assuming part of my fatigue issue is the iron overload as well, but who knows.

No problem for me.. call me a sissy if you will but I've never been able to swallow pills. Had a bad experience as a child and unless they're super tiny, I always choke on getting them down. So, I'm stuck with dissolvables, bilinguals, or liquid.

I expressed to the doctor that I think I may have some other deficiencies going on too and asked if he would order a full vitamin/mineral panel for me. He declined and said he just wants to focus on the iron first, and as a hematologist, he doesn't usually deal with that anyway. So, when I go to the rheumatologist I'll ask if she'll do it, and if not, I'll go back to my primary (heading there for food allergy testing anyway). He's been the most supportive doctor I've had this past year and I'm sure he'll do it if I ask.

Never Liked Roller Coasters,

I don't know how to to do a multiquote of a couple pages of a thread....see my previous comments....

I will post some of t them here for summary reference...

Here is what I said before....

 "B-Vitamin deficiencies don't happen in uncomplicated way (usually) they occur together....

See this article about a case of Pellagra in America...

https://casereports.bmj.com/content/12/9/e230972

I will quote the test results...

"Vitamin testing revealed normal B12 and folate levels but undetectable levels of thiamine, riboflavin and niacin. Her symptoms and signs resolved entirely with appropriate vitamin supplementation.

Pellagra in Italian means "rough skin" and hence the name that comes to us...

Note: they were diagnosed with Pellagra a CAPSTONE diagnosis but they had already developed Beri Beri and Pellagra Sine Pellgra (which is what happened to me) evidenced by undetectable levels of Riboflavin and Niacin."

It is me again....here is why B1 never gets low by itself....it needs FAD (Riboflavin) and NAD+ (NIacin) to be used by the body.

Here is a Sharecare slide show that summarizes these things well.

See slide 9.....

also from the Oregon State micronutrient  center on thiamine...

https://lpi.oregonstate.edu/mic/vitamins/thiamin

"In addition to the thiamin coenzyme (TPP), each dehydrogenase complex requires a niacin-containing coenzyme (NAD), a riboflavin-containing coenzyme (FAD), and lipoic acid"

So see you are low in Riboflavin and Niacin too because they are Co-enzyme(s) aka Cofactors for Thiamine utilization in the body.....if you have tested low in Thiamine....you can count on yourself being low in B2 (Riboflavin) and B3 (Niacin) too....hence your rash on your finger!

I self diagnosed myself with Pellagra.....but I only had Pellagra Sine Pellagra (limited) skin involvement.

Your body will synthesize Niacin from Tryptophan if you are eating a lot of meat.....so I never had skin lesions...but I had all the symptom's of Pellagra Sine Pellagra a Riboflavin deficiency.

So as not to make this thread reply too way, way, too long see this great article on a Riboflavin deficiency by gluten free works...

https://glutenfreeworks.com/health/category/nutrient-deficiency-symptoms/vitamins/water-soluble-vitamins/riboflavin/

I had angular cheilitis (leaky lips), geographic tongue, horrible mouth sores etc....

And all my doctor could tell/advise me was to stop licking my lips so much and my cracked lips would go away....

It (AC) never did...it only got worse until I took Riboflavin....and it has never came back!

I am just trying to pay it forward and help the next person in line...

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

Posterboy,

[Bebygirl]

On 8/24/2020 at 9:00 AM, NeverLikedRollercoasters said:

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.

I am so sorry you are going through all of this, so am I to a point, let me start with what I know from my situation, I am 53, have a mother that just passed away with lymphatic cancer, she was also an undiagnosed celiac, she had her thyroid inactivated (took some drink that caused it to shut off) and she had all the unusual signs for celiac but these ignorant doctors in Florida aren’t savvy enough to figure much out. I have been ill with this my whole life now that I look back, I currently have fatty liver, I had alopecia and dry hair until recently (I upped my Vitamin d to 20,000 IU a day for 15 days, and now stay on 5,000 IU twice a day. I have gallbladder issues (pain in upper right quadrant) when I eat an egg or fatty meal. Although my gas is gone post gluten free diet, I still am concerned as you are, that what you might need to see is a cancer doctor, I don’t feel you need to get an expensive and invasive biopsy just to be reassured you have Celiac, I do think you have Gluten Intolerance and isn’t that enough to know right now, along with your body has to be fighting something, if you look at all the other signs and don’t see relief from a gluten-free diet, a fat free diet, and perhaps seeing if you might be allergic to other foods (dairy, etc. who knows). I do strongly suggest you have an allergy test and then consult a cancer doctor, it runs in both our families, so it is best to start with the possible cancer connection along with allergist, and work your way down the list. You aren’t alone, I am on my way to the doctor today for my gallbladder pain, due to dark urine and pain, I think I have either a gallstone or kidney stone. All of this is most likely due to 1. The poor education of the medical community about celiac, gluten intolerance and 2. United healths choice of providers. I only moved to this state two years ago, and it definitely has the worst doctors I’ve ever seen, case in point one doctor told me I just needed to wash my hair more often and my Alopecia would go away. It was celiac and vitamin d deficiency and I keep it at bay with supplements, but I don’t know about the possible cancer, to which is my next step after I see today’s doctor about the gallbladder. I know this might not be of much help, but I think you should know, it is something we all are dealing with, your case sounds like mine, so you aren’t alone, and please make sure that you look up your toothpaste, deodorant, dish washing liquid, laundry liquid, because they are also contaminated with gluten and Tocopherol which is vitamin E derived from wheat germ. No need to throw away anything that can be washed, but what are you washing them in? Because of this dilemma we are in, I have had to DIY my own health and beauty items, trust me, in the long run you will save money and health on doing it yourself, but you won’t save time, and I am not caring about time, I am tired of being sick, and if I could, I would go back to Houston and get a real doctor and be done with a lot of this stuff. Also, make sure you got a gluten intolerance test. They also have genetic testing, but my money is on getting tested for cancer first, then allergist, then gluten intolerance in that order, since you’ve had other tests. Once you make sure you got rid of all the gluten items in your home, and you don’t eat out, your intestines should heal and you will start to feel better, but not if it’s something else, on top of it all. Post a response anytime, I will post back after my visit today if I have anything of value to offer. Hang in there, you’re not the only one suffering.

[DJFL77I]

Where are you in FL??  My GI dr diagnosed me in about 3 months here.. but I switched to a highly rated GI doc in  my town.. seeing him next mont.. 

[cyclinglady]

1 hour ago, Bebygirl said:

I am so sorry you are going through all of this, so am I to a point, let me start with what I know from my situation, I am 53, have a mother that just passed away with lymphatic cancer, she was also an undiagnosed celiac, she had her thyroid inactivated (took some drink that caused it to shut off) and she had all the unusual signs for celiac but these ignorant doctors in Florida aren’t savvy enough to figure much out. I have been ill with this my whole life now that I look back, I currently have fatty liver, I had alopecia and dry hair until recently (I upped my Vitamin d to 20,000 IU a day for 15 days, and now stay on 5,000 IU twice a day. I have gallbladder issues (pain in upper right quadrant) when I eat an egg or fatty meal. Although my gas is gone post gluten free diet, I still am concerned as you are, that what you might need to see is a cancer doctor, I don’t feel you need to get an expensive and invasive biopsy just to be reassured you have Celiac, I do think you have Gluten Intolerance and isn’t that enough to know right now, along with your body has to be fighting something, if you look at all the other signs and don’t see relief from a gluten-free diet, a fat free diet, and perhaps seeing if you might be allergic to other foods (dairy, etc. who knows). I do strongly suggest you have an allergy test and then consult a cancer doctor, it runs in both our families, so it is best to start with the possible cancer connection along with allergist, and work your way down the list. You aren’t alone, I am on my way to the doctor today for my gallbladder pain, due to dark urine and pain, I think I have either a gallstone or kidney stone. All of this is most likely due to 1. The poor education of the medical community about celiac, gluten intolerance and 2. United healths choice of providers. I only moved to this state two years ago, and it definitely has the worst doctors I’ve ever seen, case in point one doctor told me I just needed to wash my hair more often and my Alopecia would go away. It was celiac and vitamin d deficiency and I keep it at bay with supplements, but I don’t know about the possible cancer, to which is my next step after I see today’s doctor about the gallbladder. I know this might not be of much help, but I think you should know, it is something we all are dealing with, your case sounds like mine, so you aren’t alone, and please make sure that you look up your toothpaste, deodorant, dish washing liquid, laundry liquid, because they are also contaminated with gluten and Tocopherol which is vitamin E derived from wheat germ. No need to throw away anything that can be washed, but what are you washing them in? Because of this dilemma we are in, I have had to DIY my own health and beauty items, trust me, in the long run you will save money and health on doing it yourself, but you won’t save time, and I am not caring about time, I am tired of being sick, and if I could, I would go back to Houston and get a real doctor and be done with a lot of this stuff. Also, make sure you got a gluten intolerance test. They also have genetic testing, but my money is on getting tested for cancer first, then allergist, then gluten intolerance in that order, since you’ve had other tests. Once you make sure you got rid of all the gluten items in your home, and you don’t eat out, your intestines should heal and you will start to feel better, but not if it’s something else, on top of it all. Post a response anytime, I will post back after my visit today if I have anything of value to offer. Hang in there, you’re not the only one suffering.

Please ask for a HIDA scan.  My gallbladder was non-functioning.  Never had stones.  The HIDA can determine if your gallbladder is actually squeezing and releasing bile.  An ultrasound will not catch a non-functioning gallbladder.  

Edited September 15, 2020 by cyclinglady

[Bebygirl]

On 9/12/2020 at 6:40 AM, NeverLikedRollercoasters said:

Thank you again Posterboy. Are you a bot, by chance (hehe  just kidding). But you seem pretty knowledgeable.  I will look into that.  I'm assuming part of my fatigue issue is the iron overload as well, but who knows.

No problem for me.. call me a sissy if you will but I've never been able to swallow pills. Had a bad experience as a child and unless they're super tiny, I always choke on getting them down. So, I'm stuck with dissolvables, bilinguals, or liquid.

I expressed to the doctor that I think I may have some other deficiencies going on too and asked if he would order a full vitamin/mineral panel for me. He declined and said he just wants to focus on the iron first, and as a hematologist, he doesn't usually deal with that anyway. So, when I go to the rheumatologist I'll ask if she'll do it, and if not, I'll go back to my primary (heading there for food allergy testing anyway). He's been the most supportive doctor I've had this past year and I'm sure he'll do it if I ask.

Oooh, I just put my supplements in a cafe bean grinder and add them to my smoothie (think shakes make it so easy)....makes faster work of it all...I take a lot, especially when I get glutened.

[DJFL77I]

how are you deficient in the first place

[NeverLikedRollercoasters]

On 9/12/2020 at 5:51 PM, frieze said:

Perhaps the present doc could order the  labs and have them sent to your primary??

I'll be seeing my primary this week and will ask for a full panel. He's on my side so he probably wont give me a hassle.

18 hours ago, Bebygirl said:

I am so sorry you are going through all of this, so am I to a point, let me start with what I know from my situation, I am 53, have a mother that just passed away with lymphatic cancer, she was also an undiagnosed celiac, she had her thyroid inactivated (took some drink that caused it to shut off) and she had all the unusual signs for celiac but these ignorant doctors in Florida aren’t savvy enough to figure much out. I have been ill with this my whole life now that I look back, I currently have fatty liver, I had alopecia and dry hair until recently (I upped my Vitamin d to 20,000 IU a day for 15 days, and now stay on 5,000 IU twice a day. I have gallbladder issues (pain in upper right quadrant) when I eat an egg or fatty meal. Although my gas is gone post gluten free diet, I still am concerned as you are, that what you might need to see is a cancer doctor, I don’t feel you need to get an expensive and invasive biopsy just to be reassured you have Celiac, I do think you have Gluten Intolerance and isn’t that enough to know right now, along with your body has to be fighting something, if you look at all the other signs and don’t see relief from a gluten-free diet, a fat free diet, and perhaps seeing if you might be allergic to other foods (dairy, etc. who knows). I do strongly suggest you have an allergy test and then consult a cancer doctor, it runs in both our families, so it is best to start with the possible cancer connection along with allergist, and work your way down the list. You aren’t alone, I am on my way to the doctor today for my gallbladder pain, due to dark urine and pain, I think I have either a gallstone or kidney stone. All of this is most likely due to 1. The poor education of the medical community about celiac, gluten intolerance and 2. United healths choice of providers. I only moved to this state two years ago, and it definitely has the worst doctors I’ve ever seen, case in point one doctor told me I just needed to wash my hair more often and my Alopecia would go away. It was celiac and vitamin d deficiency and I keep it at bay with supplements, but I don’t know about the possible cancer, to which is my next step after I see today’s doctor about the gallbladder. I know this might not be of much help, but I think you should know, it is something we all are dealing with, your case sounds like mine, so you aren’t alone, and please make sure that you look up your toothpaste, deodorant, dish washing liquid, laundry liquid, because they are also contaminated with gluten and Tocopherol which is vitamin E derived from wheat germ. No need to throw away anything that can be washed, but what are you washing them in? Because of this dilemma we are in, I have had to DIY my own health and beauty items, trust me, in the long run you will save money and health on doing it yourself, but you won’t save time, and I am not caring about time, I am tired of being sick, and if I could, I would go back to Houston and get a real doctor and be done with a lot of this stuff. Also, make sure you got a gluten intolerance test. They also have genetic testing, but my money is on getting tested for cancer first, then allergist, then gluten intolerance in that order, since you’ve had other tests. Once you make sure you got rid of all the gluten items in your home, and you don’t eat out, your intestines should heal and you will start to feel better, but not if it’s something else, on top of it all. Post a response anytime, I will post back after my visit today if I have anything of value to offer. Hang in there, you’re not the only one suffering.

Thank you @Bebygirl. I have been tested for cancers of the marrow / bone, and any other genetic mutations my hematologist recommended. All came back clean. Also, only one of my tests over the past year showed elevated white blood cells, but it was still in-range so I'm a little relieved that it doesn't seem to be that. Also, I'm aware of cosmetics being a source of cc and I've researched the few things I use and seem to be okay there. The only thing on my mind is my pup's food/treats, but lately, I'm super careful about handling those.  I'm not eating out anymore as I've been burned enough times to know better now.  Also, yes being intolerant is enough, but I really want to know if I'm actually causing damage to myself (certainly feels like it). I also want to be taken seriously by any new doctors / hospitals in the future and having that diagnosis is just helpful with that.  But really, I do have multiple things going on apparently with a new diagnosis of hemochromatosis. 

17 hours ago, DJFL77I said:

Where are you in FL

Tampa Bay area

16 hours ago, cyclinglady said:

Please ask for a HIDA scan

I've had 2 ultrasounds and 2 MRIs and both times they say my gallbladder looks fine and no blockages or kidney stones.  But I'll bring it up. I don't quite feel like I have an issue with my gallbladder at this point, but my mother had hers removed 30 years ago.

16 hours ago, Bebygirl said:

I just put my supplements in a cafe bean grinder

That's a great idea. How about it ruining the taste of the smoothie though?

16 hours ago, DJFL77I said:

how are you deficient in the first place

I don't have a clue. I'm just guessing it's mal-absorption at this point. But I think Posterboy is right and I might be deficient in other B vitamins too, maybe more.

 

 

Just an update for you all. I saw a rheumatologist/immunologist yesterday. She was very receptive and kind and questioned me a ton and listened to everything I had to say. She pretty much agreed that all my symptoms match celiac disease but basically said there's not a good way to diagnose unless I want to harm myself again.  Otherwise, she ordered a good panel of other autoimmune tests just to rule out other things, and she wants to do the food allergy testing there instead of at my primary doctor. So, forward movement!  Also, 3 days of B1 and I'm starting to feel like I'm healing finally, but still a ways to go. @Posterboy, I really appreciate all the info you share. I haven't picked up the other supplements yet. I may just wait until after I coax my doctor to order the vitamin tests.

[NeverLikedRollercoasters]

I know everyone is on pins and needles waiting for an update, so here it is.  

Confirmed diagnosis of hemochromatosis and had my first phlebotomy last friday. I have moderate damage to my liver and notes of iron in my vertebrae.  Doctor doesn't want to push it so we're doing them in 3 month intervals while checking my iron levels each time. He wants to get my ferritin around 50 from my current 160. 

I asked him if they'd be willing to run my scripts from my primary during the phlebotomy to check for vitamins and metals/minerals and he agreed, however, they couldn't run the vitamin B panels because they required special vials which they didn't have, so I'll have to run to the lab testing place to do those. Unfortunately, I'm in the process of switching insurance right now so I can't go until that happens. 

Everything came back normal except I'm deficient in Copper now.  So, to date that makes Vitamin D, B1, Copper deficiency. @Posterboy, just saw your blog post about that too.  I'm still sticking with Celiac/NCGS with HH. And possibly would be iron anemic if I didn't have HH? Who knows? What I do know is when I look at all my testing over the past year, 75% of them have red 'needs review' because something is out of range. This includes CBC, CMP, PTH, Vitamins, Iron testings.

Also had the rheumatologist visit and she checked me for some other stuff like C-Reactive protein, and ANA tests but those all came back negative. I'm a bit confused about the inflammation tests coming back negative because I certainly feel inflamed in my neck muscles and intestines. Been a long process getting to feel better. I'm still not there yet and my b-movements are not regular. I know there's something up in my small intestines still. And I just feel funky all around.

Also had food allergy testing done and not much came about from that except minor shellfish, dairy and wheat.

Mayo denied me on my current insurance, but we'll try again after the switch goes through.

 

[cyclinglady]

On 9/16/2020 at 2:46 AM, NeverLikedRollercoasters said:

 

I've had 2 ultrasounds and 2 MRIs and both times they say my gallbladder looks fine and no blockages or kidney stones.  But I'll bring it up. I don't quite feel like I have an issue with my gallbladder at this point, but my mother had hers removed 30 years ago.

A HIDA scan checks for a non-functioning gallbladder.  The other two tests do not.  I never had stones.  Everything always looked good until I had a HIDA scan.  It did not squeeze properly making it pretty difficult to digest fats.  

[NeverLikedRollercoasters]

12 hours ago, cyclinglady said:

A HIDA scan checks for a non-functioning gallbladder.  The other two tests do not.  I never had stones.  Everything always looked good until I had a HIDA scan.  It did not squeeze properly making it pretty difficult to digest fats.  

This might have to wait until Mayo can get me in. Think is, I don't really eat anything fatty except maybe a steak once in a while. Furthermore, that stabbing pain near my gallbladder only hurts when I have a flare. And seems to be positively affected by PPIs which leads me to believe it's a duodenal ulcer. Can't really be sure. I recall the first time I felt it there was the day after my last endoscopy where the previous day I ate some bread for one day for the gluten challenge, although my GI didn't mention anything about it from the procedure. But it feels exactly like my other confirmed stomach ulcer that I have on the upper left side, really sharp acute stabbing pain.  I'll be sure to mention it along with all my other ailments when I get in there.  Thank you.

[frieze]

Hemachromatosis can cause gall bladder AND pancreas issues

[NeverLikedRollercoasters]

21 minutes ago, frieze said:

Hemachromatosis can cause gall bladder AND pancreas issues

Apparently it can cause quite a few issues. One thing I'm confused about is my doctor said it typically takes years to accumulate and cause damage to organs. I asked why my iron levels were fine in February, and my ct scan a year ago didn't show any issues in my liver and he didn't really have an answer for me. But my GI symptoms started long before this was recently found, so who knows?

[DJFL77I]

You mentioned you drank a lot when you were younger?

[NeverLikedRollercoasters]

13 minutes ago, DJFL77I said:

You mentioned you drank a lot when you were younger?

Entirely incorrect sir. Maybe 6 drinks in a week and no more than 3 in one day.

Edit: Never liked getting pee drunk to begin with. Maybe been 'drunk' twice in my life. Used to just like sippin' a beer (mostly Guiness). I could make 1 last 1/2 an evening.  Only had 1 drink in over 3 months now so I'm sure I'm not an alchy

[Posterboy]

On 10/1/2020 at 8:18 AM, NeverLikedRollercoasters said:

Entirely incorrect sir. Maybe 6 drinks in a week and no more than 3 in one day.

Edit: Never liked getting pee drunk to begin with. Maybe been 'drunk' twice in my life. Used to just like sippin' a beer (mostly Guiness). I could make 1 last 1/2 an evening.  Only had 1 drink in over 3 months now so I'm sure I'm not an alchy

On 9/29/2020 at 4:13 PM, NeverLikedRollercoasters said:

Everything came back normal except I'm deficient in Copper now.  So, to date that makes Vitamin D, B1, Copper deficiency. @Posterboy, just saw your blog post about that too.  I'm still sticking with Celiac/NCGS with HH. And possibly would be iron anemic if I didn't have HH? Who knows? What I do know is when I look at all my testing over the past year, 75% of them have red 'needs review' because something is out of range. This includes CBC, CMP, PTH, Vitamins, Iron testings.

Never Liked Roller Coasters,

Copper deficiency explains the symptom's best.....because I have hemachromatosis myself this is personal as they say.

I was late to Cooper......I will quote the original research so you can study it for your self.

https://science.sciencemag.org/content/356/6333/44 /tab-e-letters

It is buried in the article so I will quote from it...

"Some patients with celiac disease absorb too little dietary copper and become deficient(5, 6). In the original classification scheme, celiac disease would have been considered a toxic deficiency(3) similar to Wernicke’s encephalopathy in which excessive ingestion of ethanol induces thiamine deficiency. Now some celiac disease can be considered a three-way cooperation among an infection, a toxin and a deficiency."

It is best to take Zinc/Copper in combination so you don't get out of whack on your ratios...

When you buy a Zinc Combo it is usually sold 50mg/2mg so the ratios are preserved.....the ratio might be as important as the deficiency.

It explains your Hemochromatosis too!

Here is the research for you too read yourself.

When we eat high fructose diets or IE high CARB diets it depletes our  copper the same way it would deplete our Thiamine...

See this research that explains the connection...entitled

"The fructose–copper connection: Added sugars induce fatty liver and insulin resistance via copper deficiency"

https://insulinresistance.org/index.php/jir/article/view/43/142

And once low in Copper your Iron excess problems develop....IE Hemochromatosis

See this research entitled...

"Iron excess treatable by copper supplementation in acquired aceruloplasminemia: a new form of secondary human iron overload?"

https://ashpublications.org/blood/article/114/11/2360/25848/Iron-excess-treatable-by-copper-supplementation-in

Eating Liver as Knitty Kitty recommends is a good way to get Copper in your diet.

I prefer Cashews and Sunflower Seeds....but each to his own preferences...

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

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

It is my hope that at least some (one) other fellow sufferer(s) has found hope/help in the things I have suffered with/and shared about how /what helped me. Praise bee to God!

It only takes one to make a difference!

Don’t every stop being your own advocate!

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish/sufferer), by the comfort wherewith we ourselves are comforted of God.”

Posterboy by the grace of God,