Been severely let down and at my wits' end

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 10:49 AM, DJFL77I said:

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 ?

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 ""

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Been tested for Hep.. negatory. Also, just got Hep A/B vaccines last month too but I've been told there's no reaction to those. No contrast for either the CT and the MRI. My CT scan from September last year only showed a splenic cyst and no remarks to my liver. But seriously about the alcohol, I don't over indulge but maybe for my low weight it could be construed that way. I'm hanging onto the gluten issue because the two times I intentionally ate food containing it, I got sick the next day for 2 weeks each time. And, I don't do restaurants now because the only two times I didn't get sick from them were from 1 that is 100% gluten free restaurant, and the other had great reviews from celiac diagnosed people and I had a thorough conversation with the waitress and was assured they use separate grills. All of the other times I had a reaction.

Do you know much about iron testing. I'm confused why my total iron and saturation are out of range, but by ferritin is on the lower side of normal. Is it possible I'm actually anemic but is masked by the saturation? I can't find much info about this and most that I find about hemochromatosis all have high ferritin.

DJFL77I · August 27, 2020

When i first went in after stomach issues began in FEB... Dr ordered bloodwork and a CT Scan...

CT scan looked normal...... Bloodwork looked good.. only for elevated liver enzymes.. a that point Dr thought it was hepatitis B... because i told him I was in Thailand on vacation 2 years earlier and he said its very common there... Then he ordered a ton of tests all related to Liver... Everything came back negative.. and my enzyms dropped by 50%+ on their own back to normal.. at that point the Dr was like everything looks great...

Then we moved on to the stomach which was still bothering me... so he said lets look in...

Thats when the biopsy found celiac... my enzymes were most likely elevated because of the Gluten which we didn't know about previously...

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 11:05 AM, DJFL77I said:

Thats when the biopsy found celiac...

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Were you still eating gluten? By the time I got the biopsies taken I was 7-8 months gluten-free.

DJFL77I · August 27, 2020

On 8/27/2020 at 11:04 AM, NeverLikedRollercoasters said:

No contrast for either the CT and the MRI.

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whoever ordered a ct scan and didn't tell you to take contrast is a complete fool.. its basically worthless without contrast.. the contrast is what makes everything visible

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 11:10 AM, DJFL77I said:

whoever ordered a ct scan and didn't tell you to take contrast is a complete fool.. its basically worthless without contrast.. the contrast is what makes everything visible

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I agree.. this is exactly why I posted with this title lol.

DJFL77I · August 27, 2020

On 8/27/2020 at 11:04 AM, NeverLikedRollercoasters said:

Do you know much about iron testing. I'm confused why my total iron and saturation are out of range,

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there is a thing with liver that causes you to store too much iron.. only way to treat that is by donating blood often to lower iron levels.. theres a test for it

usually celiac will have lower iron or basically normal

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 11:13 AM, DJFL77I said:

there is a thing with liver that causes you to store too much iron.. only way to treat that is by donating blood often to lower iron levels

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I understand.. been doing some reading, but this same test in january came back all in-range. So, again, this is new since January, and probably closer to starting in March-July.

DJFL77I · August 27, 2020

they may have just missed it because of the lack of contrast

i had oral and IV contrast... and even after i arrived.. they made me drink another cup full of that crap right before the procedure...

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 11:17 AM, DJFL77I said:

they may have just missed it because of the lack of contrast

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Maybe, but also had ultrasound before the CT with no remarks. 2nd ultrasound a month ago remarked on it which prompted the MRI.

DJFL77I · August 27, 2020

i dont think you can develop fatty liver in just a few months ?

Heavy drinkers usually first develop symptoms during their 30s or 40s. Fatty liver often causes no symptoms. In one third of people, the liver is enlarged and smooth but is not usually tender.

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 11:22 AM, DJFL77I said:

i dont think you can develop fatty liver in just a few months ?

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I have no clue. All I know is all these issues began with GI symptoms/rash/weird toenail. If it is fatty, I'm assuming it's minimal at this point so maybe it's just early on? Never had any pain on my right side until the day after my last endo where I had a really sharp pain in a single small spot. Just assumed I developed a duodenal ulcer after eating bread for that endo (but may possibly be my liver). If it is my liver, i'd think my whole torso would be in pain, no? I'm still at 0 answers here a year later.

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 11:22 AM, DJFL77I said:

i dont think you can develop fatty liver in just a few months ?

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By the way, I can find some medical papers and some people who have developed secondary hemochromatosis after a celiac diagnosis and going gluten-free. But again, I want an answer but really trying my hardest not to self-diagnose.

DJFL77I · August 27, 2020

That's one of the things he tested me for.. I think there's a gene for it..

my iron levels were normal but towards lower normal .. still don't think you have celiac.. May be gluten sensitivity.. .

You can order an online test. Did they take a blood test?

Mine was diagnosed via biopsy first.. then the Dr took a blood test after ...

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 11:52 AM, DJFL77I said:

That's one of the things he tested me for.. I think there's a gene for it..

my iron levels were normal but towards lower normal .. still don't think you have celiac.. May be gluten sensitivity.. .

You can order an online test. Did they take a blood test?

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Hmm.. not yet. Just curious why you totally rule out celiac? Just because my biopsy didn't show it?

I'm pretty sure I can talk my doctor into ordering the gene test tomorrow for hemochromatosis. I already know I have the DQ8 gene for celiac. And I know it's possibly just sensitivity, but damn I get so sick with all the classic symptoms plus some.

DJFL77I · August 27, 2020

A simple blood test should show if you have the anti bodies

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 12:28 PM, DJFL77I said:

A simple blood test should show if you have the anti bodies

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I had to order the blood test myself after 8 weeks gluten-free because my primary (same one who ordered the CT) refused to order it for me when it was crucial (should have had them write it in my charts that they refused). I was way too sick at the time. The only thing that had any effect on improving my health was taking it upon myself to go gluten-free. I didn't realize at the time I had to be eating gluten consistently for an accurate result so that was my bad at the time. If I had continued, I would surely have ended up in the ER. And now, I'm terrified of doing a gluten challenge for 6 weeks to get an accurate reading based on my past experiences so far, especially now that I have other things popping up. I could be totally wrong, but my 'gut instinct' (excuse the pun) is telling me this might all be tied together.

DJFL77I · August 27, 2020

Does your stool look normal

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 2:14 PM, DJFL77I said:

Does your stool look normal

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Long answer. As a child up until about mid 30s I would go multiple times in the morning, back to back. Always on the softer side. Lots of upset stomachs but not usually D. Then, when my gut issues started about 5 years ago, I became somewhat normal by going 1 time shortly after waking in the morning.. still soft. Not really sure why it changed then but it did.

Past 2 years, I noticed after almost every meal , my lower abdomen would get bloated almost right away.

Past year, same except when I get sick. Then it's usually D off/on for 2 weeks, then C for few days. The C would be accompanied by some mucus when I can get it out. One time I saw some blood kind of hidden in the stool. That was right before I started the 2 week gluten challenge for my last endo. That ruined it and we had to bump up my endo and add on a colonoscopy. That's why I only got 1 day to start the challenge. That 1 day resulted in the worst migraine of my life the next day.

Now, these past 4 weeks that I've been feeling really bad (after the 3 weeks that I believe I got CC'd with gluten and felt bad) it's been near constant C.

So, short answer is no I don't think it's normal and the color changes sometimes to a pale color. Sometimes accompanied by a bit of mucus.

ravenwoodglass · August 27, 2020

On 8/27/2020 at 11:08 AM, NeverLikedRollercoasters said:

Were you still eating gluten? By the time I got the biopsies taken I was 7-8 months gluten-free.

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If you had been gluten free for 7-8 months your tests would be negative. If you feel you can't do a gluten challenge you will just have to go with your bodies diagnosis. That doesn't mean that you may not have something else going on as well. Also liver issues are common with celiac and may resolve on their own. If you don't want to challenge just go with being celiac avoiding all that anyone who is celiac or has gluten intolerance would avoid. If you haven't read the 'Newbie 101' thread in the Coping section for all you need to do to be safe. You may want to drop dairy and soy for a bit to make sure those are not an issue. Add them back in one at a time after you are feeling better. It takes some time to heal so try to be patient.

ravenwoodglass · August 27, 2020

On 8/27/2020 at 2:33 PM, NeverLikedRollercoasters said:

Long answer. As a child up until about mid 30s I would go multiple times in the morning, back to back. Always on the softer side. Lots of upset stomachs but not usually D. Then, when my gut issues started about 5 years ago, I became somewhat normal by going 1 time shortly after waking in the morning.. still soft. Not really sure why it changed then but it did.

Past 2 years, I noticed after almost every meal , my lower abdomen would get bloated almost right away.

Past year, same except when I get sick. Then it's usually D off/on for 2 weeks, then C for few days. The C would be accompanied by some mucus when I can get it out. One time I saw some blood kind of hidden in the stool. That was right before I started the 2 week gluten challenge for my last endo. That ruined it and we had to bump up my endo and add on a colonoscopy. That's why I only got 1 day to start the challenge. That 1 day resulted in the worst migraine of my life the next day.

Now, these past 4 weeks that I've been feeling really bad (after the 3 weeks that I believe I got CC'd with gluten and felt bad) it's been near constant C.

So, short answer is no I don't think it's normal and the color changes sometimes to a pale color. Sometimes accompanied by a bit of mucus.

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For the C after a gluten D episode something like a stool softener may help. Ask the pharmacist for recommendations of what is for sure gluten free. You also may want to have them note in your file that gluten is a no so they will check for it in any scripts you may need filled.

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 2:56 PM, ravenwoodglass said:

You may want to drop dairy and soy for a bit to make sure those are not an issue.

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Thank you. I already dropped dairy because that immediately gives me explosive D. The soy, I was vegetarian for almost 20 years until 2 years ago. Thought the tofu was screwing with me originally, but then the beer too. So, I'm not sure about soy, although about 4 weeks ago, I cooked with certified gluten-free soy sauce and that's when I started feeling bad again, so I do wonder about soy as well.

As of right now, I'm living/eating like a celiac without the diagnosis.

ravenwoodglass · August 27, 2020

On 8/27/2020 at 3:03 PM, NeverLikedRollercoasters said:

Thank you. I already dropped dairy because that immediately gives me explosive D. The soy, I was vegetarian for almost 20 years until 2 years ago. Thought the tofu was screwing with me originally, but then the beer too. So, I'm not sure about soy, although about 4 weeks ago, I cooked with certified gluten-free soy sauce and that's when I started feeling bad again, so I do wonder about soy as well.

As of right now, I'm living/eating like a celiac without the diagnosis.

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It may be a good idea to drop that as well. It may not be the case for you but soy binds me up for days. If you can go with as much whole foods as possible it would be a good idea. It is a drag having to cook everything yourself but it is worth it in the long run.

NeverLikedRollercoasters · August 27, 2020

On 8/27/2020 at 3:09 PM, ravenwoodglass said:

It may be a good idea to drop that as well. It may not be the case for you but soy binds me up for days. If you can go with as much whole foods as possible it would be a good idea. It is a drag having to cook everything yourself but it is worth it in the long run.

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Yeah, I think I will drop it for now (but I miss all the things so much). I've always wanted to get good at cooking so this has kind of forced me to. I rather enjoy it really.

ravenwoodglass · August 27, 2020

On 8/27/2020 at 3:10 PM, NeverLikedRollercoasters said:

Yeah, I think I will drop it for now (but I miss all the things so much). I've always wanted to get good at cooking so this has kind of forced me to. I rather enjoy it really.

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Good. You may be able to add both soy and dairy back in once you heal. I tolerate dairy fully now but soy is still a no go. Cooking can be fun and quite a creative pastime. I hate doing dishes so I have become the 'Tin Foil Queen'. Amazing how much can be wrapped in foil and tossed in a toaster oven.

Edited August 27, 2020 by ravenwoodglass

knitty kitty · August 28, 2020

I'll say it again.....

Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies. It's rare to have a deficiency in just one vitamin or mineral in Celiac Disease.

"Niacin for treatment of nonalcoholic fatty liver disease (NAFLD)"

https://www.lipidjournal.com/article/S1933-2874(19)30290-9/fulltext

And stay away from high fructose corn syrup (soda pop) because HFCS is processed through the liver just like alcohol.

😸 P.S. low tryptophan (a form of niacin) is associated with low ferritin....

Edited August 28, 2020 by knitty kitty
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