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thorn

Will my appetite ever come back?

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Hello again, everyone. I hope it's okay that I ask for some more advice. I am trying to be patient, as I've only been gluten-free since december 16th, but I can't deny I am nervous about a few things. 

I took some blood tests as per my doctors request, and I just got the results back for them today. I do not know everything that was tested for, but I know among other things it included iron levels, D vitamin, and B12, as well as how my intestine was functioning. I know it did not test for vitamin B1, since I asked my Dr. about this. According to my doctor, the only major thing was that I am incredibly low on vitamin D, and I've been prescribed a strong D vitamin to be on for 3 months.

Thanks to replies to my last post, I found out the gluten-free oats I was eating for breakfast were what was making me nauseous day in and day out, and I've since replaced them with a small bowl of white rice instead. I felt immediately better swapping out oatmeal for rice, and most of my nausea has subsided now. However, I still don't feel hungry much of the time, and the smell of cooked food still makes me queasy. I'm still not eating much, and I know I'm not getting the nutrients I need from what I do eat throughout the day. I miss food very much, to the point that I daydream about eating meals most of the day. What I am currently eating is white rice, some gluten free crackers, a smoothie made from banana, pineapple, and coconut, and apple sauce/apple jam with no added sugar. The latter is eaten straight from the jar with a teaspoon.

I also still get nauseous if I talk for an hour or more, and I'm not sure why, or if any of you have experienced this? I miss being able to speak to my friends and family.

My main question though, is will my appetite ever come back? Do I just need to give it time, and be patient, and try to eat a little more every day? Or should I ask my doctor for help, since I'm worried I'm still losing weight?

Thank you all for reading, I hope the post was not too messy.

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Celiac.com Sponsor (A8):

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It's been a little over a month for you, but it can take two years to recover:

Keep a food diary for other foods that may be causing you issues, for example main celiacs can't have dairy until their guts are fully healed. 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Thorn,

Look into the Autoimmune Paleo diet.....

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

And the Low Histamine Diet....

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

 

I'm not surprised by your doctor's reaction.  Doctors are trained to prescribe pharmaceuticals.  Your sick body is not deficient in pharmaceuticals.  Your body is deficient in vitamins.  Doctors frequently overlook thiamine deficiency outside of alcoholism.  Even in hospital settings, if thiamine deficiency is a chance, doctors will administer thiamine instead of testing for it. There's no toxicity for thiamine.  It's safe even in high doses.

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

And this article will explain about why you're short of breath when talking.  Thiamine is needed for respiration.

https://www.hormonesmatter.com/dysautonomia-hypoxia/

And...

https://www.hormonesmatter.com/?s=Thiamine+supplementation

 

Remember vitamin deficiencies rarely occur singly. Usually there are deficiencies across the board, so a good B Complex and a multivitamin with minerals might help. 

Hope this helps.

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14 hours ago, knitty kitty said:

Thorn,

Look into the Autoimmune Paleo diet.....

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

And the Low Histamine Diet....

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

 

I'm not surprised by your doctor's reaction.  Doctors are trained to prescribe pharmaceuticals.  Your sick body is not deficient in pharmaceuticals.  Your body is deficient in vitamins.  Doctors frequently overlook thiamine deficiency outside of alcoholism.  Even in hospital settings, if thiamine deficiency is a chance, doctors will administer thiamine instead of testing for it. There's no toxicity for thiamine.  It's safe even in high doses.

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

And this article will explain about why you're short of breath when talking.  Thiamine is needed for respiration.

https://www.hormonesmatter.com/dysautonomia-hypoxia/

And...

https://www.hormonesmatter.com/?s=Thiamine+supplementation

 

Remember vitamin deficiencies rarely occur singly. Usually there are deficiencies across the board, so a good B Complex and a multivitamin with minerals might help. 

Hope this helps.

Hello again, and thank you very much for the response.

I've read through the articles you sent me on AIP and the Low Histamine diet, and I will take them into consideration. I'm still waiting to hear back about seeing a nutritionist, so I don't know how much I want to do without hearing from them. I'm going to see how things go, but I will be keeping both in mind while choosing foods. As far as my doctor though, I'm not sure it's the same here as it is in the US. I live in Norway, and we do have a different healthcare system. I may be young and naive, but I don't believe my Dr. is just trying to prescribe medications for me. The blood tests I did tested for vitamins (not all, but at least some?), and according to my Dr. I am only deficient in vitamin D. I'm not saying I believe them 100% (I know I have iron-deficiency anemia and my Dr. said my iron levels were fine, which has me a bit suspicious) but I want to trust my doctor.

Also, while I appreciate the articles re: shortness of breath while talking, that is not what I am experiencing. I used to hardly be able to speak for a few minutes, and it has gotten better to where I can now speak for 45 minutes to an hour, and then I have to stop. But I do not have shortness of breath, I get nauseous, and get that "lump in your throat" feeling. It goes away eventually, but it doesnt 'reset' as the day goes on, so I still cannot speak much after the initial nausea.

I will look into getting a B-complex, since I know they sell it at the pharmacy down the road. I'm not sure what kind of multivitamins they have, and whether or not they are with minerals (or if all of them are?) so I'm going to have a look. I'll have to check the Norwegian brands.

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Hi thorn,

I second the low histamine autoimmune paleo diet. There's a list out there for "whole 30, low histamine" which is essentially exactly this; a good place to start if you're feeling overwhelmed.

I would get ill when I talked too much as a consequence of mast cell activation syndrome, which is common alongside celiac disease. It's a type of white blood cell that gets.. uppity. When I get that talking symptom now, it's usually after I've been eating too many foods (or doing other activities/taking supplements) that cause histamine to build-up so I'm starting to get overloaded; it takes 2-3 weeks for histamine to build up enough to cause me symptoms, and subsequently that long to flush out of your body, so like Scott said, give it some time. I can't do oats, either. Or quinoa. Literally had rice pudding with coconut milk for dinner last night, haha.

I rarely get those flares anymore, but when I do I take extra antihistamines, especially if I know I have to speak a lot while already flaring. They're a bandaid until I recover. I'll take a combo of Benadryl and Pepcid and Ibuprofen right before the activity, to bring back down to normal the chemicals my mast cells drive up. Prescription options for my nausea are Zofran or Reglan as every other nausea medicine makes me worse. Zofran works on the exact chemical the mast cells drive up but it's hard to get, but Reglan works for a lot of us too. Whether you're having histamine issues, MCAS, or another issue, the best natural things I've found for nausea are ginger, and peppermint tea. When I've had dangerous losses of appetite my doctor gave me Megace, or a short course of cyproheptadine, to get it back up; those worked within just a few days. You've got a lot of options.

Bananas and pineapple are huge histamine triggers, so if you're considering the autoimmune low histamine diet, try swapping them out for now.

If you're able to get tested for B1, please ask for it. Get tested for as many vitamins as they'll let you, you'd be amazed the things we're missing. Doctors also might not tell you of subclinical deficiencies. Mine didn't.

A nutritionist is a GREAT idea, they will be able to help you take the right combo of vitamins so that you don't worsen one thing trying to treat another. I have to take very specific combinations of B vitamins regularly, and a different combo of all vitamins when mast cells flare. If you address potential histamine or MCAS over the next few weeks and start to feel better by the time you see your nutritionist, that's critical information for them to know, also. You can get a good game plan going and prevent the preventable. Good luck! All of your problems sound very treatable, don't worry ☺️


Been at this 20 years. The usual. 🙃

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20 hours ago, raspberryfirecracker said:

Hi thorn,

I second the low histamine autoimmune paleo diet. There's a list out there for "whole 30, low histamine" which is essentially exactly this; a good place to start if you're feeling overwhelmed.

I would get ill when I talked too much as a consequence of mast cell activation syndrome, which is common alongside celiac disease. It's a type of white blood cell that gets.. uppity. When I get that talking symptom now, it's usually after I've been eating too many foods (or doing other activities/taking supplements) that cause histamine to build-up so I'm starting to get overloaded; it takes 2-3 weeks for histamine to build up enough to cause me symptoms, and subsequently that long to flush out of your body, so like Scott said, give it some time. I can't do oats, either. Or quinoa. Literally had rice pudding with coconut milk for dinner last night, haha.

I rarely get those flares anymore, but when I do I take extra antihistamines, especially if I know I have to speak a lot while already flaring. They're a bandaid until I recover. I'll take a combo of Benadryl and Pepcid and Ibuprofen right before the activity, to bring back down to normal the chemicals my mast cells drive up. Prescription options for my nausea are Zofran or Reglan as every other nausea medicine makes me worse. Zofran works on the exact chemical the mast cells drive up but it's hard to get, but Reglan works for a lot of us too. Whether you're having histamine issues, MCAS, or another issue, the best natural things I've found for nausea are ginger, and peppermint tea. When I've had dangerous losses of appetite my doctor gave me Megace, or a short course of cyproheptadine, to get it back up; those worked within just a few days. You've got a lot of options.

Bananas and pineapple are huge histamine triggers, so if you're considering the autoimmune low histamine diet, try swapping them out for now.

If you're able to get tested for B1, please ask for it. Get tested for as many vitamins as they'll let you, you'd be amazed the things we're missing. Doctors also might not tell you of subclinical deficiencies. Mine didn't.

A nutritionist is a GREAT idea, they will be able to help you take the right combo of vitamins so that you don't worsen one thing trying to treat another. I have to take very specific combinations of B vitamins regularly, and a different combo of all vitamins when mast cells flare. If you address potential histamine or MCAS over the next few weeks and start to feel better by the time you see your nutritionist, that's critical information for them to know, also. You can get a good game plan going and prevent the preventable. Good luck! All of your problems sound very treatable, don't worry ☺️

Hello raspberry, and thank you so much for the reply! Oh my goodness!

First of all, I want to thank you for addressing the nausea when speaking. I've been trying to find information on it for months now, and all I've found has been anxiety related (nausea when speaking in front of a crowd and such) and I'm so glad I'm not alone!! Even though it sucks that you have to deal with this too, knowing someone else has this too makes me feel like I'm at least not going crazy... Thank you!!!

I'm definitely going to look into the "whole 30, low histamine" thing you mentioned. I am admittedly rather overwhelmed, trying to do all the research by myself, so pointers like this are a huge help.

I'm going to bring up the nausea medications with my doctor when I see her next, as well as asking if there are more blood tests and the like we can do. I may try to bring up mast cell activation syndrome as well, though I'm unsure if it is recognized where I live (Norway) and if it is, how it translates... Thank goodness for Google! I also really hope we have some of the medications for appetite here that you mentioned... I haven't had dinner in almost 3 months now, so I think it is reasonable to ask for some help by now 😅

I'm going to try and buy a journal for food + mood stuff soon so I can help keep track of info for when I do see the nutritionist, but we just got new covid regulations here so I may have to keep notes digital till things let up.

Also, thank you for saying my problems sound treatable! I've been worrying my head off, so it's a relief to hear it should be fixable, at least for the most part!

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Congratulations on getting a diagnosis! And yes, things will get easier. But the first few months will be rough. You most likely are still getting glutened and not realizing it, either by things in your kitchen that haven't been replaced yet, such as cutting boards, non-stick pans, the toaster oven, or any other human that shares your cooking space, or the stress of having to learn a completely new lifestyle which could be making even the idea of eating pretty scary.

I can tell you that it took me about four months to stop making mistakes when I first went gluten free. There are sooooo many foods out there that "should" be gluten free according to their ingredients, but they aren't. But after you get good at this, you will feel so much better that you won't even care about all of the things you can't have. 

When it comes to vitamin deficiencies, yeah, a lot of them will go away on their own as long as you're eating a wide variety of foods and not purposefully excluding anything completely. Vitamin D is actually one of those deficiencies that many of us these days have simply because we don't spend as much time out in the sun as our ancestors did and is not going to go away on its own. But it is difficult to "fix" with supplements because it is very easy to overdue it. Too much vitamin D can cause kidney damage so do your own research and make sure that some numbnutz isn't telling you to take a dangerously-high dose, which most people who supplement are probably doing. 

But the best advice I can give you is to find a way to look at going gluten free in a positive light. So for me, I convinced myself that it was a fun adventure into cooking and went a little wild with trying new foods. (It was an expensive but fun way to gain a few pounds.) But cooking with raw ingredients from scratch is one way to avoid a lot of the problems in our industrialized food chain where gluten could be hidden in "natural flavors" or picked up in a shared food processing plant. 

Though being gluten free is never going to be easy when you leave your own house, you will learn tricks that will get you through each day and eventually, your new habits and routines will be so normal to you that you'll forget what it was like before.

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1 hour ago, AlwaysLearning said:

Congratulations on getting a diagnosis! And yes, things will get easier. But the first few months will be rough. You most likely are still getting glutened and not realizing it, either by things in your kitchen that haven't been replaced yet, such as cutting boards, non-stick pans, the toaster oven, or any other human that shares your cooking space, or the stress of having to learn a completely new lifestyle which could be making even the idea of eating pretty scary.

I can tell you that it took me about four months to stop making mistakes when I first went gluten free. There are sooooo many foods out there that "should" be gluten free according to their ingredients, but they aren't. But after you get good at this, you will feel so much better that you won't even care about all of the things you can't have. 

When it comes to vitamin deficiencies, yeah, a lot of them will go away on their own as long as you're eating a wide variety of foods and not purposefully excluding anything completely. Vitamin D is actually one of those deficiencies that many of us these days have simply because we don't spend as much time out in the sun as our ancestors did and is not going to go away on its own. But it is difficult to "fix" with supplements because it is very easy to overdue it. Too much vitamin D can cause kidney damage so do your own research and make sure that some numbnutz isn't telling you to take a dangerously-high dose, which most people who supplement are probably doing. 

But the best advice I can give you is to find a way to look at going gluten free in a positive light. So for me, I convinced myself that it was a fun adventure into cooking and went a little wild with trying new foods. (It was an expensive but fun way to gain a few pounds.) But cooking with raw ingredients from scratch is one way to avoid a lot of the problems in our industrialized food chain where gluten could be hidden in "natural flavors" or picked up in a shared food processing plant. 

Though being gluten free is never going to be easy when you leave your own house, you will learn tricks that will get you through each day and eventually, your new habits and routines will be so normal to you that you'll forget what it was like before.

Hello, thank you so much for the reply! I really appreciate it.

I may be getting glutened still, but I'm not sure what from if that is the case. I've put away all of my old cookware (frying pans, toaster, cooking pot, cutting board) and cleaned my kitchen and fridge. I thankfully live alone and haven't had any guests since pre-cleaning, so no contamination from sharing the kitchen with anybody! I definitely think stress could have something to do with it, though. The only other sources of contamination I can think of off the top of my head are things like my cutlery, cup, bowls etc. But I always wash them well by hand before use?

Yeah, I'm currently trying to eat mostly natural foods, the only one I haven't been able to let go of are these gluten free crackers that are soy-based. Since the smell of food still makes me queasy, together with having a bad case of low appetite + early satiety, I'm relying on them a fair amount ahah... As far as I know, rules and regulations where I live (Norway) means things like gluten have to be listed in the ingredients on anything that may contain it, I haven't read through everything on it yet because I have a hard time parsing out legalese, but the info came from official government websites. So I think my crackers are safe, though I'm going to cut them out when my appetite is a bit better, since I would like to avoid processed foods entirely while I get myself sorted out.

And yeah, as far as vitamin deficiencies I'm not sure where I stand, since I'm unable to eat much, but I'm working on eating varied meals when I get better. I've been looking up a lot of recipes, and watched a lot of cooking videos, and I'm really excited to try and make gluten-free versions of what I've seen!! Or just make what I've seen, since a fair amount of the recipes are with gluten-free ingredients, haha. I can still get a bit down about what I can't eat sometimes, but like you say, it's a lot easier to deal with (and more fun!) when you think of it as an adventure or a fun challenge.

I am really hopeful to learn more as I go along, and I really appreciate your advice. Honestly, what I'm looking forward to the most is to get my appetite back, I have so much food I want to make and so many ingredients I want to try!!

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