I'm already miserable thinking this might be a possibility

[AnyBunny94]

I've had problems with my stomach all my life. Diagnosed with IBS, hiatal hernia, and gastroparesis. Lately, I've been sick all the time it seems no matter what I eat I get sick. I saw a specialist again (after years because I gave up on them since they are never helpful other than telling me to change my diet and "good luck") and she mentioned gluten intolerance. She said *maybe* it's not Celiacs (though they are going to test for that too) but the fastest/easiest way to tell is by restricting my diet for two weeks to being gluent free. 

I'm on day two and I already want to give up. I'm crying all the time because nothing I can eat is even remotely appetizing to me. I also am not a person who can sit here and force feed myself food I don't find tasty at all because I need to live. It doesn't work that way. I get about 5 bites in, realize what I'm eating is not something I'd normally eat or even like and stop eating entirely. I'm at a point right now (today) where I know if I could just have a good hearty meal like I'm used to I'd feel so much more emtionally sound and far less stressed but I can't do that. 

The prospect of never having most foods I love ever again due to this possible intolerance or actual disease is already making me not want to do anything. I've already opted out of eating at all instead of force feeding myself because when I do that I just feel sick. I had about five bites of plain turkey before realizing it's absolutely gross if you can't have it on a sandwich with a bunch of other stuff. I can't have a peanut butter sandwich. I can't have a burger. I can't have 90% of the food items currently in my house that I would normally eat as comfort food. All I can do is sit here, hate my life, and realize that if this is what the problem happens to be then I'm facing a life time of misery. 

I don't mean to be offensive to anyone who has celiacs or whatever but I can't see myself coping with this for any amount of time. I know people are like oh you get used to it or eventually you'll find foods you like etc but I really don't see that happening. I've already done the low fodmap diet (I had to do it for a month at one point) and by the end of it I was going absolutely insane. I can't imagine living that way and in that entire month there wasn't one second of one day where I wanted to give up and eat something off of the diet list because I couldn't take it anymore. Gluten free is even more restictive than that and I can't even make it to day three without losing my mind. 

I'm looking at three options which are, be miserable and force feed myself a diet of food I don't want to eat for the rest of my life, eat whatever I want and be miserable and sick for the rest of my life, or eat so minimally that I'm starving all the time and irritable and ruin my stomach more. There seems to be no middle ground on any of this and trust me I've had many many years to attempt to figure this all out. I've cut out diary almost entirely already, I can't have eggs anyway because I'm allergic to them (which is difficult enough without following a restrictive diet). I don't do caffeine (also very hard I was a coffee addict and cutting that out took so much time and patience and I still cheat every so often with it because I miss it so much). This weird idea that if I do it long enough I'll magically be okay with it does't fit. Not to mention it's expensive and way way above my income level. Everything around here that's gluten free is like 4$ more than the normal non-gluten stuff so I'd be looking at starvation anyway just because I can't afford to eat things that I normally eat. 

I don't know what to do and I'm dreading getting these tests and hearing "Oh yeah it's Celiacs" because I pretty much know I'll more than likely ignore the disagnosis eventually, give myself stomach cancer, and die when I'm 45 because I can't see myself leading such a restrictive life. If I can't do this for two weeks how am I supposed to do it until I'm 90? 

[trents]

Welcome to the forum, AnyBunny94!

I think you need to take one step at a time. First, you need to find out whether or not you have celiac disease. The first stage of testing for celiac disease involves a simple blood draw and lab analysis to check for certain antibodies that are characteristic of celiac disease. The second stage of testing involves an endoscopy and biopsy of the small bowel lining to check for damage to the villi that line the small bowel. The good news in your case is that both stages require you to be eating regular amounts of gluten. So, I disagree with the strategy advised by your physician to start by trialing a gluten free diet. If you don't have celiac disease, you may have NCGS (Non Celiac Gluten Sensitivity) for which there is not test available yet. Celiac disease must first be ruled out. Then you would need to trial a gluten free diet for for a couple of months at least to see if symptoms improve. But again, find out what you are dealing with first and then worry about the impact on your eating habits. It could be you have neither celiac disease or NCGS. Take one thing at a time.

Gluten free eating does not have to be expensive. There are plenty of mainstream food choices that don't contain gluten. It would mean, however, that you would need to avoid anything made from wheat flour, barley or rye. The focus would be on meat, fruit, veggies and dairy. I know that's not what you want to hear but that is reality.

Edited December 24, 2022 by trents

[AnyBunny94]

4 hours ago, trents said:

Welcome to the forum, AnyBunny94!

I think you need to take one step at a time. First, you need to find out whether or not you have celiac disease. The first stage of testing for celiac disease involves a simple blood draw and lab analysis to check for certain antibodies that are characteristic of celiac disease. The second stage of testing involves an endoscopy and biopsy of the small bowel lining to check for damage to the villi that line the small bowel. The good news in your case is that both stages require you to be eating regular amounts of gluten. So, I disagree with the strategy advised by your physician to start by trialing a gluten free diet. If you don't have celiac disease, you may have NCGS (Non Celiac Gluten Sensitivity) for which there is not test available yet. Celiac disease must first be ruled out. Then you would need to trial a gluten free diet for for a couple of months at least to see if symptoms improve. But again, find out what you are dealing with first and then worry about the impact on your eating habits. It could be you have neither celiac disease or NCGS. Take one thing at a time.

Gluten free eating does not have to be expensive. There are plenty of mainstream food choices that don't contain gluten. It would mean, however, that you would need to avoid anything made from wheat flour, barley or rye. The focus would be on meat, fruit, veggies and dairy. I know that's not what you want to hear but that is reality.

None of this is what I want to hear. I think also the doctor told me to start the gluten free diet now because of how far out the endoscopy will be scheduled (thanks to the holidays) it's kind of her "quick fix" to try to see if I notice any changes. There is a potential to see change in two weeks as far as I'm aware even though actual recovery from it takes 6-8 (or at least that was what was said to me). I'm not getting this endocopy for a few months so it won't hurt to try this for a week or two and see if she's right. At least not physically. Psychologically, on the other hand, it's making me go mental. 

Also, right now I can't cook. I have a serious injury on my dominant hand and it's still technically an open wound (even though it's in the second stages of healing). If I can't properly wash my hands after handling raw meat then I'm not going to get anywhere near it, especially not with what my wound looks like as of now and the fact that I can't really get the area wet and if I do I have to change the bandage and it's this whole really annoying and painful process that I'd rather just avoid by not cooking raw meat. 

I know something is upsetting my stomach but I never know what. Some days I seem to tolerate everything just fine, sometimes even for weeks. Then I go weeks or months where I'm sick all the time nad no matter what I eat makes me sick. I've already cut out dozens of things from my diet that I love but know makes me sick. I love eggs so much (but as I said I'm allergic, the allergy hit me later in life so I very well know how eggs taste and how much I like them) but I can't have them. It's been this way for over 10 years and I can't tell you how many times I still crave eggs even knowing that they could kill me. It's the same with wanting regular dairy and having way more cheese than I usually it which I do have but it's also limited. It's like the moment I'm told I can't have something I consider a comfort food anymore, the more I want it. 

When I had Pancreatitis last year for an entire month my diet could only be like rice, clear broths, apple sauce...the most bland food you could imagine. I knew I had to stick with it because if I didn't it would cause pain and potentially flare up so badly again I'd have to go back into the hospital. I was miserable the entire month. Every moment of every day was thoughts of getting a burger or a pizza or having a big steak or eating tacos, literally every food I wasn't allowed were the only foods I wanted. I would actively talk myself into not being hungry because I couldn't have anything good and then ultimately either not eat at all or eat very little. That was just for one month and that diet was annoyingly restrictive. Like this one. 

Maybe it's because I've always used food as a coping mechanism. I'm poor, I'm never not going to be poor, and I don't get to do anything. I don't get to travel. I don't get to pursue my hobbies. I don't get to really have anything outside of my video games and food. One or the other just isn't going to cut it. Maybe if my life situation was better or I had more options or something, none of this would seem so bleak but it does. All I can see is never being able to go out for a decent meal again. Never having cake or cookies again. Never having burgers and pizza again. Not the way I like them at least. It's literally sentencing me to psychological torture for the rest of my life if I end up having celiacs because I don't have anything going for me other than the comfort food brings. Which I know is not healthy but I don't have anything else and trust me, therapy just isn't cutting it and I've been doing that for years. 

Cooking makes me happy. Cooking food I like makes me even happier. Eating food from my favorite restaurants is the best. It's such a simple fix for having a bad day or being stressed out. Now I get to face the fact that I may not even have that to fall back on and it's just going to be salad and gross tasting bread for the rest of my life. Yes, I have tried a lot of gluten free stuff not all of it but my mother has celiacs so I've tried some of her stuff and let me tell you what she's buying (at least) I'd make a sandwich out of cardboard. Seems like it would be more palatable. 

[trents]

I'm not clear on whether or not you have had a blood draw to check for celiac antibodies. That normally comes before the endoscopy/biopsy. There are specific antibodies produced by celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

In the UK if the tTG-IGA numbers are high enough, they often don't even bother with the endoscopy. If you start a gluten free diet now you will sabotage the testing, whether it be the antibody or the endoscopy/biopsy. If you go back on gluten after being off of it for a significant period of time, your reaction to it will likely be more severe as you will have lost any tolerance for it you may have had.

If your mother has been confirmed to have celiac disease, there is almost a 50% chance you have it, given your symptoms.

It is typical for those who have lived with undiagnosed/unheeded celiac disease for years to develop other food sensitivities. Common among them are dairy and eggs. About 10% of celiacs react to oats (even gluten-free oats) the same way they do to gluten. I have many  food sensitivities, eggs being one of them. I have discovered I can still eat a lot of these things in limited quantities without issue but too much and too often gives me problems, usually triggering stomach discomfort and/or migraines. I know this sounds odd but I have discovered that I tolerate eggs much better if they are poached. There is science behind this as the steaming involved in poaching creates a hydrolysis effect that alters the egg protein.

It can often take two years or more for significant healing of the small bowel villi once a person is eating truly gluten free. Improvement in symptoms usually occurs within weeks, however.

Gluten has an addicting effect similar to opiates and there is often a withdrawal effect experienced by those beginning a gluten free diet that can last for a few weeks: https://justthrivehealth.com/blogs/blog/you-may-be-addicted-to-gluten

[Scott Adams]

Have you tried duck eggs? I had issues with chicken eggs but could tolerate duck eggs, which can be found at farmers markets and Asian markets.

[Liquid lunch]

Here is an affordable and tasty recipe that might help, the bifidobacterium in the kefir will help you digest any gluten that you fail to resist the temptation of and the prebiotics in the banana and stewed apple will keep them alive in there for longer, I find it provides relief from my symptoms. Just whizz it all up in a blender.

1 pint of homemade milk kefir

1 1/2 bananas

4 tablespoons of stewed apple

1 tablespoon of coconut oil

1 teaspoon of cacao

1 teaspoon of freeze dried blueberries 

1/2 a teaspoon of freeze dried strawberries 

1/2 a teaspoon of black pepper

1/4 of a teaspoon of freeze dried açai

 

[itarachiu]

@AnyBunny94

See that is part of the problem itself, you are living your life to eat instead of eating(healthy) to stay alive. After years of gluten free in my case I don't miss it anymore, maybe pizza and donuts is the only thing I miss but I learn to live my life without gluten or eating in mall which is 99% unhealthy or eating fast foods, or eating gas station foods or eating sugar as a food such as cakes or whatever. I accepted that this is why I got sick, because I played with nature, I did eat foods that our body is not designed to digest. Yes everybody around me can eat gluten and for some reasons(lucky me) I got that gene which my immune system does attack the gluten protein and made me suffer for more than a decade until I found out.

This was the bad part, the good part is I learn how to live the rest of my life, I learned how to live healthy, I had to change my lifestyle radically because there is no other choice, is not fun I know. I'm not gonna tell your that 'everything will be alright' or 'you will be fine'... but life is not fun all the time, it wasn't fun even for our ancestors 10.000 years ago, did you think that they had time to complain that oh I can't live if I can't eat that.

I hope that I wasn't mean, but in my case when I found out that if I don't eat gluten my health will came back I was so happy to find out about this. I started to eat new foods that I never eat before and I discovered that they taste almost that good as it was with gluten.

 

[trents]

7 hours ago, Liquid lunch said:

Here is an affordable and tasty recipe that might help, the bifidobacterium in the kefir will help you digest any gluten that you fail to resist the temptation of and the prebiotics in the banana and stewed apple will keep them alive in there for longer, I find it provides relief from my symptoms. Just whizz it all up in a blender.

1 pint of homemade milk kefir

1 1/2 bananas

4 tablespoons of stewed apple

1 tablespoon of coconut oil

1 teaspoon of cacao

1 teaspoon of freeze dried blueberries 

1/2 a teaspoon of freeze dried strawberries 

1/2 a teaspoon of black pepper

1/4 of a teaspoon of freeze dried açai

 

Can you sight any evidence that the bifidobacterium in the kefir will help break down gluten?

Edited December 25, 2022 by trents

[trents]

7 hours ago, itarachiu said:

@AnyBunny94

See that is part of the problem itself, you are living your life to eat instead of eating(healthy) to stay alive. After years of gluten free in my case I don't miss it anymore, maybe pizza and donuts is the only thing I miss but I learn to live my life without gluten or eating in mall which is 99% unhealthy or eating fast foods, or eating gas station foods or eating sugar as a food such as cakes or whatever. I accepted that this is why I got sick, because I played with nature, I did eat foods that our body is not designed to digest. Yes everybody around me can eat gluten and for some reasons(lucky me) I got that gene which my immune system does attack the gluten protein and made me suffer for more than a decade until I found out.

This was the bad part, the good part is I learn how to live the rest of my life, I learned how to live healthy, I had to change my lifestyle radically because there is no other choice, is not fun I know. I'm not gonna tell your that 'everything will be alright' or 'you will be fine'... but life is not fun all the time, it wasn't fun even for our ancestors 10.000 years ago, did you think that they had time to complain that oh I can't live if I can't eat that.

I hope that I wasn't mean, but in my case when I found out that if I don't eat gluten my health will came back I was so happy to find out about this. I started to eat new foods that I never eat before and I discovered that they taste almost that good as it was with gluten.

 

But this is exactly the struggle the OP is having. She (making and assumption about gender here) is saying that food is one of the few things that gives her pleasure in life. It is a difficult place to be in.

[Wheatwacked]

 

22 minutes ago, trents said:

Can you sight any evidence

I can see that. Our inflammatory Western diet or antibiotics or malnutrition kills off the benificial bifidobacteria and lactobacillus. Without enough vitamin D to modulate the autoimmune system, ie. shut it down when the job is done, the Celiac antibodies run amuck.

Digestion of Intact Gluten Proteins by Bifidobacterium Species: Reduction of Cytotoxicity and Proinflammatory Responses  Recent evidence has suggested that the lower relative abundance of bifidobacteria in the intestinal lumen may be associated with celiac disease. 

[Wheatwacked]

On 12/23/2022 at 9:23 PM, AnyBunny94 said:

I'm on day two and I already want to give up. I'm crying all the time

That is possibly due to low vitamin D. It worked wonders for me.  "There has been research examining the relationship of vitamin D to seasonal affective disorder (SAD), schizophrenia, and depression." Vitamin D and Depression: Where is all the Sunshine?

[Wheatwacked]

On 12/23/2022 at 9:23 PM, AnyBunny94 said:

Gluten free is even more restictive than that and I can't even make it to day three without losing my mind. 

Many people find gluten to be addictive and go through withdrawal (jonesing) that can be rough. Consider thinking about what makes those foods you love so comforting. Much I believe is successful marketing strategies, some happy memories. For the transistion I made 8 years ago I ate anything, fritos, potato chips, watermelon. Your goal at first like a recovering alcoholic is to not take that first bite because you will finish it off. With abstenance and vitamin replenishment you will begin to feel better. Then you can work on a new cuisine you will learn to love. Large amounts of vitamin D helped me with mood  and 5 mg of Lithium Orotate helped ease the need for immediate gratification.

[yuluyouyue]

I am sorry you feel so miserable. But I guarantee you that you won't feel like this forever. You said you love to cook (when not injured), so this could be a chance to try and learn how to make tasty food that you can eat. I also crave pizza, but I found schär pizza base to be really good. I put whichever topping I have and my pizza is ready in 10 minutes. Do you have something like that near you?  I hear you when you say you cant have dairy eggs and coffee though. I cant imagine not being able to have this on top of gluten. I hope you will be able to introduce this back to your diet once you heal. It will get better!

[Liquid lunch]

Not sure how to edit posts yet, I should have added to my smoothie recipe suggestion that although it does contain dairy you may be able to tolerate kefir even if you struggle with milk, the probiotics seem to consume anything problematic in there, possibly the lactose.

I found when I was at my worst it was the only thing that offered me relief, might be worth a try.

best wishes for a smoothie recovery :).

[Liquid lunch]

22 hours ago, Wheatwacked said:

 

I can see that. Our inflammatory Western diet or antibiotics or malnutrition kills off the benificial bifidobacteria and lactobacillus. Without enough vitamin D to modulate the autoimmune system, ie. shut it down when the job is done, the Celiac antibodies run amuck.

Digestion of Intact Gluten Proteins by Bifidobacterium Species: Reduction of Cytotoxicity and Proinflammatory Responses  Recent evidence has suggested that the lower relative abundance of bifidobacteria in the intestinal lumen may be associated with celiac disease. 

Thanks for the vitamin d recommendation, I will try adding this to my diet.

[knitty kitty]

@AnyBunny94,

Hello.  Yes, it is difficult to make that mental adjustment to eating gluten free, as @itarachiu said.  

Keep in mind that gluten containing products are enriched with vitamins and minerals.  Our bodies can crave foods for those vitamins and minerals.  Most gluten free facsimile foods are not enriched with vitamins and minerals.  

I found that taking a B Complex vitamin, Vitamins D and C, and magnesium has helped me fulfill my body's requirements for these essential vitamins and the cravings for gluten containing products has disappeared.  

You may find it beneficial to talk to a nutritionist so you can learn how to eat a nutrient dense diet.  

Here's an interesting article....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/