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I'm So Bitter And Sick Of It

zus888

By zus888
in Coping with Celiac Disease

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Goof Rookie
Goof
Posted

I think you and I have been gluten-free for the same amount of time. I just hit 6 months last week. The stages of grief are absolutely true! When I first read that, I laughed a bit, and didn't take that part of going gluten-free seriously. But I went through all 5 stages of grief, including the anger. I have also made some mistakes along the way, been glutened, and been angry about being glutened. BUT you will get through this, I can assure you. Let yourself go through the grief stages. It's ok!!!! You're going through a massive lifestyle change, and it's natural for it not to be easy. Just keep hanging in there!

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Sarah Alli Apprentice
Sarah Alli
Posted

I don't really know why someone would miss gluten. I bake and everything I've made tastes as good or better (I love the almondy flavor Pamela's has) as gluteny things. I've made banana bread, oatmeal muffins, coconut cupcakes, cheesecake, chocolate chip cookies, snickerdoodles, on and on. All gluten free, and nobody can tell the difference. I have recipes for all these if you're interested.

I don't especially care for bread, so you've got me there. I eat Udi's occasionally but if I lived alone I probably wouldn't bother- it's mostly for my pb&j-loving sweetie.

In fact (and maybe this isn't what you want to hear) I love being gluten free. I do. I had to make changes in my life, totally, but most of them were changes I wanted to make anyway but put off. More fruits and vegetables in my diet. No more icky over-processed, bleached, god-only-knows-what-else carbs. Nothing fried. More organics, making stuff from scratch instead of buying things full of preservatives and carcinogens. Much less eating out (we save so much money). More than all of those things, really, is that I appreciate what being gluten free has taught me: namely, how to cook and really love food. I've morphed into a foodie- what once was a picky bland eater now dwells longer each time in the spice aisle and grows her own herbs. I've churned ice cream and made peanut butter. I spend lazy afternoons simmering chicken stock and I dream of canning home-grown delights and maybe someday owning my own bakery. I have the energy, at long last, to do the things I want to do- being gluten free did all of this for me.

love2travel Mentor
love2travel
Posted

I don't really know why someone would miss gluten.

I am a foodie and as such miss gluten like crazy! When you are as passionate about food as I am, you naturally miss it. The best food (and top quality ingredients) is a gigantic part of my life. I have eaten in some of the top restaurants on the planet so when you have had the ultimate you never forget it. You are right - it is very simple to do a lot of great gluten-free baking that can be superior to things containing gluten but that applies to quick breads, cookies, cakes, brownies, muffins, cupcakes, etc. and not yeast breads, phyllo and puff pastry, bagels, English muffins, choux pastry, and so on. I miss the aromas, texture and structure in addition to flavour. The act of kneading dough for bread or buns is (was) an integral part of the experience to me. Now those are the things I miss because they just cannot be replicated whereas the other stuff can. Yes, I admit I am a bit serious about food and am a food snob. There - I said it! :P

zus888 Contributor
zus888
Posted
  • Author

Man, I miss bread. I miss bread something fierce. And, that's the rub. If I had a day to binge, I would first go to Golden Corral and get salad and their dinner rolls. Mostly, the dinner rolls. That would be my meal: soft, buttery dinner rolls that practically melt in your mouth. Really, above all else, THAT is what I think about. BREAD. Yeasty yummy bread. Warm and soft, and chewy. Then, I'd probably have a pizza with a thick crust. Not sure what I'd have for dessert, but I wouldn't waste my time on something that could be decently replicated. The other thing I miss (but not yet) are my holiday cookies. I'm pretty sure that I'm not going to be able to replicate one of them, which makes me terribly sad.

sa1937 Community Regular
sa1937
Posted

Man, I miss bread. I miss bread something fierce. And, that's the rub. If I had a day to binge, I would first go to Golden Corral and get salad and their dinner rolls. Mostly, the dinner rolls. That would be my meal: soft, buttery dinner rolls that practically melt in your mouth. Really, above all else, THAT is what I think about. BREAD. Yeasty yummy bread. Warm and soft, and chewy. Then, I'd probably have a pizza with a thick crust. Not sure what I'd have for dessert, but I wouldn't waste my time on something that could be decently replicated. The other thing I miss (but not yet) are my holiday cookies. I'm pretty sure that I'm not going to be able to replicate one of them, which makes me terribly sad.

I hear ya, Suzanna. I think a lot of us miss our old gluteny bread...and that seems to be difficult to replicate, try as we may. I'm not sure I really recall exactly what it tastes like as it's been a long while. Have you tried making gluten-free pizza yet...that is one thing I've gotten pretty good at. The cookies will probably be easier than bread and come the holiday season, I have a feeling you'll find a lot of recipes here on the forum.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I hear ya, Suzanna. I think a lot of us miss our old gluteny bread...and that seems to be difficult to replicate, try as we may. I'm not sure I really recall exactly what it tastes like as it's been a long while. Have you tried making gluten-free pizza yet...that is one thing I've gotten pretty good at. The cookies will probably be easier than bread and come the holiday season, I have a feeling you'll find a lot of recipes here on the forum.

I agree with Sylvia! Don't give up on making gluten-free things yet. Pizza is really easy if you can find King Arthur's multi-purpose gluten-free flour and use their recipe on their blog. On the box of flour they have a recipe for popovers that is great! The popovers taste like a small soft dinner roll to me. For your holiday cookies I suggest you post the original recipe in the recipe section here and ask for help converting it to gluten-free. There are some amazing gluten-free bakers here. Just look at what Simona has recently been able to make: (If you search for her posts specifically you will see a bunch of other faboulous treats such as dumplings and cakes, etc.)

Kim69 Apprentice
Kim69
Posted

You are very lucky to have a gluten-free household. My family refuses.

My saviours are chocolate and an antidepressant (I was on it before I became Coeliac).

I have serious issues with food and see a therapist who has helped me throughout. I also have fructose malabsorption which really limits my food. I miss apples and pears.

So my advice is to see a therapist and consider an antidepressant. The ad helped me feel normal.

Hugs to you!!

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zus888 Contributor
zus888
Posted
  • Author

I have been waffling about seeing a therapist and maybe even the antidepressants. I hate the idea of adding more drugs to what I already take (17 total daily). Plus, depression is one of the big indicators for me that something is amiss (either thyroid or getting glutened), so masking it may be masking a valid medical issue.

I would qualify myself as depressed right now, though it's not really affecting my every day living - just tainting my general world-view. I meant to call the doc today to have my thyroid tested again - I can't seem to get is stabilized.

I do have a pizza crust recipe that I got from food.com and it's pretty good. I'd rank it up there with an ok frozen pizza. But I just can't get the dinner rolls out of my head. They haunt me.

Even today, I was talking to someone about the diet, and I really had not one good thing to say about it. I did tell her that some people will say that it's not that bad, but that I hadn't found that to be true at all. I won't lie: I think it sucks. I would love to get out of that mindset because it does nothing but sabotage my whole perspective.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have been waffling about seeing a therapist and maybe even the antidepressants. I hate the idea of adding more drugs to what I already take (17 total daily). Plus, depression is one of the big indicators for me that something is amiss (either thyroid or getting glutened), so masking it may be masking a valid medical issue.

I would qualify myself as depressed right now, though it's not really affecting my every day living - just tainting my general world-view. I meant to call the doc today to have my thyroid tested again - I can't seem to get is stabilized.

I do have a pizza crust recipe that I got from food.com and it's pretty good. I'd rank it up there with an ok frozen pizza. But I just can't get the dinner rolls out of my head. They haunt me.

Even today, I was talking to someone about the diet, and I really had not one good thing to say about it. I did tell her that some people will say that it's not that bad, but that I hadn't found that to be true at all. I won't lie: I think it sucks. I would love to get out of that mindset because it does nothing but sabotage my whole perspective.

17 different scripts a day! Yea I would be reluctant to add another into the mix also. Do have your doctor review all of the meds and make sure that your mood issues aren't being caused by a reaction to the mixture. Many drugs can have side effects that can cause irritability and other problems.

zus888 Contributor
zus888
Posted
  • Author

Oh, No! Not 17 scripts, 17 pills. Actually it LOOKS worse than it is. I have 4 scripts: Rx fish oil (2 pills, 2x daily - supposed to provide anti-inflammatory effects), something to keep crohns in check (3 pills 2x daily), and another for my liver disease (2 pills 2x daily - although there are no studies to prove that it actually provides any true benefits for the liver disease), thyroid med (1x daily), OTC allergy, and OTC vitamins. So, it's a lot of pills to keep track of even though there's only 4 scripts.

I have a lot of issues going on, just like many of you. Unfortunately, none will be resolved by the gluten-free diet.

ravenwoodglass Mentor
ravenwoodglass
Posted

Oh, No! Not 17 scripts, 17 pills. Actually it LOOKS worse than it is. I have 4 scripts: Rx fish oil (2 pills, 2x daily - supposed to provide anti-inflammatory effects), something to keep crohns in check (3 pills 2x daily), and another for my liver disease (2 pills 2x daily - although there are no studies to prove that it actually provides any true benefits for the liver disease), thyroid med (1x daily), OTC allergy, and OTC vitamins. So, it's a lot of pills to keep track of even though there's only 4 scripts.

I have a lot of issues going on, just like many of you. Unfortunately, none will be resolved by the gluten-free diet.

Whew, glad to hear that. Do be sure to have them do rechecks on your liver panels frequently. I don't know what liver issues you have but many of us to have liver panels that are off when we are diagnosed that resolve with no meds after we have been gluten free for a while. I had a problem finding fish oil tabs that were soy free. I don't know if you have issues with soy but if you do make sure they don't have soy in them. I finally found a cod liver oil cap that was just cod liver oil. I hope you are feeling better soon. Your allergies may also calm down. I showed allergies to 98 out of the 99 things I was tested for prediagnosis and felt like I needed to live in a bubble. Within a few months only 4 remained and they are not really severe at this point. Hopefully yours will resolve also. It can be amazing how much celiac impacts our systems and how much can resolve that doesn't seem to be related after we heal.

zus888 Contributor
zus888
Posted
  • Author

That's actually quite interesting. It's ragweed season up here and normally (even with shots) I'm completely miserable, but I'm not having any more of a problem than a slightly runny nose. I don't know if the pollen isn't that bad or what. I thought it had more to do with the shots and my allergy meds, but maybe I'm wrong. I have tried going off the allergy meds, and have had no luck at all with it. But, in a normal year, I'm miserable with the shots AND the meds - that's how bad I reacted. So, maybe gluten-free IS actually making a noticeable effect?

Oh, and I have been diagnosed with Primary Sclerosing Cholangitis. A study showed no difference between those who went gluten-free and those who didn't. Apparently it has no effect on the progression of the disease. I try not to think about it, though.

Going to Outback tonight for my birthday dinner and then having an almond torte from Gluuteny. Man, I really hope it's good. If not, I'll just have to make my own cake for myself tomorrow. But today, I'm NOT cooking!

Zaphryn Newbie
Zaphryn
Posted

I thought at first relief when I was told what was wrong, and the diet didn't bother me much other than it's so damn costly and there are close to no products in my country.. but at least you can make alternatives and some are better than the originals.

But gotta say, it depresses me so when I go downtown and I can't go to a restaurant with my boyfriend and he doesn't wanna be limited by me. I said before I went on the diet that I was worried how it'd bother him cause in a way it'd restrict him too, but he said it'd be no problem. It's just not how I felt lately. And when people make homebaked cakes at work and I gotta say no.. man, it kills you socially. Who knew food brought people together as much as it does. This diet basically restricts you in all sorts of food and makes you hypersensitive towards other food too .. No wonder it makes a lot of us bitter.

mushroom Proficient
mushroom
Posted

Yeah, you have to develop a new outer skin that both makes you impervious to the dubious delights of gluten, and at the same time allows you to be super nice to people who offer it to you, and not bore them to death with why you can't eat it :lol: You also have to learn that it is the social part that counts, not the food, and focus on that, otherwise you run the risk of being ostracized. There's nothing that will turn you into a good cook more than a diagnosis of gluten intolerance. Blow them away with your gluten free goodies. Sorry I can't help with the boyfriend part. Either he gets it and will be supportive, or he doesn't and won't. :(

By the way, welcome to the forum :)

Marilyn R Community Regular
Marilyn R
Posted

That's actually quite interesting. It's ragweed season up here and normally (even with shots) I'm completely miserable, but I'm not having any more of a problem than a slightly runny nose. I don't know if the pollen isn't that bad or what. I thought it had more to do with the shots and my allergy meds, but maybe I'm wrong. I have tried going off the allergy meds, and have had no luck at all with it. But, in a normal year, I'm miserable with the shots AND the meds - that's how bad I reacted. So, maybe gluten-free IS actually making a noticeable effect?

Oh, and I have been diagnosed with Primary Sclerosing Cholangitis. A study showed no difference between those who went gluten-free and those who didn't. Apparently it has no effect on the progression of the disease. I try not to think about it, though.

Going to Outback tonight for my birthday dinner and then having an almond torte from Gluuteny. Man, I really hope it's good. If not, I'll just have to make my own cake for myself tomorrow. But today, I'm NOT cooking!

I used to get a serious cold or bronchitis twice a year. Now I haven't had a cold in almost two years. It used to be a big problem, because all of the OTC cold remedies make me break out in hives. So I just sufferred through the 1-2 weeks I had the cold with homemade remedies. (Chicken soup, Vick's Vaporub.)

You're going to get some weird blood tests if you have secondary food intolerances going on. I've been dx with Mixed Connective Tissue Disease and a weird lung disease. I insisted that they repeat my blood tests and they came back normal. My guess is that something else is bugging you, like soy. Soy's in everything, like mayo and all processed foods. I'm just guessing though... could be completely wrong.

The only reason I mention this is that I noticed from previous posts that we've shared quite a few symptoms.

Hope you have a really happy birthday, and wish you the very best. :D

Zaphryn Newbie
Zaphryn
Posted

Yeah, you have to develop a new outer skin that both makes you impervious to the dubious delights of gluten, and at the same time allows you to be super nice to people who offer it to you, and not bore them to death with why you can't eat it :lol: You also have to learn that it is the social part that counts, not the food, and focus on that, otherwise you run the risk of being ostracized. There's nothing that will turn you into a good cook more than a diagnosis of gluten intolerance. Blow them away with your gluten free goodies. Sorry I can't help with the boyfriend part. Either he gets it and will be supportive, or he doesn't and won't. :(

By the way, welcome to the forum :)

Thank you =D! And good point with the social part which is what counts instead of the food. And I think you're right about becoming a good cook cause you learn to make everything from the bottom.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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