Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Fed-Up, Frustrated, And Ready To Quit
0

15 posts in this topic

I seriously can't take this anymore. I can't eat anymore. NOTHING agrees with me. I went gluten-free over 2 weeks ago, I have avoided almost every bit of soy that I could unless ingesting some by accident. No meat. No dairy. No grains except a few bites quinoa when I was cooking for someone else last night. No legumes. No nuts. Limited fats other than a small amount of pumpkin seeds and small amount of avocado. Juice fasting for the first half of the day to give my system a rest. Taking HCL tablets (started yesterday) with meals, drinking apple cider vinegar prior to meals, taking strong digestive enzymes prior to meals (and expensive at that, even though they don't do much for me) and also started probiotics 2 weeks ago- starting with a maintenance dose, climbing to therapeutic, then lowering to somewhere between the two depending on the day. I don't eat fruit after meals, I try to eat fairly low fat and ONLY raw, good fat with late lunch or dinner. I have decreased my fruit intake and just been drinking juice (grapefruit or apple) instead. I can't handle digesting kimchi or kombucha without major gas pains. I can't handle eating anything without major tightness, pain, gurgling, bloating, distention, etc causing me to lie in bed each night rolling from side to side. Diarrhea went away after starting probiotics (it seems to be falling closer to the opposite now) but the pain, excessive gas, bloating, and foul odor continue. I don't know what to do anymore. I'm out of ideas. Until then I will do my best to just not eat period for the longest amount of time I can handle it. Living on juice is going to have to keep me standing on my two feet for now. I'm so sick of the consequences of "nourishing" myself off of "rabbit food", as most people call it. High-raw, (typically grain-free) vegan diet, over 50 months of struggling to do this all day every day only hoping to finally feel good for once, and I think I'm just getting worse. I'm so frustrated, this will never get better. I dont even know if I can say I'm losing hope now because lately I never start a new healing regimen with much excitement. I think Ive about lost almost all the hope I once had.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Two weeks is a flicker in most peoples recovery time. You need to be very patient.

Are you vegan or vegetarian by choice?

I use to eat very little meat just because I didn't want/need to but now it is an absolute mainstay of my diet.

I found dairy and juices to be a big problem in my first few weeks. Dairy made me want to vomit and juice (any kind) made me feel like my gut was being shredded.

I started with basic soups- pumpkin/potatoandleek. Then started adding to that. One ingredient at a time. After about a fortnight I added rice and other veg. Then meat (very, very slow/long cooked). Eventually my system tolerated stews/casseroles/risotto and now I'm very happy to eat a big steak and loads of veg (raw or cooked). But it took a long time.

0

Share this post


Link to post
Share on other sites

Have you been diagnosed or are you trying gluten-free to see if it helps? If you haven't been tested yet you may want to go get tested after adding gluten back in for a little bit. If you go gluten free without testing and later decide you need a diagnosis you will have to do a lengthy challenge and even on a full gluten diet false negatives are not uncommon.

It is not a good idea to start off with a raw, or mostly raw diet at first. Raw veggies and fruits can be hard for us to digest. Go with soups and stews as those will be easier on your system.

A couple weeks is very early in on the diet and it does take some time to heal. Read as much as you can here as there are many things you need to do to eat safely other than just you choice of foods. I do hope your feeling better soon.

0

Share this post


Link to post
Share on other sites

I'm not vegan by choice, I went vegan when I went raw in April of 09. The first 3 months were almost wonderful but little by little my gut decided it wasnt going to digest fats or vegetables anymore. I tried soups, even homemade vegetable soups, no grains- just vegetables (no potato or corn- can't digest em) and broth. Even those make my stomach bloated, distended, and gassy so unfortunately I cannot go back to just "simple soups". I STRONGLY CRAVE protein foods but they are all foods I can't eat (peanut butter, eggs, edamame soy beans, grains, nuts and seeds, etc). All of them 'cause the worst discomfort ever and excessive gas or gas pains. Unfortunately sometimes the craving is SO strong I can't resist and I'll eat them for a week until I'm sicker than a dog. I have to assume my body doesn't have enough protein. I can't eat most grains, including rice which causes my arthritis to flare and joints to painfully stiffen within hours of eating it. Other grains are just impossible for me to digest. I tried quinoa, another high protein food, and that causes gas pains too.

Fruit is the only thing I can eat (alone, always alone and not within 8-10 hours of eating non-fruit meal unless I want to deal with some discomfort which.. usually happens anyway). Salads can be difficult but I keep them simple- spinach, kale, cucumber and sprinkle of pumpkin seeds mainly, and no dressing just lemon juice and gluten-free/SF soy sauce alternative. Still will feel sick. Smoothies I can handle but are hard to live off of 100% (and not healthy to do long term unless I'm eating a wide variety of it, blending a pound of greens in, and ingesting 3,000 calories worth of fruit daily, which I'm not). I used to be able to digest raw veggies much better (provided they weren't broccoli, cabbage, etc) but lately, I can't digest anything, even if it's been steamed first. Even if i'm taking every sort of digestive aid along with my meal.

I have been tested for celiac which came back negative. I noticed a big difference in my crohn's symptoms, and energy level when I cut it out. Not so much of a difference in my digestion though. My digestion has gotten increasingly worse over the past worse, and unbearable (with the gas and pains) over the past 3 months. I don't know what to do anymore.

I'm living on grapefruit juice all day until thanksgiving dinner, where I will be surrounded by good food and only "enjoying" a small garden salad without dressing.

0

Share this post


Link to post
Share on other sites

There are conditions other than celiac that can cause you to stop being able to digest food. You mention you have Chrons, are you talking to your doctor about this? If you are unable to digest virtually any food you could have something really serious going on so I hope you are keeping your doctor on top of things.

0

Share this post


Link to post
Share on other sites




The first weeks and months of gluten-free are the toughest, in my never to be humble opinion! I was in tears at the grocery store...panicked when I had to go to someone's home or meet at a restaurant...etc., etc., etc.

Hang in there -- your health is worth the struggle.

Happy Thanksgiving to you and yours!

PS most items for thanksgiving meals are naturally gluten free...just need to adjust gravy, stuffing and rolls :)

0

Share this post


Link to post
Share on other sites

There are conditions other than celiac that can cause you to stop being able to digest food. You mention you have Chrons, are you talking to your doctor about this? If you are unable to digest virtually any food you could have something really serious going on so I hope you are keeping your doctor on top of things.

I was thinking this as well. It sounds like there is something else going on other than WHAT you are eating. If your GI system is diseased (ie. Crohns, colitis, etc.) then it's not likely you can fix it with a special diet.

It sounds like you are not eating nearly enough nutrients/protein to sustain a healthy body. Please follow up with your doc about your issues and rule out everything else (if you haven't already) before you attribute all of your symptoms to food intolerances.

Hope you feel better soon!

0

Share this post


Link to post
Share on other sites

This is just a shot in the dark but I'm wondering if you restricted your diet so much that you developed food allergies to most of the stuff you eat. I recently had a huge skin flair up and when they did a food allergy test I tested positive for almost everything I eat. As a result I switched to having things I don't normally eat. For example I would eat Applegate Farms chicken sausage and a plain baked potato for breakfast along with digestive enzymes, probiotics, DGL and L-glutamine (these last two to help heal my gut). Surprisingly my stomach did not bloat and I didn't have stomach pain. Then for lunch I had fish and cauliflower french fries (these are cauliflower and potato in a fry shape that you bake). Dinner was then Applegate Farms bacon and a plain baked potato. I had never had so much animal fat and it surprised the heck out of me but my stomach tolerated it so much better than my healthier diet of raw veggies, lean meat, dairy, non-gluten grains and fruit.

Just thought I'd throw it out there. I know I can't eat this way for a long period but after my stomach started to feel better for a few days I added things back in like cooked veggies, rice, soy and an occasional piece of fruit that were not shown to be allergies in my allergy panel.

Why this weird diet helped me I have no idea. The only reason I chose selections with animal fat in them is that my mom who has been having trouble with her stomach said she had tried every weird diet under the sun and got some relief when she upped her fat intake. Since I was already so miserable I gave it a shot and it worked for me. Or it could have been that it was just plain and simple enough that it didn't bother my stomach. My vet always prescribed boiled beef and rice to my dogs when they had nausea or upset stomachs. Maybe this was just the human version of that. I couldn't do rice since it showed up on my allergy panel but potato was one that I didn't show an allergy to. Also I couldn't do beef since that also showed up on my allergy panel. Fish, chicken and pork were all shown to be OK for me.

I agree with the above poster though. There is something underlying the whole thing that you need to work with a Dr. on. My Dr. is running a bunch of tests on me to see why I have all these new food intolerances.

0

Share this post


Link to post
Share on other sites

I'm not vegan by choice, I went vegan when I went raw in April of 09. The first 3 months were almost wonderful but little by little my gut decided it wasnt going to digest fats or vegetables anymore. I tried soups, even homemade vegetable soups, no grains- just vegetables (no potato or corn- can't digest em) and broth. Even those make my stomach bloated, distended, and gassy so unfortunately I cannot go back to just "simple soups". I STRONGLY CRAVE protein foods but they are all foods I can't eat (peanut butter, eggs, edamame soy beans, grains, nuts and seeds, etc). All of them 'cause the worst discomfort ever and excessive gas or gas pains. Unfortunately sometimes the craving is SO strong I can't resist and I'll eat them for a week until I'm sicker than a dog. I have to assume my body doesn't have enough protein. I can't eat most grains, including rice which causes my arthritis to flare and joints to painfully stiffen within hours of eating it. Other grains are just impossible for me to digest. I tried quinoa, another high protein food, and that causes gas pains too.

Fruit is the only thing I can eat (alone, always alone and not within 8-10 hours of eating non-fruit meal unless I want to deal with some discomfort which.. usually happens anyway). Salads can be difficult but I keep them simple- spinach, kale, cucumber and sprinkle of pumpkin seeds mainly, and no dressing just lemon juice and gluten-free/SF soy sauce alternative. Still will feel sick. Smoothies I can handle but are hard to live off of 100% (and not healthy to do long term unless I'm eating a wide variety of it, blending a pound of greens in, and ingesting 3,000 calories worth of fruit daily, which I'm not). I used to be able to digest raw veggies much better (provided they weren't broccoli, cabbage, etc) but lately, I can't digest anything, even if it's been steamed first. Even if i'm taking every sort of digestive aid along with my meal.

I have been tested for celiac which came back negative. I noticed a big difference in my crohn's symptoms, and energy level when I cut it out. Not so much of a difference in my digestion though. My digestion has gotten increasingly worse over the past worse, and unbearable (with the gas and pains) over the past 3 months. I don't know what to do anymore.

I'm living on grapefruit juice all day until thanksgiving dinner, where I will be surrounded by good food and only "enjoying" a small garden salad without dressing.

Ok, there are a several things that jump out at me. 1) You crave protein. So if your body is telling you it needs protein, why can't you eat it in the form of meat if you aren't vegan by choice? 2) I'm a believer that juicing is horrible for you. If you research the effects on insulin production from the sugar content in juicing, it is kinda scary. Also, your body is not designed to digest juices. It is designed to extract nutrients over time from whole foods. If you have a bacterial imbalance this may be exacerbating the problem. Have you tried blending entire fruits and veggies (whole) into a smoothie style drink? Can you tolerate organic unsweetened coconut milk? 3) I would strongly suggest you take a look at the GAPS (similar to the SCD but somewhat more restrictive) diet. It is specifically focused on rebuilding gut flora, and it has helped me tremendously. I loaned by boss the GAPS diet for dummies book I got, and they wound up putting their entire family on it for six months. Made a world of difference for his wife and one of their kids.

Here is a suggested smoothie that is a regular breakfast for us: 1/2 greenish banana (not overripe or fully ripe), organic coconut milk, 1 tbsp organic unsulphured molasses, as much spinich and kale as I can stuff into the blender, a handful of blueberries, and a tablespoon or so of lemon fish oil. You have to have the oils in order to digest the fat soluble vitamins in the vegetables. If you don't you might as well not even eat them. I'll also often put in a raw duck egg (my wife can't eat chicken eggs).

Sometimes I throw in 1/2 a Fuji apple (anything but a Delicious). I had tried juicing at first but I kept having gas and stomach aches, and I'd almost always be hungry in a couple hours and have an energy crash mid-morning.

* Edited to put in the 1/2 sentence I left out that made my first question read totally different. :)

Edited by Korwyn
0

Share this post


Link to post
Share on other sites

I just glanced through the posts but one thing that struck me was that you are off dairy, but you are taking probiotics.

My son takes probiotic pills they are gluten free but they are made with milk. Be sure to check your label.

Also have you tried taking the dairy aid tablets? My daughter gets sick after eating things from dairy, but is fine when taking the tablet. Her lactose intolerance test was "inconclusive".

However, if it helps that will give you a little more information to work with.

0

Share this post


Link to post
Share on other sites

I agree that GAPS might help, and that you really need to look into other possible issues with your digestion besides just celiac.

On the blog linked from my profile I have a summary of how to do the first 6 stages as well as other posts about how to get set up for it.

I really believe that raw food is much harder on the digestive system for most people. When my digestion is all out of whack I go back to non-starchy, non-fibrous veggies cooked thoroughly in homemade stock and that helps a lot. I used to hate smushy foods but I've adjusted because it really does make me feel better. I also just started using Gestazyme digestive enzymes from American Health and have noticed a big improvement. I think protein digestion has been hard for me.

I also wonder about the sources of the foods you are eating. Are you sure they are safely sourced, organic, pasture fed, free of cross contamination, etc?

0

Share this post


Link to post
Share on other sites

I apologize for not getting back to you all right away, I do appreciate all your responses and help.

I do believe I have an underlying issue, I just can't get to the bottom of it. Whatever it is has worsened over the past several months.

I do have a primary doctor, not a GI specialist currently, because I don't really trust them, all they want to do is put me on steroids and my primary only does tests or treatments if I specifically ask. Pretty much I play doctor and prescribe, she authorizes it. She has celiac as well, so I know she's more understanding on some of the symptoms.

@michelle- i do believe it is entirely possible I have developed these food intolerances after going raw. When originally going raw I could eat any fruit or veggie and any amount of fat and felt great. I used to make giant green smoothies and giant salads and snack and nuts and dried fruit and dates and all sorts of good stuff. Felt fine, to begin with. A couple years later and it's a whole new story. I assumed maybe my body had cleaned itself out and now is more sensitive to it's "true intolerances" that it can now recognize what it wants and doesn't. And apparently it wants a fruitarian diet and I pay consequence for anything that's not following that plan.

@ michelle and korwyn- I cannot eat animal fat anymore. I did used to have a hard time digesting it even before raw, even just fish, but now the pain and bloating (6 months pregnant) i get when eating meat is too much for me. Bloating and gas, unformed stools, it's unpleasant. I would love to be able to eat even salmon sashimi again, or baked tilapia, something light.. but it's too much trouble for my gut. I've tried taking enzymes with it any everything.

The GAPS diet would be too hard for me, I have intolerance to eggs, can't eat meat, limited to what vegetables I can eat (whether they're raw, steamed, boiled to mush), cannot for some reason digest even brothy vegetable soups, nightshades cause gas/bloating, have a hard time digesting more than 8g of fat in a sitting (half an avo causes horrible feeling of abdominal fullness, can't eat legumes, have trouble digesting starches/potatoes, can't digest most nuts so I stick to seeds only. I have tried fermented foods with some success but limited. Kimchi causes intestinal distress for the next 24 hours following eating it. Coconut milk kefir I can do. Raw, probiotic pickles I can do. My probiotic supplement is okay for me- it's Garden of Life RAW probiotic supplement with included enzymes.

For the past week I have been eating very lightly. Drinking grapefruit juice and apple juice during the day to give my gut a rest (I realize it's high sugar but I have always felt best when juicing both fruits and vegetables, and I must do what works for me at this time). I have been eating a lot of organic kale salads, whether homemade or picked up at the whole foods or co-op. I am 99% sure I haven't had any cross contamination with gluten, possibly some mistaken soy but not much. I do know I have a soy intolerance. I have been trying to keep things low in fat which dramatically improves my digestion. My daily staples (for the past week or two) have been

grapefruit juice

apple juice

bananas

honey or organic maple syrup (small amounts, more like every 3 days)

sunflower seed butter (small amounts)

kale

collard greens

spinach/mixed greens

organic wakame seaweed

braggs ACV

coconut aminos (gluten and soy free, soy sauce alternative)

organic pumpkin seeds

black olives

cucumber

green peas, steamed

occasional half avocado

half to one cup of black coffee in the morning

coconut milk

water

keeping it low sugar has helped with the gas and bloating. probiotics are helping me some too, i've been taking for somewhere between 2-3 weeks. started HCL capsules too, suspecting maybe a problem with low stomach acid levels??

0

Share this post


Link to post
Share on other sites

Sounds like gall bladder problems to me. People with gallbladder problems often have trouble digesting fats. And people with celiac seem to have gallbladder problems sometimes. Might be something to check into.

0

Share this post


Link to post
Share on other sites

Perhaps not eating any fats for a period of time has effected the gall bladder? No fat in the diet seems entirely unhealthy to me.

I'm unconvinced about the fruitiain diet. You only have to look at a picture of Douglas Graham to see that eating a diet reliant on raw fruit cannot be good. Sounds to me like your body is rejecting all this so called healthy food you must be spinning from all the sugar. I think another look at gaps or SCD may be in order.

0

Share this post


Link to post
Share on other sites

I actually thought it could be gall bladder related first researching my symptoms (or possible HCL acid level being low?). Should I ask about getting a HIDA scan? Or how else would they test for abnormalities?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,675
    • Total Posts
      921,694
  • Topics

  • Posts

    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • Celiac disease sufferers or those who embrace a life without gluten can check out Canada's Gluten-Free Market when it makes stops in London and ... View the full article
    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
    • For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,670
    • Most Online
      3,093

    Newest Member
    jelefr
    Joined