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Optimistic...


Scheherazade

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Scheherazade Newbie

After reading through some of the posts on this website, I'm actually feeling pretty optimistic about going gluten-free. And apprehensive, of course. But it sounds like so many of you have found the experience life-changing that you've encouraged me to try.

I've been seeing a naturopath about general health issues, mostly fatigue and depression, and I mentioned I thought I might have celiac (though I was tested by a doubtful GP at a walk-in clinic and came up negative to whatever test she reluctantly administered). My naturopath has been asking if I want to try a gluten elimination diet, but I was in a pretty depressed period and was too afraid to give up pizza and sandwiches - sadly these are huge dietary staples for me, especially when I'm stressed and don't cook for myself.

Even though I've been eating better (still lots of wheat, but no french fries and a lot less sugar) since I started seeing the naturopath, and I've been taking supplements and homeopathic potions, I still feel exhausted and swing into depression. I was thinking about asking to try the elimination diet, but wasn't sure I could actually bring myself to do it. But coming here and reading how being gluten-free has helped so many of you, I realize I have to give it a shot. Either it will help me or it won't (and then I'll dive back into the bread basket). Either way, it sounds like I'll be happier at the end of it. ;)


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lonewolf Collaborator

Welcome! You have nothing to lose by trying the gluten-free diet. Hopefully it will help you. And hopefully we can help you out too. The people on the board are great and many are really knowledgable.

I love your screen name - are you a good story-teller?

Lisa Mentor

After reading your post, I would like t

No, welcome to this board and I hope the we can afford you some anwsers to you questions. Celiac Disease is not something that we deal lightly. This is a disease that many, if not all of us have hurddles that we deal with on a daily basis and with issues that many arise in the future do to the effect rendered upon us by all different avenues.

If you would like to try the gluten free diet and with the hopes of feeling better, I would stongly suggest that you do do. Please let us know of your results. Perhaps that may be the result of your fatigue.

If your truely feel that you have Celiac or a gluten intollerance, I would STRONGLY suggest that you get tested. If you would like to go gluten free,let us know

It is very complicated and not a trendy diet for most of us here. It is a live saver.

I hope you feel better soon.

oceangirl Collaborator
After reading your post, I would like t

No, welcome to this board and I hope the we can afford you some anwsers to you questions. Celiac Disease is not something that we deal lightly. This is a disease that many, if not all of us have hurddles that we deal with on a daily basis and with issues that many arise in the future do to the effect rendered upon us by all different avenues.

If you would like to try the gluten free diet and with the hopes of feeling better, I would stongly suggest that you do do. Please let us know of your results. Perhaps that may be the result of your fatigue.

If your truely feel that you have Celiac or a gluten intollerance, I would STRONGLY suggest that you get tested. If you would like to go gluten free,let us know

It is very complicated and not a trendy diet for most of us here. It is a live saver.

I hope you feel better soon.

Scheherezade,

Brilliant name. Welcome. I would definitely continue to keep you alive and going gluten-free might help you as well keeping those stories coming! I belong to a Playback Theatre Company- Portland, Me. Do you know Playback? Been around for 30 years or so, Internationally, companies go into all sorts of different venues, hear people's stories- stories of loss, triumph, the mundane- life stories- and then, through improvisation, "play them back" for them. Really a great thing. Well, I just had to tell you, when we were seeking a name for our company, I liked "Scheherezade". But, I suppose, there might be those who don't know the reference. Anyway! I'd like to add my voice to trying gluten-free. It's not all that hard and could be a life-changer for you. Lots of info here. Welcome and good luck!

lisa

tracey* Rookie

Scheherazade, welcome to the board :) I'm new to all of this too - and I'm finding it really helpful around here.

Do you keep a journal or a blog? It might encourage you if you can write down how you're feeling everyday, and see progress as you go along.

Good luck :)

elye Community Regular

Welcome, Scheherezade!

Just one more quick thing--many who are celiac find that it takes not just weeks, but MONTHS before they feel a real improvement. I'm sure there are many who stop the gluten-free diet in frustration, understandably believing that "hey, it's been all summer and I'm still tired/depressed/constipated. It CAN'T be the gluten"! Ya gotta give it time...best of luck, and keep us posted!

ravenwoodglass Mentor
Welcome, Scheherezade!

Just one more quick thing--many who are celiac find that it takes not just weeks, but MONTHS before they feel a real improvement. I'm sure there are many who stop the gluten-free diet in frustration, understandably believing that "hey, it's been all summer and I'm still tired/depressed/constipated. It CAN'T be the gluten"! Ya gotta give it time...best of luck, and keep us posted!

This post was so important I wanted to make sure you saw it twice. Very well put and wise words.


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  • 4 weeks later...
Scheherazade Newbie

Thanks for all the encouragement. I'm starting slowly but surely. I'm not very going at carrying through with my goals, so I've been trying to start gradually. So far I've cut out wheat, but I've been lenient on the whole gluten thing... I don't think I've eaten any, but right now I'm just trying to go as long as I can without eating wheat, so if teriyaki is my only option, I'm still going to consider it. For now.

I had a basic blood test done a few months ago and received the "no response is a good response" to my question of having celiac. For whatever that's worth. But I'm so exhausted and brain foggy and apathetic, the kind of worthlessness that so far is immune to a half dozen antidepressants, 12 psychologists/psychiatrists, and even the best efforts of a naturopath. So I'm still hoping that wheat or gluten is an answer.

My biggest barrier is that there's this endless cycle of tired/laziness that means I have about 2 spare hours during the week where I'm hope and can actually cook. If I had more energy I'd shop for groceries and cook food. But as it is, I'll always take an extra half hour of sleep over the opportunity to eat breakfast. It's hard for me to make myself lunches and dinners when I come home from work or school and basically head straight to bed. So my options are pretty limited when trying to find gluten or wheat-free meals away from home. There's always the salad with meat option, but I'm hungry an hour later. Rice and corn seem to be the best restaurant grain replacements, but it's only my second day and already I'm sick of rice!

Last week, I tried to start being wheat-free, and only lasted a day. But then for the rest of the week, I felt sick - diarrhea, gas, the works. Was this a result of the gluten-free/gluten-again shock to the system or completely unrelated? This week, I tried again. My first gluten-free day I started to feel gassy and felt like I would have diarrhea later on in the day, which has since passed. My friend said it sounded like I was going through withdrawal. Could it be some kind of detoxification, getting it out of the system? I don't know. I'm going to keep it up, at least wheat-free, for as long as I can go, but I'm thinking I can't cut it off for good just yet.. more like phase it out, doing 3 days without this week, then 4 next week, or something. Because all I can think about is a nice, chewy sandwich. Quesadillas, oreo cookie ice cream, eggs and toast, brownies.

celiacgirls Apprentice

I just wanted to let you know about my experience with the gluten-free diet. I went gluten-free when I tested positive with Enterolab after my daughter was positive. I was very strict because I had already started learning about it and being strict with my daughter. Within 3 days, I didn't need a nap any more and I needed to get off my antidepressants. I didn't know that those were my symptoms from gluten intolerance. I didn't think I had any and was only trying the diet because of the test result and as support for my daughter.

A couple of years ago, I tried the gluten-free diet because I thought it might help my migraines. That time, I didn't worry too much about hidden gluten. I just avoided obvious gluten like bread and pizza. I didn't notice any difference that time. I thought my migraines were coming less frequently but I wasn't sure. Then it was Girl Scout cookie season, and I decided to do a gluten challenge to see the difference. :) There wasn't a noticeable difference and I didn't go back to gluten-free until I had the testing done.

I'm telling you this because I think it is important to get all of the gluten out of your diet in order to see if it will work. I think even the small amounts of gluten can make a difference. I am not saying you will see results as quickly as I did. I know it will be hard to get started but I have enough energy now that I don't mind cooking. Before, it did seem much easier to go out or drive through than to actually cook something. It seems shocking to me now, but before I went gluten-free, I would go to a fast food place for lunch instead of putting something together at home. I am a stay at home mom so really, it is much less time-consuming to get something here. :o

Do you have a George Foreman grill? You can make a chicken breast or hamburger on that in less than 10 minutes when you get home. I've also done steaks on there and it is quicker than the BBQ grill. Then you could take leftovers with you for lunch. Hopefully, if gluten is your problem, you will soon have enough energy that it won't be such a challenge.

I know about that laziness cycle. I recently ate a supposedly gluten-free lettuce wrap at PF Changs and immediately felt tired and lazy. It led to me laying on the couch all that day and the next. Also, I was too lazy to cook the next night and went out again. This time, I think it really was gluten-free and luckily, the next day, my energy was back.

tarnalberry Community Regular

Welcome. I'm sorry you're having such a tough time finding the energy to go gluten free. Unfortunately, you're not likely to notice much change until you do go entirely gluten free. :( Maybe if you take some time to mentally prepare - figure out what you would eat the next week, instead of making the shift, you'll be better prepared for it? I generally give the advice to stick to whole, unprocessed, naturally gluten free foods. That may mean eatting apples and peanut butter, cheese and yogurt (if you can do dairy), beans and rice, grilled meats, eggs, carrots and bell peppers with hummus, etc. But sticking to things that you can make (and make in a large enough quantity at one time that you can keep leftovers in the fridge so you don't need to cook the next day), may help.

In the end, though, it's one day at a time, and realizing that, if you really want to give this one a go, this may be the focus for a little while, until you get past the learning curve. It's a steep learning curve, and not necessarily a fun one. But there's a bunch of people here to help you out on it.

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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