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Help! I Am Overwhelmed!
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27 posts in this topic

Well, after close to 25 years struggling with terrible stomach pains, diarrhea, bloating, heartburn, gas pains, fatigue, muscle aches, always feeling just

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I am sorry you have had to go through so many years of suffering. I know it is overwhelming changing your diet. There is alot to learn. The body is also spending incredible energy to heal at this time. It may not be so good today, but you do have hope that improvements will be made.

Here is what I am doing: I am gluten free since May 18, 2012:

Gluten Free Diet

Supplement program

active work.

Rest when needed when possible.

I think you can find yummy food that does not have gluten. I haven't found much that I don't like. Today I made breakfast muffins

They had a lttle coconut flour, eggs, baking soda, salt. I flavored it with ground fenugreek. They were good. I use also almond flour, bean flours, and buckwheat. I made grain free granola which is very yummy. I believe you will find your new diet very yummy as you discover it.

You have so much more hope if you have a gluten problem and are not eating gluten. One day you will realize it. Hang on in the mean while.

Diana

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The hunger will ease. You are going through gluten withdrawal. Try eating a bunch of small meals instead of the usual three a day. Go to the thread, "Newbie 101" to learn more about coping with the diet, avoiding cross-contamination, and lots more. And feel free to ask as many questions as come to mind, to cry on our shoulders, or rant and rave. We have all done that here and you'll never find a more knowledgable or supportive group of people anywhere. Welcome to the club none of us wanted to join! But keep in mind that it gets easier, and as you start feeling better and better, you will be thankful that it's celiac - no drugs or surgery required to get better. Just a healthier diet that you will learn to enjoy. :)

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Thanks so much to both of you, I appreciate the support. My dietitian told me about 2 to 3 months until I can start feeling a lot better.....I hate the heartburn :blink: but am thankful for the diagnosis.

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Just a heads up, you may start feeling better even after a few weeks, but after having celiac for so long, you will probably take much longer to completely heal. And believe me, there will be lot's of bumps in the road. You may develop intolerances to other foods (lots of us do) and you may react to things there is no earthly reason anyone should react to. While you are healing all sorts of crazy things can happen.

Check out my content. You will see some of my earlier posts are like a seesaw! "I feel so much better!" a week later, "I'm so sick!" "YAY! I made some delicious gluten-free cornbread." A few days later, "Oh no! I reacted to the cornbread!" "Yum! Baked sweet potato!", followed by "I got D from the sweet potato!"

Just keep in mind that even though you will have setbacks from time to time, you are making progress. And we are here for help and advice. We'll walk you through it and pick you up if you should stumble. If things get weird like they did for me, someone here will help you to figure it out.

In the meantime, don't let all that I just said get you worried. You might be one of the lucky ones like my Mom, who went gluten-free and never had any other problems. :)

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Eat Lola, eat! Bartful is right --- gluten withdrawal. Starving, unending hunger!!!!! I literally would vacuum with one hand while eating an apple with the other. I could not stay away from food for 10 minutes. I was ravenous constantly! Your body is trying to heal. Don't worry about weight right now; just eat! Your body needs it. Eating more protein will help as well as some good fats --- good fats help digest protein & carbs. If you eat an apple then have a few cashews or peanuts with it or smear the slices with some peanut butter or nutella. And UP, UP your protein in the morning.

Welcome to the board! And we're so glad you finally have found out what your problem was.

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withdrawl is fun isn't it?

At any rate, as for the heartburn, do what the others have said and eat smaller meals more often. This is something i have to do to keep my GERD in line.

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I am so happy to have found this site, It's so nice to know I am not alone and the positive feedback.

By the way, is it possible to feel great and then have a day of gas, bloating and D? I was feeling better until today, go figure the day after I met with the dietitian! :P my concern is also my weight, I am 5'4" at 112 pounds....seems like you could talk forever about Celiac!

Thanks again everyone! :)

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By the way, is it possible to feel great and then have a day of gas, bloating and D?

Welcome Lola!

It is possible and highly probable during your first weeks and possibly months.

If the symptoms persist you may need to remove dairy - it is tough to digest while the villi of the small intestine are healing. Don't remove anything else besides gluten during these first weeks unless you are certain the food is bothering you. Sometimes it is just hard to digest without a specific food causing the problem. If you eventually find that you do need to remove other foods, it is likely you'll be able to eat them again once you have healed - except gluten of course.

It is also possible that you are getting small amounts of gluten somewhere. It takes time to get all sources out of our diet.

The transition simply takes time. Some days will be better than others. Set-backs are possible - I hope you have very few.

Take care :)

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Thanks Lisa - Does lactose free still contain dairy? I have been using lactose free milk, but I do use some half & half in my tea .... that could cause it? oh I am confused! :rolleyes:

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Thanks Lisa - Does lactose free still contain dairy? I have been using lactose free milk, but I do use some half & half in my tea .... that could cause it? oh I am confused! :rolleyes:

It could...but I would wait a bit longer before removing anything else. Bloating, etc. can happen for many reasons while you are newly gluten-free. If your digestive symptoms don't improve in the coming weeks, then I'd look to other possibilities.

Another way to check the half & half specifically would be to remove it for a week to see if you still bloat. If you don't, then try it after a week.

Personally, I'd wait a bit because you may improve by just remaining gluten-free.

Good Luck :)

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Lola, I'm 5' 1.5" & 99 lbs. I was 97 lbs. I'm still trying to get some weight back on. I'm now 10 months gluten-free. It takes time. Be patient.

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Welcome LolaB!

I found this site recently as well! You are in the right and safe place! The advice is phenomonal! And best of all, you will find support, understanding, compassion and (my personal favorite) humor! Which also helps as you work your way through "the mire" that most of us feel at the beginning!

I too went through a stage of "starving"--which I was both because I did not know what to eat and I was not eating often enough. You have already gotten some great info given to you! For me, I keep "safe snacks" around me. As you know, we are all different (and yet similar) with the foods we can eat. For me, I wa "desperately" hungry and on a road trip. I did not pack any snacks--but I *had to eat*!!! So my hubby found a grocery store, and I picked up Boar's Head low salt, no gluten etc. turkey and some "plain" (no flavored) rice cakes. I ate them, and found it filled me up. I was back to my "happy" place! :D

When I branched out and tried the flavored rice cakes, I had trouble! So, just sharing some info that helped me--

I too am still a Newbie here, but I have found more information and support than I could ever imagine!

A hearty Welcome to You! :D

Well, after close to 25 years struggling with terrible stomach pains, diarrhea, bloating, heartburn, gas pains, fatigue, muscle aches, always feeling just

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I am overwhelmed too. Going Gluten Free is very new to me. It is a complete change. It's kind of hard right now. I worry how sensitive I am. I read about cross-contamination and now I worry about that! Really, does all it take is a tiny tiny amount of gluten to offset your progress? The other day a friend of mine made me a salad and proudly told me she took off the croutons for me. It was so hard to tell her I couldn't even eat foods where bread had touched something else. Do you absorb gluten by touching it, but not eating it? I make meals for my family, do I have to avoid touching wheat products forever? Can't I just wash my hands right afterwards? Why so little to be so sensitive to it? That's a mystery to me! I am trying to stay upbeat and have a good attitude towards this new way of eating and lifestyle. Even with reading a lot about gluten sensitivity, there is so much more to learn!

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Just touching the croutons will not cause a gluten reaction, but eating food that croutons have touched most probably will because they leave behind trace crumbs of gluten which most celiacs react to. Some are less sensitive and can get away with just removing the croutons, but most are not. So long as you wash your hands after possibly touching gluten and always before eating, you should be fine. Sometimes breathing air in a kitchen where gluten flour has recently been used will set you off because flour particles tend to hang in the air and can be inhaled.

Cross-contamination is a tricky issue. Gluten can linger on cooking utensils and pans, crumbs in toasters, on cutting boards, on someone's hands who has been handling gluten foods and then handles yours. In restaurants you should always ask them to put on clean gloves to handle your food. You will learn the dangerous situations and how to control them. Do not despair. Every day it gets easier and pretty soon it becomes routine. :)

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I am 5'8" and was down to 103 lbs when I was sick, it was icky and I totally feel your frustration Lola. It sounds like you're pretty close to normal range for height & weight, and that will resolve itself with time. You may be surprised, I still haven't gotten past 135.

The hungry will get better. I have found there are certain food combinations that help me feel the most full. Winter squash is very filling. Dark meat chicken and sweet potatoes for dinner works really well for me. Meatloaf and potatoes works good. Try sticking to eggs for breakfast, or just eat dinner food for breakfast. I love soup for breakfast. Normal cereal/muffin/danish food, even though it's gluten free, will not serve you well right now.

And that's a gorgeous pup!

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I feel overwhelmed as well. It's all really new to me too. Last year right after Thanksgiving--as I always host for our family, I had a terrible break out rash. Had the rash prior to that Thanksgiving, but that was the real date in my life I finally figured out for myself it could all be Gluten Related disease. I woke up in the middle of the night with my skin just burning! I put cold ice packs and cold wash cloths on my skin three times during the night. Of course I purposely ate everything gluten I could, including Home Made Bread from scratch. I have usually made home made bread for special holidays for years and years. My family and friends love my home made breads and biscuits! I love my home made bread and biscuits too! Both of these include real yeast after it has been activated. It always TASTES awesome. Now it should be never more. Sigh. I am trying to get over this. My skin rashes are horrible. They itch with an intensity that is amazing even to those who know what this is all about.

I am still rather overwhelmed as to what this disease does to us! I am so amazed as to how long and hard it has taken to diagnose! Three Years plus!! And I think I have been suffering many years prior to this skin outbreak from three years ago.

I feel for you! You ARE NOT ALONE! Many of us suffer unknowing why and for what reasons! We puzzle as to why this is happening to us! Our doctors are scrambleing as to why we are suffering these symptoms!

Last year after my Thanksgiving breakout, I went to a new dermatologist. He and his partner took one look at my red, blistery, patchy, symetrical rash all over my body and they both thought it looked like "The Celiac Rash". They took scrapings and biopsies. Guess what. They came back negative for Celiacs!!! Because the results of the blood tests and the biopsies came back negative for Celiac's, I thought, Good! At least I don't have to go Gluten Free!! At that time I also found out the biopsies they took showed allergy to Sulpher. At the time I was on a sulpher based drug for water retention. I was taken off that, and put on Prednisone. Those two things started to clear up my skin. I thought, good! I can still have my beloved wheat products. After the Prednisone drugs wore off, guess what? My skin rash came back with a vengeance! Itch, itch, itch!!! Dang it!

Rash, scratch and itch! Hence my sign on name: Really Good Scratcher! I can scratch anything and any where just to relieve this annoying itch! I have the best tools for scratching this annoyingly itchy skin! I find I can't get relief until I scratch myself silly and I am probably leaving huge areas of my skin to be scarred permanently.

Yes I am totally overwhelmed. It is very daunting to change a lifestyle of eating habits. I have been told all I can eat is celery and water. Wow, that is very appealing. NOT!

Still, I am open to suggestions, advice and shopping lists. The lifestyle changes I must make will be very hard, but I am willing to try. I would just love my skin to clear up and STOP ITCHING!

Overwhelmed? Most certainly! But I bet we are not alone!

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Thanks everyone for the posts and JNBunnie1 thanks for the compliment on my puppy, she is adorable and her name is Lola :) This site has helped me a lot, and I have learned so much and appreciate all the responses and support. :D Sorry for Really good scratcher - hate to say this but I never experienced the itching skin, but that sounds very annoying!

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Hello everyone, I am also new to this site and a wife to a husband with Celiac. He had been sick for about 12 years and mis diagnosed many many times. Finally we had a niece we were talking to and she has it and we talked symtoms so of course my husband went in for a blood test. They called back and said he tested positive. They wanted to schedule him for a biopsy. We have a very large deductible so I asked them if it was positive would the treatment plan be different. They said no so I said no to the test. He has been gluten free since June 10. He was also very thin because of the lack of nutrients. He has now gained about 20 lbs. and doing awesome. I shop and make sure he has staples but he is good to cook for himself. I work out of the home and he is a farmer so he is around for all his meals. Sometimes I come home and he has had rib eye steak for lunch. We try to keep things simple. Meat, potatoes or rice and veggies. He loves potatoes and eggs so he eats them lots. I do love to bake so I make him treats every now and then. He doesn't like gluten-free bread or pasta. He would rather go without so we do. He also likes to snack on granola and I pack it with as much protein as possible. He eats like there is no tomorrow. He says he just can't get enough food but he has gone for so many years with no appetite and now he is back the way he was in his 40's. We raise beef, pork and lamb. I have 3 freezers so he eats alot of proten.

He doesn't take any supplements because he feels so good. Before this I was always making him take a handful of things just to try to keep his nutrients up. We are going to go a year and then have his blood tested at our local health fair and see where his levels are. I know they will be good just because he looks and feels good. good luck to you and remember to keep it simple.

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Hi ReallyGoodScratcher,

Have you checked into the DH (dermatitis herpetiformins) section of the board? They usually reccomend avoiding iodine in the diet when the rash is present.

Hi Pam Larsen,

You sound like a great wife! :) Being very hungry is something that tends to happen to some people for a while after going gluten-free. Has your hubby been tested for vitamin and mineral deficiencies? That's a good thing to check into as untreated people usually have some deficiencies at first. Stopping the vitamins might be ok but perhaps it would be good to check those levels too. Sounds like you are doing things right tho, so that's great. :)

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Oh, I feel your pain my dear!! It's so hard having debilitating health issues for YEARS and not knowing what's causing them. My stomach hurt every single day, and I had so many health issues that I went to so many doctors to treat... and none of them ever helped.

I'd HIGHLY suggest seeing a holistic nutritionist ("holistic" being the big emphasis!)

I went gluten free three years ago, still felt sick for the first year, and stumbled around not knowing what exactly to eat that would help. I thought that just being wheat gluten free would help, but that wasn't right! Eventually I went to a naturopathic doc who I found on this website (which is not only for thyroid conditions, but all auto-immune disorders) http://thyroidbook.com/practitioner-locator.html

He put me on a diet that helps heal the gut, and treat other conditions like candida that may be present. Also, finding out what nutrients you're deficient in is really useful, because then you know what kinds of things you need to eat in quantity.

Just going wheat gluten free doesn't do it for most people. Often because of the damage done to our intestines we have way more food sensitivities. Also, ALL grains have gluten in them, so if you keep eating grains, it will keep irritating your digestive tract. A full elimination diet is the best way to start, since then you can cut out everything that is keeping you from healing.

This is a crazy new gluten free world you've come into, but don't despair!!! Health is on it's way, just have patience and listen to your body. :)

The best of health to you!

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Hey everyone! I have been gluten free since Sept 22/2012, but do believe I have been "glutened" twice, once after hot chocolate which btw looked perfect to make, minus the milk of course, but no I was wrong. Wayyyyyy wrong, I also added a tiny bit of "lactose free" cream to it and boy was I sick! omg! the cramps were INSANE.....anyways, I know it was the cream since I have had a really hard time with milk so far. But I can eat cheese? weird! but, seems this past weekend I have been feeling like crap (lol) tired, stomach bloated, sore feeling, not good stools, over all not well. I do believe these are symtoms of being in contact with gluten. My question is ....... I have not felt hungry, I make myself eat, but have no appetite at all! has anyone else felt this way? I wonder if it is because I feel so crappy? Please help! :rolleyes: I did eat a "gluten free" loaf my neighbour made for me, but her kitchen might not be as gluten free as mine and that could be where I got glutened from. This loaf was made Friday, today is Monday and for the past few days I am been feeling ill. Any chance it is the loaf?

<_<

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Every chance, I would say :( Others' 'gluten free' cooking can be one of our biggest hazards. Just think of all the lengths you went to to degluten your kitchen, and then think of that loaf being made in a regular kitchen and all the opportunities for gluten to hop in along the way. Off utensils, boards, pans, contaminated ingredients...

It is wonderful that friends will go to that effort for us, but it can also be dangerous to our health if they do not fully comprehend what it takes to make something gluten free. It is perfectly natural for people to think, "No gluten ingredients, ergo gluten free." But we all know this not to be true.

Hope you feel better soon, and recover to have a wonderful Christmas. :)

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Hi everyone! I am back! diagnosed September 22/2012 was doing really well until this Christmas, seems like I still do not feel well. Bloating, D, cramps, pains over all my bowels are not well. I have been on a strict gluten free diet, slowly starting eating chocolate again (wonder if its that) and my weight has stayed the same just a slight drop ( I weighed myself this morning) I wake up with a funny stomach or heart burn ..... I am worried I am not getting better and worried I am never going too. Could someone please send some comments before I drive my husband insane :P with questions!

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Welcome Back Lola!

I certainly wish I could tell you that you will be 100% better very soon, but the truth is we all heal at different rates. Have you been completely gluten free for four months -- I know for me it took about that long to really weed out all the gluten from my life. Is your kitchen gluten-free or combined? Combined is fine -- just takes a bit more care to assure your safety.

Are there other foods besides gluten and chocolate you have tried removing from your diet?

Hang in there -- it will get better and make sure you come back anytime -- we have all been through it and make a much better sounding board than family at times.

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    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
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