3 Weeks - No Difference

[granolagal]

I searched this forum and read old posts about "how long did it take you to feel better"/etc but I can't help but still vent here. Sorry for anyone who's read posts like these a thousand times.

I was diagnosed 3 weeks ago and have been STRICT Gluten-Free since the day I got off the phone with my doctor. Following that, I had a terrible sinus infection, migraine headaches, and all of my other symptoms remained (chronic C, dizziness, fatigue, depression, etc, etc). I guess I had hoped that I would feel better by now. My sinus infection has finally cleared up, but I still don't feel "like myself". I just...feel...sick. And my digestive system has just grined to a hault. I was really hoping that I would notice a difference in that area by now. I guess I'm just depressed, and discouraged, and feeling worried that maybe being Gluten-Free isn't going to work for me.......

Anyway, that's my little vent. Thanks to anyone for listening.

[adab8ca]

OK, first, I am sorry that you are not feeling well...And I know it isn't just not feeling well, it's a whole body feeling awful thing...That being said, when I was diagnosed, the dietician I saw said Do NOT be surprised that it takes a year to start feeling better. I was devastated when she told me that but I took care of myself and took it one day at a time and just over one year later, I am feeling better..Be kind to yourself, be diligent with your diet and the healing will come...Eat lots of whole foods, maybe minimize dairy and keep us posted!!

Ada

[Di2011]

This is the best place to come for a whinge, vent, laugh or anything else! You are likely to divulge things here that others DONT want to know!!!!!! Most of us have had a mini-breakdown sorted out by posting on here. If you get the urge to read posts, read them. If you get the urge to post, post. When you are a few months down this track you can reply to others and help them when their first post reads a lot like yours does today.

I went gluten-free in May/June with lots of mistakes in the first couple of months. I've notice a *big* difference in the past 3-4 weeks (so whats that... about 4-5 months down the road). My DH (officially un-diagnosed but my docs agree it is DH) is healing, the bathroom business is what I guess is "normal" most days (I always thought I was normal, but now I wonder how I put up with it my whole life. What a duffus). I'm not suffering debilitating hayfever this spring (I'm in Australia) for the first time in 10 years!!!! (This last thing has been my biggest and bestest surprise - better than any birthday present anyone could ever give me. I would have given up a million dollar lottery win to stop the months and months of nasty hayfever and sinus infections). When I wake up in the morning I want to get out of bed. Today I fit into size 12 (I think US size 8) pants for the first time in about 30 years (At my heaviest I was 20-22 I think US size 16-18)

I haven't taken any meds/supps etc and have very little contact with doctors etc so I'll leave the technical advice to others. About 90% plus of my diet is rice/rice noodles/meat and LOTS of fruit and veg.

[concernedmamma]

It sure is frustrating! We were just talking about this this evening. Our son was diagnosed in March of 2010 via Blood work and endoscopy (at age 5)- After lifelong diarrhea, etc.

His blood work was down to 'normal' within 6 months, but we kept seeing what we thought were 'reactions' and were so frustrated as we thought we were messing up!! Only in the last few months has he been more 'normal'. We have now had at least 2 months of NO diarrhea! Woo Hoo!!! THis is16-17 months post initiation of a gluten-free diet. Of course, tonite, he accidentally took the wrong plate of pizza and took a bite before we could stop him.(our fault- we had 4 extra kids over, it was chaos and we weren't careful). Within 20-30 minutes he threw up once (new symptom) and had diarrhea and tummy pain. I can only say this to those that 'understand'- but this was good for us to see! This is THE very first clear episode of glutening we have ever had. I think he has finally healed and we can now know when he is reacting to something.

Healing can be slow, but it DOES occur. Keep strong and know you are doing the right thing for your body.

Kim

[Kim27]

Magnesium Oxide & Miralax really help get things moving. Work great . Before them I tried everything under the sun.

[AVR1962]

Here's some thoughts to keep in mind. It took me a long long time, made lots of mistakes that I was not even aware of while I was being careful so I'll put this out from what I learned.

If you are reading all labels, are you sure of all the ingredient names to avoid? Great list right here on this site. I found wheat flour in my cooking spray and had been using it without thinking. Chapstick and make-up is another thing I had to be sure of. I found "possible wheat" in my cajun seasoning which I stopped using. If all of that is clean, could something else be othering your system or could you be getting CC in your own home. Are you using the toaster, what about your pots and pans? Are they the type you can scrub clean? Are you using old wooden spoons that were used on pasta before? What about cutting boards and pasta strainers? You have to be that careful.

Did you also go dairy free? Too many times when the villa has been damaged by gluten we also cannot tolerate dairy until we have healing of the intestines. There could be other things causing your issues like soy or high fructose, and I have heard from others that dairy will make them feel dizzy. If you are eating gluten-free foods make sure you look at what it is made with and you might be able to pinpoint soemthing in them that doesn't agree with you. Xanthan gum which is many gluten-free foods as well as coconut milk, some candy, etc does not set well on my stomach.

Is the dizziness an every day, all day thing? or is it a spinning in the head, feeling like you are in a boat even while sitting that lasts only a few days? For me the vertigo (spinning) was related to high fructose, and guar gum, and alcohol.....read more about it if you are drinking any alcohol.....it robs the body of b12, fulate, and potassium, and continues to wreck the digestive system which is really not good if our bodies are having a hard time repairing and absorbing. If it is an every day thing that you have related to gluten, it took me 5 weeks of not getting glutened (this took me 7 months to achieve) and that relate to the gluten, gluten ataxia.

Lastly but very important, what are your vit and mineral levels? If you are having any neuro issues, vits could help.

We are all a little different in our needs and what effects us but there are some basics and the questions are just to help open the doors to possibilities as there are so many. I hope it helps.

[Duhlina]

I was diagnosed 3 weeks ago and have been STRICT Gluten-Free since the day I got off the phone with my doctor. Following that, I had a terrible sinus infection, migraine headaches, and all of my other symptoms remained (chronic C, dizziness, fatigue, depression, etc, etc). I guess I had hoped that I would feel better by now.

I'm right there with you! I've been gluten-free for 4 weeks now and I don't feel any better either!!! It seemed like as soon as I went gluten-free everything went downhill. I came down with the flu and was sick for a week and a half, then felt like I had mono again for another week (didn't go get checked this time), then had the worst period ever. My fingers are crossed that things are going to start looking up from here! Yeesh.

I never had the GI issues that most people did/do, but I do have a lot of other symptoms. I guess we just have be vigilant and continue down this path and hope everyone else is right - that it just takes longer for some of us to feel better.

I am SOOOOO bummed about Thanksgiving this year. My aunt makes THE best stuffing EVER and I can't have any! I tried to make a gluten free version yesterday and it tasted YACK. Blech pooey.

[Di2011]

I'm right there with you! I've been gluten-free for 4 weeks now and I don't feel any better either!!!

I don't ever claim to be a celiac/gluten free guru but *please* please give it a few months.

It took me 5 months. 3-4months of mistakes and tempations and so called 'Gluten Free" food and cosmetics/cleaners etc but Now I feel goood.

Don't let my recovery deter you from medical advice.

If you want to know more about my experience in the past 6 months then please reply

[Bubba's Mom]

When I was DXed about 4 months ago I was led to believe all I had to do was stop eating gluten and I'd feel great. My extreme nausea after eating calmed down, and I don't get as bloated, but I still had/have a lot of symptoms.

I started a log of everything I eat and any symptoms, recommended to me by the good people here that have been through this. I found I was reacting to soy with dizzyness, migraines, etc. and salicylate foods tear up the ulcer I have. Reactions don't always occur right away. Symptoms may show up a day or so later. That log helped me track down the culprits.

Milk can cause some bad symptoms because you can't digest it properly if you have villi damage. I was told to take a lactaid sippliment if it bothered me. Digestive enzymes can help if you eat beans, broccoli, etc. They help your taxed system do it's work.

I had a LOT of intestinal damage. If you do too, you could have leaky gut syndrome? It's where proteins/things leak from your intestines into your bloodstream and cause reactions in your body. It takes time to heal the intestine, so will take time to feel better.

In my case I went unDXed for years. It will take time to heal and rebuild the villi. I get impatient and wonder if something else is wrong. As was just pointed out to me here..it is what is..until one day..it isn't.

I have no idea if there's any truth to it, but there's a Celiac Dr. that said it *could* take one month for every year you went undiagnosed to heal. It's a scary thought to me, but lets me know it won't happen overnight.

It's best to stick to a whole foods diet(fruit, veggies, unprocessed meats, eggs, dairy) at first, rather than eat processed gluten-free versions of a lot of things. Shop the outer perameter of the grocery store. I use a rice based pasta(Tinkyada brand is my favorite), but that's the only gluten-free replacement food I buy regularly. I only occasionally eat gluten-free bread or waffles. I will warn you, many of us find grocery shopping very depressing at first. I still go into overwhelm at times when I'm surrounded by so many foods I can't have. Treat yourself to something special, like a good ice cream, chocolate, or fancy fruit or veggie.

When I first went gluten-free I made a few mistakes. It's bound to happen. Be vigilant about even very small amounts of gluten. Even traces can keep your immune system flared up.

I had to make our three dogs gluten-free too. If they ate gluten and licked their fur..or me, I'd get glutened. Their water bowl was like a toxic waste dump to me. So, if you have pets, consider them as a possible source.

Kisses from gluten eaters can get you too. There's so much to learn!

Good luck. One day we'll be the ones here who can tell others we've made it through the hardest part and are happy and healthy gluten-free.

[frieze]

I'm right there with you! I've been gluten-free for 4 weeks now and I don't feel any better either!!! It seemed like as soon as I went gluten-free everything went downhill. I came down with the flu and was sick for a week and a half, then felt like I had mono again for another week (didn't go get checked this time), then had the worst period ever. My fingers are crossed that things are going to start looking up from here! Yeesh.

I never had the GI issues that most people did/do, but I do have a lot of other symptoms. I guess we just have be vigilant and continue down this path and hope everyone else is right - that it just takes longer for some of us to feel better.

I am SOOOOO bummed about Thanksgiving this year. My aunt makes THE best stuffing EVER and I can't have any! I tried to make a gluten free version yesterday and it tasted YACK. Blech pooey.

Unless you were lab. diabnosised with the "flu", it is quite possible you had "withdrawl" symptoms.

[Duhlina]

Unless you were lab. diabnosised with the "flu", it is quite possible you had "withdrawl" symptoms.

Oh no, I most DEFINITELY had the flu! It was not pretty. It was going around our office and I was one of the lucky recipients.

[granolagal]

Thanks everyone for your responses. Posting on here and getting so much support is so wonderful.

@adab8ca: the strange thing is that my doctor (GP) said I would probably feel better in "a couple of weeks" after going Gluten-Free. So the fact that I feel pretty much the same as I did a month ago, is so discouraging. The only way I feel "better" is that my sinus infection is finally gone (it took 2 1/2 weeks). But with what you said, and others on here as well, it looks like "a couple of weeks" may not have been a realistic target time.

@diandliam: thanks for sharing your story. I guess just knowing that it took other people several months to feel better at least lets me know that I shouldn't give up hope.

@concernedmamma: I think my worry is - how will I know if I'm glutening myself accidentally? I dont struggle with D. So I don't get the (advantage??! = terrible word...sorry) of having an automatic stomach reaction. So for me...I just constantly feel terrible and can't isolate why.

@Kim27: apparently Miralax isn't available in Canada.... So I may try to find something similar that's available around here. Thanks for the tip.

@AVR1962: I haven't tried going dairy free...for 2 reasons. Firstly because I'm vegetarian so dairy is a great source of protein for me. And secondly...because I just love it so much!!!!!! I eat so much cheese and sour cream, yogurt (I called the manufacturers of many brands and only found one sold in my grocery store that the company says is Gluten-Free). So that's why I haven't given it up. My dizziness isn't all day everyday. It's just every once in a while my head goes "whooooop" (if that explains it...) Its scary when I'm driving. My vitamin/mineral levels are very low. I have malabsorption problems - big time. That's why my iron is at 10 (even after being on supplements for 3 months). So maybe it's related to that. I'm not sure... My body is so broken right now, I don't know what is causing what at this point.

@Duhlina: Thanks for sharing your story too. Looks like we're in the same boat. I'm definitely dreading Christmas. All the baking and traditions I'll either have to abstain from or do a bunch of research to try and make gluten-free. So depressing. Wish I could just feel normal...

@Bubba's Mom: I don't know if I have leaky gut. I've never heard of it. How would I know if I have it?? I'm a very healthy eater (even before going gluten-free). I ate mostly fruits/veggies/whole grains/nuts...etc (no meat as I'm a vegetarian). I believe in the "eat food, not too much, mostly plants" philosophy. I avoid processed foods normally. So I'm trying to avoid the gluten-free processed foods as well. I'm just finding it hard because I eat a lot of wraps - for egg salad, fajitas, burritos, soft tacos, quesadillas, etc. So that's been hard. I haven't found a good replacement for that. I don't really like the idea of rice/potato starch wraps. Just white carbs basically with no nutritional value. Oh man...I didn't even think about my dog food or my husband's kisses!! How is it possible to be totally gluten-free?!? It just seems impossible!

Anyway, thanks again for everyone's support and helpful hints. I still have some work to do it seems. And I guess I have to be patient. It's hard right now. Hard to go out and be told at a restaurant that there's nothing there I can eat - not even salad. And go home, crying, and thinking "why am I doing this!??!". But I know it'll be worth it WHEN my problems get better. (I'm *trying* to stay positive and replace my "if"s with "when"s).

[AVR1962]

It really does get better. For me it was like taking 2 steps fwd and 1 step back, inching my way thru it all. THere would days when I would wake up and think "how did this happen to me?" I could beat myself up with questions I'd never have answers to but the one thing I know is that any gluten will make me sick so I have to stay away from it. Sounds like you are making steps to getting this figure out. Good luck to you!

[Bubba's Mom]

If you have villi damage it's very likely that you have leaky gut. The cells that line the intestine and keep things where they belong are broken down...and things leak out into your bloodstream and cause problems in other parts of your body. It's one of the reasons some of us get dizzy or brain fog, or migraines, or joint/muscle pain.

A suppliment of L-glutamine helps heal the intestine and it will take time too. Eggs have a healthy dose of it naturally if you are against suppliments? I don't know if you eat eggs? Probiotics are really healing too, so if you're eating lots of yogurt that's great!

It sounds like you have a pretty healthy style of eating, which is good?

I was VERY careful about gluten when first DXed but still kept getting gluten symptoms. It took a bit of thinking about it to realize the dog's food and biscuits were causing me harm. Cleaning the water bowl was dangerous because they'd drink after eating their gluten food so it was cc. Their kisses had gluten and their fur had it too from them licking themselves.

We have 3 large dogs, so switching to a grain free food was pricey. I've found that they eat less of it than the ones with cereals and their coats are beautiful. We use Taste of the Wild brand now. It's mostly Salmon and Trout, with sweet potatoes and blueberries, etc. Our older gal seems to have less Arthritis now. Maybe grains aren't good for dogs either?

[frieze]

We have 3 large dogs, so switching to a grain free food was pricey. I've found that they eat less of it than the ones with cereals and their coats are beautiful. We use Taste of the Wild brand now. It's mostly Salmon and Trout, with sweet potatoes and blueberries, etc. Our older gal seems to have less Arthritis now. Maybe grains aren't good for dogs either?

lol, can you see them running thru the wheat field eating it????

[TTNOGluten]

lol, can you see them running thru the wheat field eating it????

I completely understand what you are going through, it has been 2 1/2 months for me and I still feel like dog doo-doo, abdominal pain daily into my back, overwhelming fatigue with sleeping 10-14 hours a day(use to require about 7 hours) was previously working out daily doing p90x and felt awesome, now I struggle to get out of bed somedays. I know for me, seeing m y limitations is leading to a lot of depression and anxiety which I am sure is compounding things terribly, sometimes I just feel so much generalized malaise and fatigue I don't even know what is the source, I just flat out feel like crap, almost like I am developing some flu-like illness without the other symptoms, just that gickkkk feeling like I want to lay down and curl up in a ball and sleep the day away. I am trying with my support network of friends and family to keep moving forward, my kids and wife are my inspiration to keep trying. I feel for you so much, and am living so much of what you are typing in your post as well. Please know you are not alone

[jswog]

Maybe grains aren't good for dogs either?

Dogs are CARNIVORES!!! Of course anything besides meat and bones (think wild wolf...whole carcas) is not good for them!!! Grains of ANY KIND are killers for dogs, cats, and any other carnivore we keep in our households as pets!

[heidi g.]

Kisses from gluten eaters can get you too. There's so much to learn!

Good luck. One day we'll be the ones here who can tell others we've made it through the hardest part and are happy and healthy gluten-free.

well that makes sense. my boyfriend was eating a cracker and gave me a kiss and ughh felt like i had to barf for like 3 hours and then it went away when i started passing gas. Unbelievable on how much the smallest trace can make u feel like u want to jump off a bridge

[heidi g.]

@Bubba's Mom: I don't know if I have leaky gut. I've never heard of it. How would I know if I have it??

you would know if you had it if you take acidophilus and get a bad reaction to it. or if your not absorbing vitamins and calcium at all. i believe i have it :/ i probably have every freakin thing. The only thing that doesn't make me sick is rice and vegetables. that is the ONLY meal my body feels normal after. So i chalked it up to leaky gut and maybe i have to heal that to fully get the full affect of my gluten free diet. pshhht with my luck i doubt it but its worth a try

[AVR1962]

I completely understand what you are going through, it has been 2 1/2 months for me and I still feel like dog doo-doo, abdominal pain daily into my back, overwhelming fatigue with sleeping 10-14 hours a day(use to require about 7 hours) was previously working out daily doing p90x and felt awesome, now I struggle to get out of bed somedays. I know for me, seeing m y limitations is leading to a lot of depression and anxiety which I am sure is compounding things terribly, sometimes I just feel so much generalized malaise and fatigue I don't even know what is the source, I just flat out feel like crap, almost like I am developing some flu-like illness without the other symptoms, just that gickkkk feeling like I want to lay down and curl up in a ball and sleep the day away. I am trying with my support network of friends and family to keep moving forward, my kids and wife are my inspiration to keep trying. I feel for you so much, and am living so much of what you are typing in your post as well. Please know you are not alone

Hang in there! This is common and I understand perfectly, been thru it myself. It does get better. You have to be consistant and you have to figure out what your body needs, or doesn't need. Besides reacting to various foods and in need for our systems to repair, many of us deal with absorbtion problems which lead to many of our symptoms, and unfortunately not all docs go into this. If they can't give you a prescript then it seems like many times we are on our own.

It has been 9 months ago today that I was in ER, docs had no clue what was wrong with me. It wasn't thru them that I made the choice to go gluten-free. Found out thru bloodwork my vit and mineral levels were terribly depleted and I read and read and read. Yesterday I had a follow up with doc who laughingly (good guy, I think he knows his stuff) called me the vitamin queen. He told me to keep it up, that I was right on. What I can say is it took me a long time to get things figured out, made alot of mistakes, the symptoms I had were mostly neuro and all have been able to be helped by getting the proper nutrients into my body.

It is all worth it, it just takes time! Be patient with yourself.

[UnhappyCoeliac]

I come in here to vent as well!

3 days Gluten-Free and have a virus and diarrhea hoping it will pass. It sucks it just plain sucks bad enough you cant eat anything good in the world but the 'good' food makes you feel like shyte too.