In Desperate Need Of Some Positivity :/

[IrishHeart]

Let me know when that handbook comes out IrishHeart, I want to be in line for a copy

@Zebaldwin,,, as IrishHeart said you are not bugging anyone,,, we all learn when others ask questions

Chillster!

I may need input from the "pros" on here for that book and I'll give them to anyone who contributes...how does that sound?:>)

Zack

Just this AM, I was having a good cry for myself and thought...man, I NEED to ask if someone will share MORE success stories for inspiration and someone posted that very same question and I JUST read it and now, I feel better!!....so all questions are good questions and we all benefit.

This is a brother/sister hood.

[txplowgirl]

Hi Zack, I am what we call super sensitive on here. I react to anything made gluten free. I am on a whole foods diet now for about 1 and a half years. I started gluten free 2 years ago and it took me 6 months to figure out that I not only reacted to the gluten but to dairy, soy, some fruits and the nightshade vegetables also. Big bummer.

I had stomach issues but I also had the nuerological problems too. My brain fog and migraines didn't go away until I had completely removed the soy and dairy.

I have a feeling with what you said about the eggs you have a problem with them. My advise is to cut the eggs out for 2 weeks then give them a try. I bet you'll have your answer there.

But hang in there, you could also be going through withdrawals also. I know I sure did. Everything felt worse for about 3 weeks before I felt any difference. Because from what I researched is it didn't take a week for your body to get sick so it will take a while for your body to get rid of the gluten poison.

Hang in there and give it time. In six months you'll be glad you did.

[zebaldwin]

Thanks so much for the ongoing support! Honestly, even though I'm not seeing the results I want, I have no idea where I would be without the people on this website (and I know a lot of others would agree with that)

I got my impulse buy threelac in the mail tonight...which I am going to try and return (and just try a "normal" probiotic)

I think part of the reason I am so impatient is seeing people with my symptoms who did see differences within a week or two...but I know everyone is different (I seem to always get the short end of that stick!) And that not seeing results makes me go crazy wondering what I'm doing wrong now!

Couple unrelated questions, I am doing the more "whole" foods diet now...and I have been recommended a few times to try and not eat sugar. Dont we need sugar to stay healthy? Is there a way to deal with that?

Second, I bought generic acidiphilus for a probiotic, and accidentally left it out of the fridge for a while (probably 8 or 9 hours) should I just throw it out?

Thank you plowgirl! Every time I hear of someone who had brain fog/ migraines/ weakness and got better, I get a new spark of hope!

And Irish, I cant wait for the day that I am in the position of giving advice I sure hope it comes.

[IrishHeart]

Thanks so much for the ongoing support! Honestly, even though I'm not seeing the results I want, I have no idea where I would be without the people on this website (and I know a lot of others would agree with that)

I got my impulse buy threelac in the mail tonight...which I am going to try and return (and just try a "normal" probiotic)

I think part of the reason I am so impatient is seeing people with my symptoms who did see differences within a week or two...but I know everyone is different (I seem to always get the short end of that stick!) And that not seeing results makes me go crazy wondering what I'm doing wrong now!

Couple unrelated questions, I am doing the more "whole" foods diet now...and I have been recommended a few times to try and not eat sugar. Dont we need sugar to stay healthy? Is there a way to deal with that?

Second, I bought generic acidiphilus for a probiotic, and accidentally left it out of the fridge for a while (probably 8 or 9 hours) should I just throw it out?

Thank you plowgirl! Every time I hear of someone who had brain fog/ migraines/ weakness and got better, I get a new spark of hope!

And Irish, I cant wait for the day that I am in the position of giving advice I sure hope it comes.

Zack,

Naturally occurring sugars --in foods, like fruits, veggies,grains, dairy--are used properly by the body. ADDED cane sugar is not necessary for anyone (even though we all like it!)

Hon, I haven't met one person on here whose brain fog or muscle weakness disappeared in a week or even a month. Sorry. Please stop putting that pressure on yourself. Muscle recovery take time. Replenishment from malabsorption takes time.

SOME people see relief from gluten-induced headaches and diarrhea/stomach pain in a week. But the mainstream literature that says "many people see results in one week of starting a gluten-free diet"...is misleading.

YOUR VILLI in the small intestine begin healing the minute you stop eating gluten. BUT body-wide recovery takes time.

You are young. It will happen faster for you!! You are LUCKY!!

Most of us are much older and didn't even know we had this our whole lives--we just knew we felt like sh-t and suffered for years and the damage is HUGE. We have to wait as much as a year or 2 even.

You really need to read about what happens in a leaky gut. The more you understand WHAT the process is, the more you will relax about recovery time.The small intestine is LONG and to heal all of that takes time.

If nothing else, get a copy of "Living Gluten Free for Dummies" by Danna Korn. You can buy it used from Amazon or borrow it from the library even. It's very helpful.

The acidophilus is fine.

You have to stop stressing so much. The incessant stressing/worrying is familiar to us--it's a by-product of low adrenals and vitamin deficiency. I KNOW, I lived it for 3 years but now, I do all I can to relax because I know I will get well IN TIME. It doesn't mean I don't feel worried at times and even freak out and say WTF and why me? and stuff like that. But, I keep my eyes on the prize--good health. Truth is, I live in chronic pain. I had GI stuff, head fog, loss of memory,my hair fell out, and on and on...MY muscles are so compromised I can barely use them without searing pain. I can't sit, stand, lie down or walk without pain. I have so many awful symptoms ---you would not believe my story! If I were not so stubborn, I might have jumped off a bridge rather than live like this. Yet, I KNOW in time, I'll be better. Believe me, I LOVE to hear success stories all the time. It makes my heart soar to know I will get well too.

I have seen my head clear and my sleep improve and I do not live in the bathroom every day. It took 8 weeks. Awhile ago, I could not have written all these sentences without making mistakes and double checking it over and over to make sure it made sense. I would have been fearful about even communicating on here.In the past 2 years, I developed weird sadness and anxiety and I have never been shy in my whole life!! I was that sick. So, trust me, you are catching this thing early so you don't have worsening symptoms!!

I did not tell you that to make you feel bad. I told you so you would see that as bad as your symptoms are, you will feel better soon.

Your fog will clear too! your headaches will go away too. But you have to HEAL YOUR GUT first.

Take a good gluten-free multivitamin, eat MORE protein,(you need it for muscle repair) and drink water...RELAX. BREATHE. DO SOMETHING FUN!! It's gonna be all right!!

[zebaldwin]

Thank you Irish

I'm sorry I come across as so stressed and a little out of control (guess I am!)

And thanks for dealing with my whining and still being so positive!

I am sorry you have suffered so much :/ but I am so glad you are seeing results!

Like I said, it's not the waiting I stress about, it's the not knowing if this is really the problem. I had negative bloodwork (was only one test though and I know people with neurological problems have more false negatives) but I just sit wondering how long I need to try this to know if it is truly the problem or not.

My dad is trying to get me an appointment next week when I am on spring break for this supposedly amazing neurologist who will hopefully be understanding with all of this. (even though I have already seen one). My dad is awesome with all this, but I think it affects him just as much as me that I'm sick, and he can go a little overboard (in a good way I guess)

In the meantime, just to need to be patient, find the money to buy food haha, and keep at it.

Once again, thanks so so much.

[IrishHeart]

Thank you Irish

I'm sorry I come across as so stressed and a little out of control (guess I am!)

And thanks for dealing with my whining and still being so positive!

I am sorry you have suffered so much :/ but I am so glad you are seeing results!

Like I said, it's not the waiting I stress about, it's the not knowing if this is really the problem. I had negative bloodwork (was only one test though and I know people with neurological problems have more false negatives) but I just sit wondering how long I need to try this to know if it is truly the problem or not.

My dad is trying to get me an appointment next week when I am on spring break for this supposedly amazing neurologist who will hopefully be understanding with all of this. (even though I have already seen one). My dad is awesome with all this, but I think it affects him just as much as me that I'm sick, and he can go a little overboard (in a good way I guess)

In the meantime, just to need to be patient, find the money to buy food haha, and keep at it.

Once again, thanks so so much.

Zack,

I don't blame you one bit for pursuing tests, etc. I saw 3 neurologists and had a brain MRI. I had more tests than you can imagine. So sick, so much pain and they all shook their heads at me and said I don't know.

(until I found the right doctor)

Now, you and I both know we are not making this stuff up! SO MANY people test negative. But their positive response to a gluten free diet is the answer they were looking for.

I tested negative on blood panels too.

My doctor says it is 30-40% false negative.

It is GREAT that your Dad wants to help you get well and will do whatever it takes to get you there! I have an awesome husband who does the same for me.

In the end, though, Zack it is YOUR desire to get well that will get you there. You are strong and working tirelessly to find the answer. We have to be our own best advocates when it comes to our health.

Please try to stick with the gluten-free diet. I wish I had---I lost 2 years to bad advice from doctors. Please understand that many doctors don't know anything about leaky guts or how celiac or gluten--or any food intolerance-- works. I just hope you to give it a fair trial. A few months at best.

After your consult, PM me and let me know, okay? good luck!

[zebaldwin]

Thank you and will do!

One more food-related question. Eating just gluten free I was eating a lot of "natural choice" hormel pre-packaged lunch meat. They are gluten free and all natural with no preservatives. Would they fall under my "basics" diet I am trying to keep? (ingredients:chicken breast or ham etc, water, salt, turbinado sugar, carrageenan, natural cure which is celery powder, sea salt, lactic acid starter culture; backing soda)

It would help a lot and be a lot easier than cooking all my meat...that's why I'm asking.

Thank you

[IrishHeart]

Thank you and will do!

One more food-related question. Eating just gluten free I was eating a lot of "natural choice" hormel pre-packaged lunch meat. They are gluten free and all natural with no preservatives. Would they fall under my "basics" diet I am trying to keep? (ingredients:chicken breast or ham etc, water, salt, turbinado sugar, carrageenan, natural cure which is celery powder, sea salt, lactic acid starter culture; backing soda)

It would help a lot and be a lot easier than cooking all my meat...that's why I'm asking.

Thank you

Many people on here use packaged foods on their gluten-free diet and do just fine !!

However, some people prefer a "whole foods" diet --that means NOTHING processed or from a package with added ingredients. Ever. (no chips, boo hoo)

Also, nothing "cured", nothing "prepared" at all...for example, luncheon meat.

The "all natural" thing on labels? All that means is nothing was "manufactured" in the ingredients they used --like yellow dye #5 on M and M's, or the orangy color in cheetos, for example--that stuff is not natural!

however... Carraggeenan and curing by salt or baking soda is PRESERVING the food, so it is NOT whole, pure food at all(that is NOT what's meant by a whole foods diet exactly)...but, without preservatives, that stuff would be rancid in a day or so.

"Whole foods" means...food in the natural state it grows (or in the case of meat---without processing or adding ingredients). A tomato. An apple. An avocado. Fresh Herbs. A plain burger, no fillers. A piece of fish. Whole grain brown rice. Beans. Plain,NOT canned with tomato sauce. Lettuce. It means foods with ONE ingredient, basically, fresh and simple.

So, ketchup, mayo, that kind of thing...just isn't "whole foods"...okay, a bit clearer?? Now...that said...

Hon, if you can't do this because it is not easy either money -wise, food prep-wise or just because it is too strict for you, go ahead and add some foods that are more convenient. Just be sure they are gluten-free. Have some gluten-free bread if you want. Eat the gluten-free deli.

The whole foods approach was suggested to you by some because they felt better on it OR because they have other food intolerances (like me) OR because it is simply the wisest way ANYONE should should eat! the more whole pure foods you give your gut, the faster it will heal.

Our bodies were designed to digest pure foods, not the crap we all grew up with.(and love to eat) and not beer or french fries or hot dogs. Again, I like those foods too, but they are NOT really good for people with gut issues. And the fillers in some things are REALLY not good for us.

For the sake of sanity, I would say go ahead and eat the hormel meats for now if you wish. Many people on here like them and say they are safe! That way, you are still gluten-free and not worrying about every morsel that goes in your mouth.

A stressed out stomach doesn't digest well at all. Your gut needs you to be calm.

[scottyg354]

Watch packaged/processed meat. I was on the Gluten Free diet for about 2 weeks (had to go back on due to upcoming testing). I had a salad with processed turkey on it and was sick as a dog for 2 days. Just a heads up.

Did you say all your bloodwork came back fine. I know my thyroid was a little wonky.

[zebaldwin]

Thank you Irish. I know, I really need to not be so stressed, it's just so hard. I feel like this is the most exact science there is...

So, Im a little confused. If a potato chip is made from a potato, sea salt, and oil (which are all completely natural) how is it processed? The only difference is someone elses hand put the ingredients together instead of mine. Just seems a little complicated

Scotty, Hormel meats (almost all of them) are gluten free...

And any bloodwork I have gotten for gluten or not has come back normal...another added stress

[IrishHeart]

seriously?

Okay, a potato from the ground is whole food.

Does a potato chip grow in the ground??

just teasing, but...really...a potato chip is cut up, COOKED in oil and salted...it is processed.

Fried and salted means it has been processed.

[ravenwoodglass]

Thank you Irish. I know, I really need to not be so stressed, it's just so hard. I feel like this is the most exact science there is...

So, Im a little confused. If a potato chip is made from a potato, sea salt, and oil (which are all completely natural) how is it processed? The only difference is someone elses hand put the ingredients together instead of mine. Just seems a little complicated

Scotty, Hormel meats (almost all of them) are gluten free...

And any bloodwork I have gotten for gluten or not has come back normal...another added stress

Yes it would be processed because it is not a whole food. But as Irish pointed out in an earlier post not all of us can do whole unprocessed food all the time. Just try to make the larger part of your diet as unprocessed as you can. Go for stuff with the fewest ingredients, for example those chips would be much better than say Cheetos or Doritos (which both have a high chance of CC anyway) If you are buying, for example applesauce, go for the one that has as ingredients- apples rather than the one that has- apples, high fructose corn syrup and flavors. If you buying a frozen or canned veggie go for the one that just has - peas, rather than peas in butter sauce etc. Just do the best you can and try not to stress out too much about it.

[mushroom]

Like I said, it's not the waiting I stress about, it's the not knowing if this is really the problem. I had negative bloodwork (was only one test though and I know people with neurological problems have more false negatives) but I just sit wondering how long I need to try this to know if it is truly the problem or not.

It is usually suggested to give the diet a good three-month trial before making up your mind whether or not it is working for you. With that said, neurological symptoms often take longer than GI symptoms. So although I know you are finding this hard to do, you must try to be more patient. I guess it is easier for we oldtimers who did not grow up in an instant gratification society

[zebaldwin]

Haha ya I get that...

But if I buy raw meat and cook it with garlic powder is it then processed? Seems a little weird.

But I do get the gist of it and plan to stick with it as best I can

seriously?

Okay, a potato from the ground is whole food.

Does a potato chip grow in the ground??

just teasing, but...really...a potato chip is cut up, COOKED in oil and salted...it is processed.

Fried and salted means it has been processed.

[mushroom]

Yes, but it is processed by you. It is the processing by others that will bite you every time

[zebaldwin]

I suppose you're right and I think I'm inpatient for a lot of reasons. I do plan on giving it the best try I can though. (even though 4 months sounds like eternity right now haha)

It is usually suggested to give the diet a good three-month trial before making up your mind whether or not it is working for you. With that said, neurological symptoms often take longer than GI symptoms. So although I know you are finding this hard to do, you must try to be more patient. I guess it is easier for we oldtimers who did not grow up in an instant gratification society

[Marz]

Hi there,

Just saw this long thread now, was wondering after going through it how you're doing? Hope the visit to the neurologist helped (Or at least ruled out other potential issues). Just wanted to also encourage you to continue on the diet, and I really hope you start seeing results soon. I imagine it must be hard without being able to see all the GIT symptoms disappearing within a few days, as it is for some of us.

As a suggestion for your food investigation, I would cut out soy for a few weeks for sure. That stuff is really highly processed and just plain nasty (my opinion, since it makes me sick as a dog ). Dairy may or may not be a problem, but I've heard (And seen on this forum) lots of people can handle small amounts of dairy but soy is not so good. (These are all more stomach issues however, so not sure how that applies to neurological problems). I *think* if you keep them out for a week or so, and then do a challenge eating *one* of those items (Dairy or soy) for a few days, several times a day (To really overload your system with the food group), you should see very quickly if it is a problem or not. Just use something very simple and unprocessed (Like plain milk or yoghurt), so you don't get mixed up with other additives/preservatives/contamination.

As another suggestion, leave the baked gluten-free stuff for a few months and see how you feel? I read about your cafeteria's gluten free muffin selection and alarm bells went off in my head Do they bake the muffins themselves in dedicated baking trays, separate from wheat items? Or source them from other gluten-aware bakeries? Do they bake wheat items as well? (Flour gets *everywhere!!*)

I can't tolerate even "gluten-free" baked food, I can only eat plainer recipes that I've baked myself in my gluten-free kitchen. The problem I think is the crazy ingredients they add to make the stuff "taste" better, and possibly also trace contamination in the flours (Sorghum and soy flour has been found to be more at risk for contamination). I can't eat plain "rice biscuits" made from a home-industry like bakery, because I see that they bake wheat biscuits as well, and after scratching myself silly and having stomach problems after eating them, assumed they probably don't follow a rigid enough procedure to keep the two apart.

I can happily eat processed "gluten-free" rice or corn pasta, and rice cakes (certain brands), but baked biscuits, muffins etc with many ingredients usually make me sick. Not sure if it is gluten or the "other" ingredients just yet

Going with a whole foods diet for a while can really "guarantee" a 100% gluten-free diet. The processing for items like chips isn't too bad (IF it's just potato chips and salt), but it depends whether those chips were processed in the same factory as other wheat products. I think Lays Stax is safe, just get a safe brand with 2 or 3 ingredients if you want to risk it.

All the best with the diet