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So Frustrated Not Better Yet

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I'm so frustrated. In the last two years since going gluten-free I've seemed almost well several times, then more food intolerances crop up and I'm not better.  I thought I was on the right path a week ago, and had figured out the missing piece of the puzzle, then the same thing happens again. I start to feel sick and realize that my recurring C problem has returned again and I've developed an impaction of sorts that I can't get to clear no matter what I do. I already had chronic C tendencies before this gluten thing started, but it was completely manageable.

 

My GI has helped me in the past with this problem. He takes an x-ray then gives me a colonoscopy prep solution to drink and that works. I've done that twice before.

 

I called my GI on Monday and I still haven't gotten a response. I tried whatever I could to resolve the problem but haven't improved so I left a message today (Thursday!)on the voice mail (they don't take calls after 4:30 I found out today) to try to get in to see him before the long weekend. I'm afraid of being really sick for the next four days until the next business day. Trying not to stress about it.

 

I'm so tired of doctors not understanding what is wrong. I'd like to find a GI who understands food intolerances and how they affect the gut, but I haven't yet. Mine doesn't understand why I still have problems. He's really nice though and he helps me out of a tight spot when I need it so I keep seeing him, each time thinking I won't need to go back.

 

Except now there seems to be a new front office staff that's not at all sympathetic and it feels like there's a firewall between me and my doctor. He's so caring he returns phone calls until as late as 9 pm at times. I hope I'm able to get through to him this time.

 

I've had it with this whole thing right now and I'm in tears. I just want to get better. It's just one of those times I feel worn down by this long process.

 

I could really use some input from someone who has eventually recovered… or from anyone who can understand :(

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I'm so sorry. You have put so much effort into getting well and I know that it's frustrating when things don't work as planned. And it's so hard when going gluten free doesn't take care of your health issues. I know for me, I had additional issues besides gluten, and it's been a somewhat challenging road to wellness.

 

You have certainly done your part to get well! I don't see how you could be any more vigilant on your diet than you already are.

 

Do you think that your gluten issues caused the other intolerances?

 

Here's hoping for better health and a break through somewhere. 

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Thank you so much. I have been really vigilant. Yes I think the gluten caused leaky gut, which has made me so sensitive to other things.

 

Uh-oh. I started thinking after I wrote this original post about anything I've added to my diet lately. Then I just read the info under your signature, BlessedM! This is like divine intervention. I felt so deprived after losing more foods lately and I had nothing left that was a comfort food. So, I started having sugar, then maple syrup (more sugar)!

 

Sugar! You say a good chunk of your remaining symptoms were caused by it, until you severely limited sugar intake. I was worried about having sugar but found it was impossible to go without some kind of comfort food. I tried to ignore the cravings and I found it seems impossible not to have some kind of comfort food. I felt like I was losing my mind. I have no vices. Not one thing left. No grains, dairy, chocolate, alcohol, soda, coffee. Nothing. It's really hard!

 

Omg... I see a pattern here. Every time I start to get better I think I can have sugar again. It was always my weakness. I have to think of sugar like it's gluten... like it's poison. Aaaaaaaaaah!!! Ugh, I can do this, I can, I can, I can.

 

Sugar gave you allergy-like symptoms? Are you allergic to it, or do other foods give you similar symptoms?

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About 7 months ago, after suffering through 2 bouts of bronchitis back to back, catching nearly every bug that went around, and having debilitating environmental allergies (year around) that were only getting worse year after year, and reading lots of material on the subject, I hesitatingly decided to go sugar free. (including honey, maple syrup, etc.)

Frankly, it sounded really difficult and unpleasant, but with my deteriorating health, I would've done anything. Surprisingly, giving up sugar was very easy. I soon ceased to crave it so much. Other things started to happen, my chronic sinus problems started to go away. I stopped catching colds every other week. I also took some candida cleansing herbs as well. It is the height of allergy season right now and I'm breathing much, much better. No days spent constantly sick from the pollen floating around.

I now use some sweeteners very, very sparingly. I find that I have no trouble knowing when to quit and it's very easy to limit them. I try to save added sugar for mostly minor ingredients in items that I want to keep around, like brown rice syrup in my vegan mayonnaise or a little honey in my gluten free muesli, etc.

 

Essentially going without sugar reprogrammed my taste buds so that desserts sound too sweet. I don't really keep much in the way of sweeteners in the house. I did buy some date "sugar" (it's actually just powdered dried dates) and I have a little bit of raw honey left, but I don't use that very often. Date paste also works well in things. I use lots of fresh fruits, my kids and I love raspberries, strawberries, blueberries, watermelon, etc.

 

My idea of a splurge these days is to secretly buy a package of organic raspberries and eat the whole thing in one sitting without sharing it! LOL!  :P 

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I think sugar suppresses everyone's immune system.

 

Ok, thank you, you've inspired me! Sugar has to be why I'm so sick right now, and I've been through way too much to allow anything to keep me down. It's not worth it, and sugar is terrible for us, that's not anything new. I'll be healthier all the way around by giving it up. If you can do it, I can do it too!

 

I hope you're feeling pretty good at this point. If you are still having problems I can't help but wonder about histamine. I recently learned that I have a histamine intolerance, and I think it's why I first developed food intolerances almost twenty years ago. Now I know why the symptoms were mostly sinus issues, which I never understood before. You probably know all about histamine levels in foods and all that at this point. If not and you're interested I can give you a link or two to look at.

 

You've been such a help to me at just the right time, thanks so much :)

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I'm feeling much, much, much better!

 

Before, I was sick basically year around with debilitating sinus problems to the point where functioning through daily life was often difficult and now I enjoy lots of sunny days outdoors with the kids in the pollen filled spring air. I also cleaned up a dirty room the other day without sneezing which felt like a miracle because I'm allergic (or was allergic) to dust mites.

 

I don't know much about histamines in food, but I'd love to take a look at it, if you have a link to share. 

 

I hope that you feel better soon!

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Thank you!

 

I'm so glad you are feeling better - it's really inspiring and I'm so happy for you too!

 

It sounds like you have it under control, so it doesn't sound like you have to worry about this, but this info may be helpful to you if you ever do have trouble with seasonal allergies or something. It's something I had never heard of, and I don't think MD's know much about it.

 

This links explains what it is:

http://chriskresser.com/headaches-hives-and-heartburn-could-histamine-be-the-cause

 

And this link is a more complete food list showing the amounts of histamine in each food:

http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT%28EN%29.pdf

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I am trying to drop sugar.  All fructose, adding low Fodmaps, but I think the real culprit to my not getting better is sugar.  Food testing has onions and garlic as safe, but sugars off the chart.  Good luck, I feel your pain, I have been going through it too.  Did everything right, yet still not better, and in some cases worse (my esophagus).  We will figure it out.  I am not giving up. :rolleyes:  

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I see you guys here giving sugar a bad rap.  I think you mean High Fructose Corn Syrup and other sugary concoctions may be troubling you.  Everything in moderation.  If I happen to eat a piece of cake with frosting, my stomach will complain and I will get C.  For me, that does not mean I am intolerant to it, it just means I ate to much at one time.  I eat a very low sugar diet anyway because I have cancer but I don't avoid it completely.  Like one of you said, if you don't eat sweets for a length of time you won't crave sweets any more.

 

Carry on with the sugar bashing... :P

 

Colleen

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I'm not allergic or intolerant to it, small amounts don't really bother me. (though I do prefer to avoid HFCS as completely as I can)

 

Like you, I just try to stick to a very low sugar diet overall (staying within the government recommendations of 6-9 tsp per day), because I feel so much better that way.

 

I'm sorry to hear about your cancer. My MIL has cancer and she does a very low sugar diet as well. 

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My downfall is Snickers Bars.  In my defense, I do make one bar last 3 days  :D  I remember as a kid I would have cinnamon and sugar toast all the time.  It was total yummies then but now it would make me Urp.... :ph34r:

 

Thank you for your kind words and I wish you and your MIL and your family well also.

 

Colleen

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My problem is I can't do sugar in moderation. A candy bar lasting 3 days? That's impressive. If I could do anything like that it would be a different story. Of course I haven't touched chocolate in two years anyway, and isn't something I've thought about in a long time, nor do I want to...

 

Everyone has foods they have do stay away from because they can't help overdoing it. Sugar is one of those for me.

 

I don't think it's a sugar intolerance. It's the inflammation sugar causes. It doesn't matter what kind it is. Even fruit juice has the same amount of sugar as a coke. To your body sugar is sugar no matter what kind it is. Small amounts of it added to food as a condiment isn't a problem. Or treats in moderation isn't bad. Everyone knows what they can or cannot tolerate.

 

Still, I believe what I've read about inflammation being one of the causes of all disease. Sugar causes inflammation more than anything. It doesn't help anyone suffering from an illness of any kind.

 

Yes, everyone has to live a little. I'm going to live without sugar because it makes me sick. There are plenty of other things to enjoy. It's a personal choice everyone has to make for themselves.

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A lot of things that are happening to me boil down to inflammation, after you get past the damage gluten did, that is where my sugar bashing came from, my husband, wants me low fodmap, but I think it is sugar, and yes, I am addicted, sugar and chocolate.

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I think after a lifetime of sugar propaganda it could use a little "bashing". I understand how you feel completely. It's really hard to think of all the things we've considered a normal part of enjoying life in a different way now.

 

Some say that sugar can be the cause of leaky gut which can then lead to a gluten intolerance... the chicken and the egg.

 

I ate a lot of sugar my whole life, I always had a sweet tooth. I gave it up for years at a time before to lose weight and it worked. That was all I had to do and the weight came off. I used to have acid reflux and it went away after losing weight just like they say it would.

 

It is very addictive but it's true that the cravings go away when you give it up, and the more you have the more you want. I got to the point where I could be around it and not even want it while others ate it. That was amazing to accomplish for someone like me.

 

We're juggling a lot of challenging things at once. Just keep on trying and ever don't give up :)

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The sugar cravings definitely can go away. I know that my taste buds have changed a lot since I went down this road. 

 

I totally believe in low sugar for weight loss! My MIL went on a sensible diet with very few sweeteners at all, low fat and virtually no processed foods and also at her doctor's advice, she went down to 2 meals a day.

 

She started out at 267 lbs and in 8 months is down to 189 lbs, a 78 lb loss! 

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The sugar cravings definitely can go away. I know that my taste buds have changed a lot since I went down this road.

 

I'll be glad when I get to that stage. Not there yet. Today I'm at the "what made me think I could do this?" stage. I know that will pass. It's a loss to give something up and there's a grieving process. When I start to feel better it will pay off, and I will have made an investment that will keep me going, in the same way that it get's easier to keep on a plan to lose weight when you see those pounds start to come off.

 

As I heal I can look forward to adding more foods into my diet that will be a lot more satisfying than sugar ever was. This is the second day sugar-free. It will be exiting when I can say it's been a whole week! I'm actually thinking of going to by some gold star stickers so I can put one on each sugar-free food diary page!

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Just wanted to comment on the original info in my post about solving my C problem. I did get the nasty but effective stuff from my DR. that I'll be drinking tomorrow. It won't be pleasant but it should work. I'll be on clear liquids for the day tomorrow, and on soft foods for three days after that.

 

It's scary to feel afraid something will get stuck inside my colon and not come out. I've been here several times before and it hasn't happened yet, so I guess I'll be ok this time too. I haven't died yet. I have felt sick enough a few times to think I might, (or almost wish I would) when I feel that bad. I have improved a lot though since the beginning when I was throwing up. That almost never happens now.

 

Now that it seems as though I have my food intolerances figured out (fingers crossed) I'm hoping this will be a fresh start and I won't need to drink this stuff again. Whatever happens it will be ok. I'll get through it like I always do.

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