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Discouraged

Wing

By Wing
in Coping with Celiac Disease

Recommended Posts

Wing Rookie
Wing
Posted

Hey everyone,

I joined the other day and my first post was me introducing myself as a new member from Canada. Thank you to everyone who replied. I've been gluten free for 6 days now. Day 3, 4, and 5 of me being gluten free made me feel like a brand new man...no symptoms. I thought that was it!!! So happy! Anyways, today, day 6 has been very bad. Symptoms back and multiple visits to the washroom. Do you think this means the first few days of relief was just mental or placebo or something? I'm feeling very discouraged and just wanted to get people's opinion. I will continue to stay gluten free and give it more time but I was just wondering...maybe I don't have a wheat allergy?? Oh man, what a let-down. Any advice? What do you think?

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kareng Grand Master
kareng
Posted

Oh, Honey! It takes more than a few days to heal. Give it some more time! Sometimes, something else isn't agreeing with you, too. Try to keep it simple for another week. Then you can see how you are feeling. You are eating differently then before. Maybe more fiber or less. Maybe more corn than usual. Your body needs time to adjust and heal. :)

Wing Rookie
Wing
Posted
  • Author

Thanks for the encouraging words. I'm sure you're right. I def will give it more time. I hope I can duplicate the good days and avoid the bad ones. I actually hope it is a wheat allergy and at least I will find some relief. Anyone else have some advice...still very new here.

thanks.

K8ling Enthusiast
K8ling
Posted

Oh my goodness! What Kareng said! It took me MONTHS to heal! It's going to take some time but you'll feel better eventually so long as you stick with it! Hang in there, it can be discouraging but it just takes time.

Wing Rookie
Wing
Posted
  • Author

Thanks ladies, that's reassuring. I hope you're right, and I will def give it more time. Please please please work!

sandiz Apprentice
sandiz
Posted

Sometimes it takes a little bit to get your diet under control. You may have been glutened and not even know it. Check your labels and cook fresh is the best advise I can give you.

psawyer Proficient
psawyer
Posted
My response in your other topic may be helpful.
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Wing Rookie
Wing
Posted
  • Author

Thank you.

shendler Rookie
shendler
Posted

If you didn't have gluten by accident could it be another food problem? I get a very upset stomach with dairy or corn.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Although I got relief from certain symptoms right away it was 6 months before I had ONE symptom free day and now I'm about 9 months out I feel pretty great. Celiac is an autoimmune disorder. There is devastation in your small intestines. It's not like an allergy where you just produce histamine and it goes away quickly. You've got a small army of construction workers in your intestines trying to patch up all that damage. You are going to go through MANY phases until you feel totally better.

Use the search function and look for threads on withdrawals so you know what to expect. Read and read and read old threads on here on the post diagnosis board and this one to see what others went through.

I went through so many crazy phases where my body got all wonky. I had a couple of weeks where I couldn't eat anything without feeling sick. Brain fog, dizzy spells from elctrolyte imbalances, all sorts of other food intolerances that mostly went away except soy, bowel movements up to 15 times per day for the first few weeks, the list goes on and on.

But now I am a different person! It has changed my life. Even my personality has changed. I'm much more mellow and relaxed, not anxious and stressed all the time. The neurological effects were far more pronounced than I realized until I went gluten free. I had constant sinus infections for years and I haven't had one since going gluten free.

Be patient my friend. You have a long road ahead of you, but it will be worth it in the end I PROMISE!

sandsurfgirl Collaborator
sandsurfgirl
Posted

Thanks for the encouraging words. I'm sure you're right. I def will give it more time. I hope I can duplicate the good days and avoid the bad ones. I actually hope it is a wheat allergy and at least I will find some relief. Anyone else have some advice...still very new here.

thanks.

I haven't read your other posts, but I want to make sure you know that celiac is not a wheat allergy. It's an autoimmune response to gluten which is wheat, barley and rye. Autoimmune is far more serious than allergy long term even though a severe allergic reaction can be life threatening. Your immune system is literally destroying your own intestines every time you eat gluten.

You must get ALL gluten out of your diet, not just wheat. Also, do not eat spelt because it is a cousin of wheat and it has gluten as does kamut.

Wing Rookie
Wing
Posted
  • Author

Thanks, yes I understand it's not an allergy. My Naturopath says I have a severe intolerence to gluten (not just wheat) and that my small bowel is very inflammed and producing allergy antibodies. As a result, I have horrible digestive symptoms (IBS type), and I have lost a little weight recently and have other external symptoms as well.

I will read old posts and see what the road is like. I'm glad to know that it will take some time and my relapse is normal.

GFinDC Veteran
GFinDC
Posted

It was a full 2 years before I got to feeling really mostly right a majority of the time. But I had additional food intolerances crop up over that time that did quite a number on me too. It was kind of like the first week or so was a honeymoon period and then the marriage really got going. Oops, the recovery process that is.

I'd been having strong symptoms for 12 or so years before going gluten-free so maybe that's why it took me a while to get better also. You will see a lot of recommendations around here to drop all processed foods to start with, and dairy and soy and go from there for a few months. Then you can try adding food groups back in slowly and see how your body reacts.

You also may find you have different symptoms from eating different foods. Like for me, if I eat dairy I can't sleep. If I eat soy, my joints get sore. If I drink a lot of gluten-free beer, I kind of stumble when I walk. :o Ok, that one's not a surprise. If I eat dead babies, everyone looks at me funny... and my sense of humor gets kinda bizarre. :blink: Kidding! But everyone has their own food reactions and they can vary greatly between people.

Recovery time and pattern is also variable of course. Changing your diet in a massive way can also create a new bacteria balance (after an initial imbalance) in your guts. There are actually zillions of bacteria in our intestines that help us digest foods. One site I read suggested that 50% of the fecal weight is dead bacteria. So there's lots of critters in there that are used to one pattern of food and suddenly they are not getting it, and then others start saying, hey I got something I can eat and go crazy. All that change results in a bacterial flora re-alignment of the battle lines and the war zone can get messy. That's why I like to suggest people reduce or eliminate any sugar from their diets when starting out until things can settle down. And dairy since lots of celiacs don't digest lactose (dairy) sugar very well. A dairy-free pro-biotic once in a while may help with that bacterial adjustment. If you are in the first 3 months you are just getting started IMHO. That's a tough time IMHO, but a great time to buckle down and learn all you can, with the hope of getting better as you go.

Anyway, these are my GFB (gluten fried brain) theories after 12 years minimum of self poisoning with gluten, so take 'em with a grain of salt. they are free though! :)

sandsurfgirl Collaborator
sandsurfgirl
Posted

Thanks, yes I understand it's not an allergy. My Naturopath says I have a severe intolerence to gluten (not just wheat) and that my small bowel is very inflammed and producing allergy antibodies. As a result, I have horrible digestive symptoms (IBS type), and I have lost a little weight recently and have other external symptoms as well.

I will read old posts and see what the road is like. I'm glad to know that it will take some time and my relapse is normal.

I would pretty much call that celiac disease. But I don't believe in gluten intolerance. In my opinion and the opinion of quite a few others on the board gluten intolerance is either baby celiac waiting to explode or the people just weren't diagnosed properly. It's splitting hairs. As long as you are doing the diet that's the most important, but it's just something to think about. I think that people think of intolerance as less serious than celiac so they might not comply with the diet.

Keep at it. Eat clean and maybe do a food journal to see if other things are causing you trouble. Our small intestines are a mess and don't digest things well for awhile.

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