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cheeka

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cheeka Newbie
cheeka
Posted

hey my name is rachel and im 14, i've been gluten free for about 9 months and i still dont feel that great! i even changed all my products to stuff thats gluten free (though im not positive about some of it because it changes so much) does any one know of products that are definatly gluten free? also i just wish i would feel better! i dont care what i have to do at this point! should i go off dairy and eggs? my mom has it to and we are both lost as to what we should so, weve been trying this diet were you dont eat sugar or simple carbs (as well as not eating gluten) but it jsut made everything worse! ahh... i anyone has any ideas i would love to hear them!

thanx,

rachel

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

The best way to know you're gluten-free when you still don't feel well is to eat natural things. Stick to fresh meats (if you eat animals), fruits, nuts, and vegetables. If you think you have dairy and egg issues then cut them out, too. That way you know you're gluten-free. You also need to make sure your shampoo and such is gluten-free. It takes awhile to feel better, Rachel.

flagbabyds Collaborator
flagbabyds
Posted

I would say just have plain foods that don't have any preservatives or additives, yes some cleiacs do feel better when they go on lactose, but i don't know about eggs, never heard that before. For products you can look on this website under the site index and look at the mainstream products listing. that should give you a lot of good mainstream products once you start feeling better.

You can e-mail me, i'm 15 (almost 16~!~) and i have been celiac for 14 years so yeah. my e-mail is celiacmolly08@mac.com

cheeka Newbie
cheeka
Posted
  • Author
I would say just have plain foods that don't have any preservatives or additives, yes some cleiacs do feel better when they go on lactose, but i don't know about eggs, never heard that before. For products you can look on this website under the site index and look at the mainstream products listing. that should give you a lot of good mainstream products once you start feeling better.

You can e-mail me, i'm 15 (almost 16~!~) and i have been celiac for 14 years so yeah. my e-mail is celiacmolly08@mac.com

thanks! wow thats a long time! so do you feel normal all the time? or do you have symptoms?

-rachel

flagbabyds Collaborator
flagbabyds
Posted

I get sick occassionally when i get accidental gluten posioning, but over all i have been well for my whole life, i feel lucky to be diagnosed when i was little because i don't remember being sick, and dont' remember when gluten tastes like.

Send me an e-mail or IM me missmolly3001

I love o talk to other celiacs.

~molly

ErraticBinxie Explorer
ErraticBinxie
Posted

I have been gluten-free for 10 years and when I started college this year, I felt really crappy. I tried everything and I finally felt better when I went off of dairy.

Sometimes a reaction (ie you feeling crappy) are set off by stress. Or in your case, you are still new to the diet and your system is still trying to heal. Be really gentle on yourself. Even if it means going off meat and raw veggies (lettuce is really rough on me), it is worth it in the long run.

When i'm feeling icky, the best things are bananas, EnerG Wheat-free crackers and lemon-lime gatorade (to prevent dehydration.

Hope you feel better!

BRUMI1968 Collaborator
BRUMI1968
Posted

I'm recently diagnosed as well. My nutritionist suggested no eggs, dairy, corn, peanuts,or citris for a few weeks to settle my system down. I'm also going to get tested for other intolerances so I can get on with being healthy. I've actually felt slightly worse digestively speaking since I found out, but that is starting to subside. Right away though, I stopped getting canker sores and itching and being so tired I could hardly go the day without two naps.

So hang in there. Your intestinal health needs to be rebuilt - you need good bacteria in there (probiotics), and you might need some temporary help in digesting stuff (prebiotics/enzymes). Once your system gets back on track, you should feel better.

Good luck and welcome.

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cheeka Newbie
cheeka
Posted
  • Author
I'm recently diagnosed as well. My nutritionist suggested no eggs, dairy, corn, peanuts,or citris for a few weeks to settle my system down. I'm also going to get tested for other intolerances so I can get on with being healthy. I've actually felt slightly worse digestively speaking since I found out, but that is starting to subside. Right away though, I stopped getting canker sores and itching and being so tired I could hardly go the day without two naps.

So hang in there. Your intestinal health needs to be rebuilt - you need good bacteria in there (probiotics), and you might need some temporary help in digesting stuff (prebiotics/enzymes). Once your system gets back on track, you should feel better.

Good luck and welcome.

thank you so much! it really help to hear from other people! ya a lot of my symptoms have gone away too! the ehaustion (sp) you were talking about was one of them! and i got tested for lots of other things i just dont have the results left! really, does going of citrus help you?

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

It helped me to stop eating things like tomoatoes, at first. I just stuck to a plain diet and worked back to adding things in.

BRUMI1968 Collaborator
BRUMI1968
Posted
thank you so much! it really help to hear from other people! ya a lot of my symptoms have gone away too! the ehaustion (sp) you were talking about was one of them! and i got tested for lots of other things i just dont have the results left! really, does going of citrus help you?

I've never eaten much citrus anyway, being very sensitive to "sour" things. I do eat lemon and lime, like in lemon/mint/cilantro rice and guacamole...but I never touch oranges and the like. It was just something the nutritionist said.

I've also found that things that used to might upset my stomach, don't anymore. I have to remember that my stomach aches were likely caused by my small intestine - so now I focus on eating those things that promote intestinal health. Granted, some things always have and always will cause each of us to have tender tummies...those things should be avoided. I just worry if someone were to only be eating "gentle" foods, they might not be getting enough fiber and whatnot. LIke a potato - not a very nutrient dense food really. I like the following website for finding really good for you food - and the recipes are great too. Good luck!

Open Original Shared Link

-Sherri

lightningfoot speakin words Contributor
lightningfoot speakin words
Posted

when I feel sick the thing that helps me the mostest is exercising. Does anyone else do that?

cheeka Newbie
cheeka
Posted
  • Author

that helps me too! it makes me feel more alive, expecially when im outside!

-rachel (cheeka)

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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      High DGP-A with normal IGA

      By rei.b · Posted

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