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New To This, But Not *official*

Anonymousgurl

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Anonymousgurl Contributor
Anonymousgurl
Posted

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celiacgirls Apprentice
celiacgirls
Posted

It is not uncommon. None of us were officially dx'ed. Only my daughter has even had the blood tests and they were always negative. She is the only one who had GI symptoms. The rest of us have done Enterolab testing and gone gluten free from that. I think it is a good thing because it is not on our insurance records.

You don't have to have a doctor's permission to go gluten free.

happygirl Collaborator
happygirl
Posted

Welcome to the board! We are happy to have you here!!! :)

There are two very potential possibilities:

You have Celiac and for some reason, your bloodwork is not picking up on it. The biopsy can easily miss damage, because it is such a patch disease.

You could have non-Celiac gluten intolerance, which is a non autoimmune disorder, but many people have the exact same symptoms that a "true" Celiac does. Going gluten free helps them just like it helps a Celiac.

On this board, we really don't care if you have an official diagnosis or not....if you do better on a gluten free (and, other things!) diet, then this is the place to find support and information. You don't need a doctor's prescription to be gluten free....just remember that! Let us know what we can do to help!

Take care,

Laura

Jestgar Rising Star
Jestgar
Posted

I never had a medical diagnosis, just a dietary one.

Welcome to the board!

happygirl Collaborator
happygirl
Posted

Yeah, I should've added that there are plenty of people on here, like Jestgar, who don't have an official diagnosis. That doesn't make them "lesser" on this board, by any means....no one on here will question if you feel better gluten free. Dietary positive response is just as important!

Some have the gold standard (positive bloodwork AND biopsy), some have one, some were tested/negative, some were never tested, etc. etc. Some have doctors who supported their decision w/o a diagnosis, some don't, etc. We have all come from various path, but I guarantee you, there are plenty who have walked in similar shoes!

Laura

rutland Enthusiast
rutland
Posted

I havent been diagnosed officially either, but the gluten free diet healed me from some serious neurological symptoms like weakness and numbness. I couldnt wait to be diagnosed because my symptoms were so severe and I already had the suspicion that gluten was the problem. I tried to see the doctor but I had to wait a month and I was just ready to get on with it.

When it comes to healing, everyday counts.

Anonymousgurl Contributor
Anonymousgurl
Posted
  • Author

Thanks everyone, that comforts me. You're all so welcoming and willing to help! Thank you so much for your kindness. It's so hard to find people who understand...I mean, I'm REALLY sick...and people just don't understand why, or they think it's all in my head or I do this to myself (and lose all this weight on purpose). But ANYWAYS...thank you so much for understanding that gluten can make people seriously ill!

I was just wondering if anyone could reccomend me to any helpful websites...I know the basics of the diet but I would just love to find a website with ideas, stories, hints, tricks, trips...anything....

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GlutenWrangler Contributor
GlutenWrangler
Posted

This is by far the best site for celiacs on the internet. I have learned more here than anywhere else. If you need any information about anything at all, just ask. Chances are someone here knows. I would also suggest ClanThompson.com. They have lists of gluten-free food and a lot of other resources. I hope this helps.

-Brian

CarlaB Enthusiast
CarlaB
Posted

If you get better gluten-free/casein-free, then you have your answer and need to look no further. If you don't heal completely and still feel bad, your intolerance might be because of some other problem and you'll need to keep looking. Either way, it seems that you feel better off gluten ... food sensitivities can be a symptom of another problem. My gluten intolerance is most likely a result of my Lyme Disease. I felt a lot better when I first went gluten-free, but then stopped progressing in my healing. If you get completely better gluten-free, then you can assume that's your "only" problem ... if you don't, keep looking for whatever else may be causing the trouble.

Anonymousgurl Contributor
Anonymousgurl
Posted
  • Author
If you get better gluten-free/casein-free, then you have your answer and need to look no further. If you don't heal completely and still feel bad, your intolerance might be because of some other problem and you'll need to keep looking. Either way, it seems that you feel better off gluten ... food sensitivities can be a symptom of another problem. My gluten intolerance is most likely a result of my Lyme Disease. I felt a lot better when I first went gluten-free, but then stopped progressing in my healing. If you get completely better gluten-free, then you can assume that's your "only" problem ... if you don't, keep looking for whatever else may be causing the trouble.

That's ironic Carla, I happen to have a co-infection of lyme disease. I'm infected with a lot of parasites and infections. Are you being treated for lyme disease?

I was also wondering how people first felt when they just began to go gluten free? The first couple of days felt great...but then all of a sudden I'm having some trouble again. Did this happen to anyone? How did everyone feel in the beginning?

rutland Enthusiast
rutland
Posted

In the beginning of going gluten free. Your body will go through many changes. Youll get better, then feel a little worse later, and then feel better again, etc. etc. But their will be a point when you can feel a major difference and youll get there.

Think of it like this. You body is reacting to gluten as if it were a toxin. Now youve eliminating that toxin that has done a lot of damage. Now you are detoxing. Detoxing is a process and makes you feel pretty lousy for a time. To make things easier, consider purchasing a good digestive enzyme like Enymedica. This will help take some of the burden off your digestive system and help you to break down your food better. Also probiotics are good to help replace good bacteria in your gut. Also aloe vera juice is good for healing the lining of the intestines.

Hope this helps

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      Hidden Gluten in distilled vinegar

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    • Scott Adams
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      By Scott Adams · Posted

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    • Bebee
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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
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