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My Story


ameslaw84

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ameslaw84 Newbie

I haven't been diagnosed yet, but am in the process and will be going gluten free no matter what the results say. This will be long, but I wanted to share it.

This started about 2009. I was a roughly normal girl in my 20s, I do have a rare bone disorder that limits me to a wheelchair, but I was able to take care of my self all day while my husband worked. In about May of 2009 I started falling asleep in my chair everyday around 1 or 2 pm. This was extremely unlike me as I was always the one to get up at 5am and be awake till midnight. I also started not being able to do as much for myself, my body was tight and I just wasn't able to move good.

Later that year I came down with panic attacks. They got so severe that I could not leave the house. I started on medicine to try and get better, and it did help. During this time I also took naps everyday because my husband was home (he got laid off) and was able to help me into bed. I attributed it to the panic attacks tiring me out.

About the time I started the medicine I also started having bad gastro issues. I would be fine all day, then have diarrhea for a few hours. I would take something for it, but my stomach would stop working basically and I would have severe pain and throwing up. I eventually went to the doctor about the anxiety still being there, and was diagnosed with severe Vit D deficiency.

Fast forward to last year. We moved to a new state. I was still having gastro issues and sleep problems, but a new problem started, a severe itchy rash that no one could figure out. The first doctor thought it was staph, so I was on antibiotics for a while. I also was tested for a lot of auto immune and was eventually diagnosed with hypoglycemia. I had a 6 hour glucose test and my glucose went from about 70 to 156 in 30 minutes, then at the end of it dropped suddenly again. I was put on a low card diet (which I only did for a few weeks). During the low carb diet I felt great. I was able to stay away all day and was sleeping great.

My rash went away, and now came back. I am again always tired. I can wake up at 11:00am and want to be back in bed by 12. It is horrible. I also am constantly getting sick, either throwing up or having diarrhea. I went to the doctor, he has no idea what the rash is and has referred me to a gastro.

I found this site and posted on the DH board, because when I saw the rashes there it was exactly like mine. I have since called my doctor and asked if he can do the celiac panel himself so I don't have to wait. I am ready to go off gluten.

Anyway, I wanted to give my story and say hi to everyone.


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Hello...and welcome! Your symptoms sure seem to fit? I hope testing gives you answers. I want you to be aware though, that 20-30% of us test normal in our bloodwork. So..if you are tested and get a negative for Celiac..it would be good for you to go strictly gluten-free for at least 3 months to see if you note improvement.

There are many posts here about how to eat strictly gluten-free and avoid cross contamination.

Good luck! I hope you get the answers that help you sort all of this out. It's no good feeling so miserable.

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    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
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      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
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      Paracetamol, aka, acetaminophen (Tylenol) just does not do anything for me as far as pain relief. It does help with fevers, though.
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