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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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