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Newbie Here!
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3 posts in this topic

Hi everyone, I just wanted to post a simple intro topic.

I come to this site looking for advice on my rather recently known condition. I'm in my third year of college and was having a great summer until about the middle of August (2 weeks before college starts), which is when my life spiraled downhill fast. I was confined to bed with crippling abdominal pain, nausea, nosebleeds, and extreme exhaustion (I was sleeping 16 or so hours a day). The abdominal pain was so intense that it had me at various doctors getting ultrasounds, a CT scan, I was even in the ER. I was on strong painkillers which only touched the pain. There was a growing list of diagnoses that were being ruled out. Finally, my doctor looked at me and said: "you're constipated, take some Miralax and you're going to be fine".

I was not fine afterwards as the symptoms remained, I had come across celiac disease and gluten intolerance through web searches and said "well, I've got nothing to lose" so I cut out gluten. Within about a week I did a complete turn around of my symptoms. Plus, I felt even better than I did before I got sick. The persistant acne that I fought with everyday, I cursed at because it wouldn't go away not matter what I did, suddenly cleared. The red, bumpy, peeling rash I had on my hands for the last 3 years suddenly turned into baby-soft smooth skin. My brain felt clear. I had boundless energy. The bloating that I had for the past several years, which made me look pregnant and killed my self esteem, started to go away. I no longer felt like I was going to pass out every time I stood up. No more nosebleeds. No more waking up with extreme nausea. Abdominal pain gone as well. It was like a miracle had happened.

According to my doctor, "it [celiac disease/gluten intolerance] does not present itself this way". That combined with starting college, I've never been tested for celiac disease. However, I'm not an idiot and can read what's being put in front of me. I'm going to a different doctor if I go back during break, by the way. That one was just filling in temporarily as mine was on vacation - I just needed to see someone before college started.

Anyways, story over. Now I'm here to find out some ways to cope with the obvious intolerance to gluten. I've also found myself in a tough situation. It seems that xanthan gum causes problems similar to gluten (basically feel like I'm going to pass out when I eat the stuff). I'm also finding re-emerging symptoms (rash, depression, fatigue, cloudy mind, nosebleeds) even though I'm eating "gluten free" foods. So I think I must be intolerant to something in those supposed "gluten free" products. I'll poke around the forums because I definitely have a lot I want to learn. I'm want to learn what other intolerances tag along with gluten (I was actually diagnosed lactose intolerant in 2007, so that's a known one already). I want to learn which tests to get done too, so when I go home on break I might be able to schedule testing.

Okay, I will end this post now. Sorry, this is so long, I always tend to write too much!

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Nope, not too long at all! Welcome. What a beautiful story of figuring it out all on your own! I just want to say that your intolerance to gluten can become more sensitive and what you are experiencing is quite commonly reported here. That feeling wonderful is followed by feeling uggy again. Sometimes it is other intolerances and sometimes it is your body letting you know you have encountered CC, otherwise known as cross-contamination. Traces of gluten are difficult to eliminate but your body will let you know when you don't. Xanthan gum bothers some who are intolerant of corn. It can also just be something you are intolerant to even if you can eat corn. You will learn a lot by reading and your body will tell the rest of the story by trial and error. I'm so happy you didn't have to go to Dr.'s for years with them telling you that this is not how Celiac presents. This is very much how Celiac presents! And you figured it out! I am very happy for you and I hope you can find a way to eat safely at college!

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Kudos to you for removing gluten from your lifestyle! You could try Guar Gum which is not made from corn.. Many of us have allergies to other foods ie: nightshades, soy...

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