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I'm An Enigma To Myself!

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Hi, new girl here! Have been reading a lot of posts, and finally decided to share my own story/situation...

I'm a 27-year-old female with a pretty long and mostly unexplained GI history. As a toddler, I had a functional megacolon (I'm still not entirely sure what that is but it has something to do with chronic constipation and the colon enlarging. My mom says I would hold my poop in while I was potty training and then I'd get constipated). I was hospitalized when I was three for some GI-related thing (not sure if it was constipation or something else but it had something to do with stool!) They tested me for cystic fibrosis (negative). Throughout elementary school, I would go to the school nurse multiple times a week with stomach aches. In middle school, I was diagnosed with lactose intolerance, asthma, and multiple allergies, including milk and corn (which I've since outgrown... supposedly). I continued to have frequent stomach aches throughout high school and college and was told I had IBS. I wasn't exactly good at avoiding dairy products even though they continued to cause me a lot of gas, bloating, discomfort and diarrhea.

About three years ago, I started eating a raw vegan diet. Within days I felt 110% better. My body felt great, I don't recall any major stomach aches, I was no longer constipated, and I had a ton of energy, even in the mornings (I usually have to DRAG myself out of bed). However, a few months into the diet, I had two episodes (about a week apart) of severe vomiting and diarrhea. I had an endoscopy (third one in my life) and a colonscopy. I was diagnosed with gastritis. I was worked up for Crohn's and colitis (which does run in my family) and everything was ruled out, so again I was told I had IBS. I was also convinced to return to my regular diet, starting with a lot of white rice to plug me back up.

Not long after that, I developed out of no where a severe, unbearable anal itching. It was looked at by my GI doc, my gyno, my dermatologist; it was biopsied (negative); it wasn't hemorrhoids; I tried every cream, ointment, powder that was prescribed for me. NOTHING WORKED. In fact, most of the medications only made it worse. Even my psychiatrist got involved in this one and put me on Neurontin, in case it was some kind of neuropathic thing. But I was literally lying around with an ice pack between my legs to numb myself. Three years later, I am STILL having this problem. It causes me so much distress, sometimes it actually brings me to tears. The only things I've found that relieve the itch (temporarily of course) are Analpram and Lidocaine cream.

I continue to have stomach aches, almost every time I eat. I am always bloated. Since I was a little girl, I've always had skinny arms and legs, and a little pot belly. I am super gassy, ALWAYS. I've gone for two abdominal ultrasounds (one was just this week) and BOTH times the technician commented on how much gas I had in my abdomen. This time she couldn't even see my pancreas, which was the main reason I went for the test in the first place (my pancreatic enzymes are high).

Other history includes:

-Anemia (not currently)

-Esophagitis

-Acid reflux

-Fatigue

-Headaches

-Depression/anxiety (was hospitalized during college)

I am currently on Day 9 of a gluten-free diet, as suggested by my primary doctor. He recently ordered 30+ blood tests for me, but he didn't include a celiac panel, probably because he was focused on figuring out why I had been so exhausted lately and we weren't really considering my GI issues. Now I wish I had gotten tested then, because now that I'm gluten-free I know the tests won't necessarily be accurate. I did order the stool test from EnteroLab. I like having definitive answers to things and I'm actually afraid that all of this will come back negative and it will turn out I am just a gassy, bloated girl with a vague case of IBS + other random and seemingly unrelated symptoms. I have a tendency to talk myself into thinking I have all the symptoms of something and then having the tests come back totally negative. Maybe I'm just a hypochondriac after all. I don't know anymore. I just want to feel better.

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how do you feel now being gluten-free for 9 dys? did you stop the raw veg diet?

I did research on anal itching/burning for a family member recently & one idea I came across was to apply witch hazel to the tissue when cleaning up. Not sure if it works but it couldn't do any more harm could it?

I also read it may be yeast related and perhaps miconozole will help.

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Welcome to the board. Hopefully you are starting to feel a bit better although it can take a while. It is too bad the doctor didn't do a celiac panel before you went gluten free but the Enterolab tests may give you some answers gluten wise even though they don't technically diagnose celiac. I also had that horrible itch and it is torture. It isn't like you can just scratch it. :( I have DH so I would get that itchy rash on my skin in addition to the itchy exit path. I still get that annoying itch when I get glutened but other than that it is gone. Hopefully that will be the case for you.

Even though your doctor didn't test for celiac there are anemias and things like elevated liver enzymes and vitamin deficiencies that can point to it. Sublingual B12 may help a bit with energy while you are healing and many of us need extra supplementation above multi levels until we are healed fully. I hope you are feeling better really soon.

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how do you feel now being gluten-free for 9 dys? did you stop the raw veg diet?

I did research on anal itching/burning for a family member recently & one idea I came across was to apply witch hazel to the tissue when cleaning up. Not sure if it works but it couldn't do any more harm could it?

I also read it may be yeast related and perhaps miconozole will help.

I haven't done the raw veg diet since I got sick that summer three years ago. I feel a little better since going gluten-free. I haven't had any major stomach aches or diarrhea since I started. Still really gassy and bloated though and still having acid reflux but that's usually when I eat chocolate. The thing is I also gave up cheese the same day I gave up gluten, because my cholesterol is high. So now I don't know if it was the cheese or the gluten that was causing all my problems. I haven't given up all dairy products though.

I tried miconazole powder and I also tried taking diflucan. The powder only helped very temporarily and I think only because it dried the area out. :\

Thanks for replying!

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Welcome to the board. Hopefully you are starting to feel a bit better although it can take a while. It is too bad the doctor didn't do a celiac panel before you went gluten free but the Enterolab tests may give you some answers gluten wise even though they don't technically diagnose celiac. I also had that horrible itch and it is torture. It isn't like you can just scratch it. :( I have DH so I would get that itchy rash on my skin in addition to the itchy exit path. I still get that annoying itch when I get glutened but other than that it is gone. Hopefully that will be the case for you.

Even though your doctor didn't test for celiac there are anemias and things like elevated liver enzymes and vitamin deficiencies that can point to it. Sublingual B12 may help a bit with energy while you are healing and many of us need extra supplementation above multi levels until we are healed fully. I hope you are feeling better really soon.

Thanks for the reply. :) I am starting to feel a little better since going gluten-free. I haven't had any horrible stomach aches or diarrhea, just continue to be gassy and bloated. I will be AMAZED if this cures my itch. That will be more than enough of a reason for me to never eat gluten again!

My latest blood work showed no anemia, normal liver enzymes, B12 was fine, folate was fine. Only my lipase was high.

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The anal itch is one of my glutened symptoms. Arrhhh, it drives me up the wall! I keep Tucks pads on hand for when that happens.

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Tucks is nothing but a pad soaked in witch hazel. A bottle of witch hazel is around $2. Tucks is way more expensive. Do try the witch hazel.

miconozole cream or ointment might be better. U can get it OTC or get a prescription strength from yr Dr.

Since the raw vegs worked for you maybe you can add them to yr gluten-free diet.

Im sure you'll continue to get better.

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