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decagon

Newbie With Questions. (Pour A Cup Of Coffee, This Is Looong!)

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So I guess starting from the beginning will explain a lot.

I believe that I've had this my entire life. As a kid, I remember eating pizza and then sitting on the toilet in the middle of the night with horrible stomach cramps. I don't think I had any normal bowel movements; I'd either go a few days with nothing or I'd be running every 1/2 hour. THIS became normal for me. I didn't even think twice that something might be wrong, I just thought it was the way my stomach worked. I had frequent migraine. I had two unexplained grand mal seizures that MRI's and EEG couldn't give any answers for. I was moody, unmotivated and unable to focus, so they diagnosed me with bipolar disorder. My weight fluxuated without changing eating habits or activities. I'd be normal weight for several months to a year and then gain weight and cycle over again. I've always been uncomfortably bloated.

When I got pregnant with my daughter 6 years ago, I noticed a blister-ish bump on my upper arm that had dry skin around it with a crusted ring bordering the outside. I ignored it for a long time. Then I thought it was ringworm. Eventually, it slowly went away, but when it was gone, several cropped up on my back. It itched, it burned, I couldn't lay on my back. I went to the doctor, who took a skin scrape and told me it was fungal. She prescribed Lamisil. I was on it for 6 months with no change. In fact, it seemed to get worse. I went back to another doctor, this time to tell her about my back and that I'd started getting weird pimple-like sores on my face. She took another skin scrape and found that it wasn't fungal after, but she didn't really know what it was. It wasn't eczema or psoriosis, and she couldn't figure out what the weird bump in the middle of the patches was. But she did know that my face had Rosacea, so she prescribed a steroid cream for my back and a gel for my face. Nothing worked.

Sometime down the road, I went back to the doctor because my hands and feet were getting tingly. The doctor ordered an MRI, but it was normal. At this point I'm starting to feel crazy. I know something is wrong, but I'm getting no answers and no help. I stumbled upon an article in some health magazine about gluten. I wasn't paying much attention because I scoffed at the idea of giving up bread, but then I read about Dermatitis Herpetiformis and the description clicked. I googled pictures, but it didn't really look exactly like what I had, but thought I had nothing to lose by doing an elimination diet. I wasn't going to seek medical advice this time; I was pretty fed up. Three weeks into a gluten-free diet, I had no more Rosacea, my back was on it's way to being smooth and free of dry itchy patches (although still discolored patches where the rash was), I was no longer uncomfortably bloated after eating, my hands stopped tingling and most surprising of all, my energy level went through the roof. I wasn't swinging between depressed and ready to fly into a rage anymore.

Three months in and it was February and I realized I'd not had a single sinus infection all year, and I usually get no fewer than 2 per winter.

I have been having a bit of trouble with reading labels of things I assume don't have gluten in it. For instance, it was cemented for me that I had an intolerance when I had sushi after going gluten-free. I was bloated and miserable. My husband thought I was a hypercondriac because I was bemoaning that I must have a soy intolerance as well, only to find out that soy has wheat in it! When I didn't read the label on our taco seasoning and had a break out, I figured it was time to see the doctor about what to do if I accidentally ingest gluten.

After telling him everything I just told you, he was not completely convince. He said it sounded like a strong possibility, but he would never encourage someone to eliminate gluten without a diagnosis. At this point, I'd been off gluten for 6 months, so of course my blood test came back negative. So I was scheduled for an upper endoscopy and I tried so hard to eat bread but every time I got sick. I had maybe a total of 2 sandwiches the week before my procedure. It came back normal, except for some "irritation" on my stomach. I went for a second opinion from a different doctor, this time completely broken out on my back. The second doctor also wanted a blood test. He said that the wheal in the middle of my patches looked suspicious, but because it wasn't on my elbows he didn't suspect Celiac. The blood test came back negative.

So, with all this info, my question is, where do I go from here? I live in a small town where while the doctors are good, they like to follow symptoms to the letter when diagnosing. Why do my tests keep coming back negative? Is it because I truly don't have an intolerance or because I haven't eaten enough gluten in the past 6 months to make it show? Should I continue on a gluten-free diet since my symptoms clear up? Does this sound like Celiac or just an intolerance. Whew! If you made it this far, I have some virtual gluten-free cupcakes for you.

Thanks for all the replies,

S

Sorry for any spelling errors or disjointedness. I don't have time to go back and proofread right now!

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Hun, you need to eat gluten for it to show up :(

You sound a lot like me (eatting pizza then spending some time in the bathroom afterword etc).

I understand the skin thing mine isn't on my legs (because according to my GI most of the time its there <_< uhuh suuuure), its on my arms and likee you it has been clearing up after going gluten free :ph34r:

Bah, its tough but hang in there

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I had "just" poured a cup of Joe, then sat down with my laptop and saw your post. Those cupcakes would be great right now!

I have no advise for you as far as Celiacs symptoms, because mine is a wheat allergy. However, I know it is true that your tests will come back negeative because you've been without wheat for so long. That does not mean you do not have it though. Many people on this board figured out they have a problem with wheat and do not have a diagnoses/positive blood tests.

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Can you just stay gluten free and let the testing thing go?

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You can't get positive bloodwork without eating a full gluten diet (3-4 slices of bread a day) for two months. It sounds like that's not an option which means you are doing the right thing staying gluten-free. With the rash, GI problems, and mental problems it sure sounds like celiac to me.

If it's easy to get the rash to come up without making yourself too sick, a dermatologist can do a skin biopsy. They have to biopsy next to the lesion, not right on it. Of course DH can show up on places other than elbows... dumb doctors.

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I would just stick with eating gluten free. There is no sense in eating gluten just to confirm your aren't insane. I never did get positive blood tests. I had been gluten free for 3 weeks before getting tests done. So, for you to be 6 months gluten free- they won't come up positive. Mine did come back with low end of normal nutrient levels. That was enough for me, because I felt like poooooooooo (mentally, physically and literally). I had eaten properly in my 2 days of gluten eating and even took vitamin supplements. So with vitamin supplements and my blood work still low?? Tells me my bowels don't function with gluten- too bad the doctors are too up their bums to make that connection.

Thanks for the cupcake it was delicious!

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