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krisbeth

Mystery Illness Or Celiac?

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I'm relatively new to learning about Celiac and gluten intolerance, I just started reading about it a few months ago. It seems like it may fit, but I'm really not sure at all, and was looking for a little guidance. I have had bizarre health problems for a long time, and am happy to have a forum to write about it. Through my own mental health problems (diagnosed bipolar) and my doctors' inability to pinpoint anything, I have pretty much convinced myself that it is all in my head and that I am somehow making myself sick. Part of the problem is due to moving, I've changed primary care providers about every 3 years over the last 15 years. Currently I'm in grad school and have student insurance, so am stuck going to the student health care center at my university.

My best friend always figured they'd be naming some new physics principle after me, but sometime around my junior year of college I figured they might be naming a new illness after me (I'm 29 now).

Odd things:

-I've had more diabetes tests (glucose and A1C) than I can count over the last 13 years, always negative. I start shaking, having blurry vision, and getting confused if I haven't eaten recently.

-In high school I was out of school for 4 months with a "migraine". It didn't respond to medication, I even had a nurse coming to my house to administer IV drugs. It magically went away on its own, and the actual cause was never determined.

-Ten years ago they determined my thyroid function was low. I was on synthroid for 6 months, and then went off it. Every subsequent thyroid test has been normal.

-Also ten years ago I had a problem with fluid retention that lasted a week. Everything I drank I was pissing out again quite rapidly, I became so dehydrated I was hospitalized for two days. They tested for diabetes insipidus, but it came back negative. It magically went away on its own, and the actual cause was never determined.

-Five years ago I had an ovarian cyst removed. It was 7cm (about 4in) in diameter upon removal.

-Last year I had lithium toxicity with "normal" lithium levels. I got better as soon as I stopped taking the drug.

Before reading these conditions, note that I am small and athletic and try to exercise on a regular basis (when I'm not feeling too sick I do kung fu).

Diagnosed Chronic Conditions:

-bipolar

-high blood pressure (medicated)

-slightly elevated cholesterol

-asthma (on daily steroid inhaler)

I have a lot GI of problems that wax and wane over the last 15 years. I'll have them for a few months, then they'll go away, then they'll return months to years later. Most of them have been problematic lately:

-acid reflux (does not respond to OTC or prescription medication, but probiotics help)

-abdominal pain, sometimes so severe leads to vomiting, can stay like that consistently for months.

-bloating/noisy stomach/gas. This can been highly embarrassing and stinky!

-D/C

-stool is consistently sticky, almost always sticks to toilet bowl. doesn't really float. what's normal anyway? (sorry, gross)

-rapid weight gain/loss. In the past 10 years my weight has gone:

125 -> 115 -> 120 -> 140 -> 125 -> 115 -> 140 -> 113

It's quite the yoyo, and most of the weight gain/loss has been unintentional. Some of it may have been related to psychiatric medication.

In the past 9 months I have been complaining constantly about something relating to my digestive tract:

Summer: Had really bad heartburn. The doctor gave me some acid reflux medication, but it did nothing. Probiotics seemed to help some. Eventually it got better for awhile.

October: Continued stomach problems. I was a little crazy one week and hardly ate for 2 days and magically my stomach started feeling better, so I decided to try a gluten-free diet for a week. When I actually went gluten-free (I was reading all the labels, I think I was doing it well) I started having severe heartburn. I suspect it was from the increased amount of soy I was eating. I cooked some sort of pasta salad that had raw tofu instead of mayo and ate it for lunch for several days. I decided to ask the doctor about gluten sensitivity/celiac. He didn't know much about it, so looked celiac disease up on the internet on some family doctor website and listed off the symptoms for me.

November: Continued stomach problems, mostly pain, gas, and heartburn, intermitant D and C. Suspected problems with dairy and soy. After talking with a nutritionist and trying some lactaid pills, I have determined I am definitely lactose intolerant. Was also living off of benadryl, kept having itching problems after eating. It seemed to help, or at least put me to sleep.

December: Even after cutting out dairy and soy, continue to have stomach problems. Over winter break, I went to visit friends/family and was not cooking for myself. I had severe D and gas for a week that was not helped by immodium. My sister was sleeping in the same room and had to hear me groaning in discomfort all night. That improved, but I was still uncomfortable every time I ate. I couldn't wait until I was done visiting my friends (who I see 1-2 times a year) just so I could get home and cook my own meals. I was basically living off lactaid and benadryl during break, and after about a week the lactaid stopped working.

January: I get this weird pain in the right side of my abdomen, it feels like there's something in there taking up space, but I can't pinpoint it anywhere. Mostly problems with C, gas and gurgly noises in the stomach (I sometimes find myself lying awake at night groaning in discomfort), and abdominal pain to the point of vomiting (multiple times per week). I went to an allergist to see if I had any food allergies. The did about 70 scratches on my back, some environmental, some food, and all they determined I am allergic to is dust mites. They are doing some blood tests for autoimmune something this week, but would not tell me the specific tests.

February: I used to be able to eat dairy and it would just pass through quickly or cause gas, but last week when I had some frozen yogurt, I started having extreme stomach pain within 30 minutes and threw up. This week I'm on augmentin for a sinus infection, and it is curing the sinus infection, but it's causing persistent D (every time I go to the bathroom something comes out), frequent urination, excess gas, heartburn, noisy digestion, and my vision feels off. I've never had problems with an antibiotic before.

I find all of these problems strange, but they don't seem nearly as severe as some other people's that have posted on this site. Basically my digestive tract almost always bothers me, and I've lost 20lbs in the last year (that's about 15% of my body weight).

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I'm new here, so I don't have much to offer you! But I noticed no one else responded and I wanted to let you know I care!

I, too, have had a history of all kinds of physical problems---from bladder to stomach to allergies and asthma...and I've always been trying to find that magic bullet! I'm hoping my eliminating gluten from my diet may show to be that bullet. But I won't know until I try!

Go buy a book, stick with the diet and see if any of your symptoms clear up. Or go to your doctor and ask him to do some testing.

I wish you good luck, friend!

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Welcome to the forum krisbeth.

Your symptoms sound just as serious as anyone else. Don't discount them, something has been going on with you and you need to find out what that is.

I would recommened you get a celiac panel done along with vitamin and mineral testing. A lot of people have thyroid issues too, so get that checked.

Please keep us updated and ask anything you need to.

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