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rhubarbarin

First Visit To The Doctor In 7 Years - Pursuing Diagnosis

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I recently got health insurance, and am scheduled for my first check-up since I was 17 years old. I plan on asking for celiac blood testing at this appointment - I assume a family doctor can at least take my blood and send away for the results? I have an HMO so I need referrals from my new GP (hope I like him and he is helpful) for anything he doesn't offer, and there might be waits involved.

I am sure wheat does not agree with me - I have had EXTREME bloating after eating, and crazy amounts of gas from both ends (farting was uncontrollable and very pungent - embarrassing!), for as long as I can remember (and ate wheat products nearly every meal my whole life). Since I started experimenting with gluten-free foods - I discovered why. After a day without wheat, these symptoms are gone!

Otherwise I am in generally good health (great immune system, live an active life), but I am hoping getting some sort of diagnosis will provide me with more motivation to cut gluten out completely. I have a history of somewhat minor health issues (all shared with my father, who does not have a diagnosis) that all sound about right for celiac/gluten intolerance:

*Aforementioned severe bloating, pressure, and gas which is obviously due to wheat products (haven't noticed anything from oats or rye etc). Also, slight stomach pain/cramping if large amounts are eaten, and severe stomach pain if any is eaten after a period of being wheat-free.

*Very frequent, very soft bowel movements which are always full of undigested food particles (I haven't seen much of a difference in this during gluten free periods, but I've never done more than a few weeks).

*Severe pediatric migraine, often triggered by eating. Migraines have improved as I got older but I still get a few every month, and can't figure out what causes them.

*Chronically underweight since age 3 or 4. I was diagnosed with failure the thrive at one point, did not grow in height or weight between ages 8-11. I eventually did catch up in height and average for my family. With lots of eating and exercise lately I have gained a few pounds - currently 5'5" and 105 lbs, my highest weight ever. My sisters (both teens) are slim also (not underweight), but my family tends to BMIs between 23-27 so this has always been cause for concern. Doctors were never able to figure it out. I look okay and have normal body fat, but have lots of visible bones and would look much healthier with more meat. This also affects my athletic performance - I practice yoga and have been unable to progress beyond a certain point because I can't grow more muscles (can't cover the bony girdle of my shoulders). I also can't run the way I would like to.. more than a few miles exhausts me, no matter how many calories I take in.

*Hyperactive as a child, now issues with being tired, overly sleepy and unable to get out of bed (overeating and exercise help, but it's still something that impacts my life).

*Heavily coated tongue my whole life. I scrape it every day. Doctors said it was not thrush.

*Skin issues and disturbances - very dry skin that sheds heavily/improperly, acne, and constant issues with eczema, hives, blistering rashes, generalized dermatitis. I nearly always have some sort of rash on one part of my body. The only trigger seems to be stress. Doctors only ever prescribed steroids, which I don't like taking, so I stopped - take Benedryl if the itching is very bad and it always resolves with time.

*Younger sister shared the skin disturbances, with more severe eczema - she was recently diagnosed with a casein sensitivity, with no dairy her skin has been perfect. Cutting back on dairy clears up my acne to a big degree, but again I just can't stick to it!

As a teen they thought I had an eating disorder - no. I had routine blood tests several times, everything was within normal levels (including thyroid).

If I don't have any luck with a diagnosis of celiac, what tests can diagnose gluten intolerance? Based on these symptoms, I think I should try going gluten-free full time anyway - anything that makes you bloat like I do just can't be good, no matter if tests show it or now. But I just want some outside validation, for some reason.

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Make sure you've been eating gluten for at least eight weeks (and plenty of it each day) before blood tests, or the results have a much higher chance of being inconclusive or giving you a false negative.

Yes, those symptoms are very much in line with celiac, and the tests on the gluten-free diet *ARE VALID DIAGNOSTIC TESTS*. Please don't ignore them and expect all your answers to come from someone else. (That's really what outside justification is...). Sure, this may be a great time to diagnose, since you haven't committed to a gluten-free life and have insurance, but realize that YOU KNOW what makes you sick, what hurts you, and therefore you have no reason to continue getting sick and being in pain.

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Make sure you've been eating gluten for at least eight weeks (and plenty of it each day) before blood tests, or the results have a much higher chance of being inconclusive or giving you a false negative.

Yes, those symptoms are very much in line with celiac, and the tests on the gluten-free diet *ARE VALID DIAGNOSTIC TESTS*. Please don't ignore them and expect all your answers to come from someone else. (That's really what outside justification is...). Sure, this may be a great time to diagnose, since you haven't committed to a gluten-free life and have insurance, but realize that YOU KNOW what makes you sick, what hurts you, and therefore you have no reason to continue getting sick and being in pain.

Thanks for the reply!

Since I feel fine most of the time, and want the diagnosis, I have been intentionally eating gluten. I'll make a deal with myself right now - even if the tests are negative, I will try an extended period of truly gluten-free (not just no wheat) to see if it changes anything other than the digestive stuff.

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