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Where To Go Next?

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Hi, my name is Laura and I've been lurking for quite some time now. ;) I've learned so much from reading all of your posts and I am so grateful this place exists. I am 18 years old and I've always been a "sick" kid. I didn't begin to put the pieces together until recently (doctors have not been helpful thus far!). As a baby I had many feeding and gastrointestinal issues, but I continued to grow so the doctors weren't concerned. I had multiple multiple ear infections up until about age 10, but then began getting strep fairly frequently. (I had my tonsils removed when I was 14 which helped with the strep but I now get sinus infections instead.) Somewhere between age 11-13 we sought medical help because I was having severe food poisoning type reactions (terrible cramping and diarrhea) to random foods

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False-negatives are extremely common with bloodtests for celiac. Count your blessings that you have found what is causing your numerous symptoms....and live a happy life from here on out. Many of us suffered from your same ailments well into our 40s and 50's. Welcome to the Forum!

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Your story is very well-written and you have done extremely well in figuring out what is wrong with you. So so happy for you that you know at such a young age. Your life will be immeasurably better than those like me (48)who have only known about gluten damage for a year or so. The diagnosis is only for you to know how to handle your symptoms. Some people feel they cannot stay gluten free unless they get an "official" diagnosis. So they go back to eating gluten for 3 months or so to get tested. It doesn't sound like this will be necessary for you given the relief you have felt in your short time being gluten free. If you are concerned about blood work just be sure sure you have it checked frequently to be sure the vitamins Celiacs are often deficient in are at normal levels. I wouldn't doubt it at all if all of your "viruses" and "infections" completely disappear in the next year. It happened to my son. He is 17 and gluten free for one year. This is the first year he hasn't had a lot of "infections and viruses" causing him to miss school. It can happen. Neither of us were tested but we had such a dramatic response to the diet and such drastic negative reactions to cross contamination that there is no doubt in either of our minds. I am just thrilled when young people figure this out and don't have to be misdiagnosed for years like me and a bunch of others. It really makes me happy to read posts such as yours. Thank you...and enjoy your new found health!

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If going off gluten has you feeling better..than obviously, it doesn't agree with you?

The blood tests are wrong 20-30% of the time. Did you have the gene test? Sometimes that can show if you're likely to have a gluten problem.

I agree with the others..you are very fortunate to be figuring this out at such a young age. So many of us go undiagnosed, or misdiagnosed for years and as a result have a lot of other health issues.

Best of luck to you!

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Thanks for the support!

Something has got to change with our doctors

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Don't let the placebo effect concern you to the point that you doubt yourself on this. And I might also mention that if you start to feel lousy say...in a month or two...you should be aware that some people develop increased sensitivity to gluten and start reacting to smaller and smaller amounts. Meaning trace gluten and cross-contamination become more significant. It would be a tragedy if you found the "placebo effect" to wear off and years later find out that you were really reacting to gluten after all but you didn't realize it because it was trace gluten. Thought this might be worth mentioning just in case... Still happy for you!

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Thank you!

Figuring things out on your own can be so satisfying, but it leaves you somewhat alone. I just feel like I cannot get enough information — there's so much out there.

I go back to see my regular doctor (who has not been involved in the gluten process as of now) in about a week. I saw him last week which was when he dx'd the acid reflux — he offered to run the celiac panel (good sign!), except that me having been gluten-free didn't quite sink in. To his credit, he was very busy and I took a cancellation, so it was an in and out visit. We'll see what happens and I will keep you guys posted.

~Laura )

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