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Ninja

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Ninja Contributor
Ninja
Posted

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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rosetapper23 Explorer
rosetapper23
Posted

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!

eatmeat4good Enthusiast
eatmeat4good
Posted

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!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

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!

Ninja Contributor
Ninja
Posted
  • Author

Thanks for the support!

Something has got to change with our doctors

eatmeat4good Enthusiast
eatmeat4good
Posted

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!

Ninja Contributor
Ninja
Posted
  • Author

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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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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