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My daughter is now 5 1/2 and I have suspicions of celiac disease. My mother has it, and I have "suspected" celiac and have been 100% gluten free for a year and half. My daughter was tested at 2 years old due to family history and her small size, but the bloodwork was negative.
She is still extremely small for her age, maybe moreso now than she'd been at 2. She has phases of diahrea, but then it always passes. She complains of tummy pain, but it always passes, lethargy at times.... She's not "sick" like my mom and I were, but I always question it with her...
If her bloodtest was negative 3 years ago, is it worth redoing? Can it change?
Thanks for you help!
depends how long you have to wait for the biopsy. However, a false negative biopsy is more common than a false positive blood test. Depends on the severity of villi damage....you can have symptoms even before the villi are severely damaged...
oh well, if you weren't eating gluten, then there you go! You have to be in order for the biopsy to be accurate. And do you feel better when you stop eating gluten? Do you need more of an answer than that? I've had a top GI tell me that clinical results are worth way more! He said negative biopsy and all, he considers me celiac...
Well, I had an "inconclusive" blood test and negative biopsy (of course this was done several months post gluten-free) We had suspicions and there was no way I could continue to eat gluten while waiting for the biospy (gotta love Canada's healthcare system!)
My mother has celiac and I had 100% the same symptoms as she had. I eliminated gluten and s...l..o..w..l..y but surely I got better. My gastro felt confident in saying I had celiac based on elimination of other diseases and family history.
Tests are not perfect! Despite my results I will NEVER eat gluten!
Hi Sorry about your struggle. I was in a similar situation where we did not have the 100% YES you have celiac diagnosis. Luckily, my husband was supportive none the less and often believes it more than I sometimes do....
I also have to family history, and symptoms, but inconclusive blood tests.
Do some research on the internet about false-negatives results, clinical trials (if you stop eating it and get better, there's your answer.)
It's too bad that he's not more supportive on his own, but work at it. Prove it to him! And I say don't wait to go gluten-free. Everyday you keep eating you're losing a day towards your full recovery!
I'm looking for a gluten-free OTC sleep aid...besides melatonin, since I'm taking 9mg and still lie awake for hours. I used to love Nytol, but they say that although no gluten is added, it's not certified gluten-free. I was actually on oxyzepam to help me sleep, but it no longer works.
A bit of history....prediagnosis I slept fine, the first couple of months gluten-free I slept fine, and now suddenly it's an issue. I've had other phases in the past, but I don't believe it's related to gluten....I know it will pass, but meanwhile I need some sleep....well, more than I've been getting!
I'm so tired of being out of breath. I've been gluten-free for 5 months now and it has definitely improved, but still randomly, I get so out of breath from very simple things...sometimes for no reason at all. I used to be an athlete and now 1 flight of stairs and I'm winded. I'm 33 years old, healthy, non-smoker. I'm tired of this.
Am I alone?
I need to have the colonoscopy done anyway, so I called the Dr today, and they said that he would see it, so just wait the week until the colonoscopy and "while he's there" he'll keep an eye out for worms, too. Then we'll proceed from there. I guess if I do have them (please no!), what's another week?! the joys...
I will discuss with my Dr next time I see him for sure. It's just that I'm having a colonoscopy done next Thrusday and that's when I'll see him next...I didn't suspect worms (or at least not as seriously) when the colonoscopy was planned...
it's terrifyting to get get sick after getting better. I had what turned out to be a virus mid-October and I absolutely freaked out...thinking that I was headed back to where I'd been before eliminating gluten. It really messes with the mind.
Hopefully rest and time will put you back on track.
Didn't know which category to put this in..sorry.
I'm just wondering if a colonoscopy can detect worms/parasites? Or will the cleanse before get rid of them? Or will it cause them not to show in the colonoscopy, but still reproduce after???
Wow. What a story. My understanding is that to do a gluten challenge you must eat gluten for 8 weeks. 8 weeks is long enough to get very sick again. That is why, in my case, my Drs agreed that this was unnecessary. My bloodwork, which was done while technically still on gluten (although, I'd hardly eaten for a week, had diarhea 8x/day and was dehydrated) came back negative. But, since I immediately went gluten-free after the blood test and it took over 3 weeks to get back results, I'd had enough time to see improvement (not one of those miracle stories where I stopped eating gluten and was "all better" within a week) but enough that we all decided heck no to a gluten challenge! My mom was also diagnosed with celiac 4 years ago...
Regardless of what you both decide for traditional tests, I would absolutely do your clinical testing on a gluten-free diet. Of course your mom seems like she needs more help than just that at this point.
Good luck and stay strong!
SO good to read this! I've become a hypocondriac (no idea how to spell that!). Some things have been real and terrified me thinking that something else was wrong and some things I think I'm bringing on myself with all the anxiety. Right now, when I'm being logical I know that I feel fine, my only symptoms are caused by my own anxiety about not feeling well!
I figure that each good day that goes by I get a little more confidence in my body....