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Waiting For Blood Test Results
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My daughter (19) was given a blood test a week ago and we haven't heard anything. How long does that test usually take. She went to the Dr. alone and she says the dr. didn't tell her when we'd hear.

In the meantime she decided to go gluten free because she read the list of symptoms and had so many she got excited about feeling better. She is feeling a lot better. Her stomach has been a lot quieter. And she as hasn't had diarrhea for the first time in years. (except when she's been constipated.)

The main thing I have noticed is that she has been a lot easier to wake up in the mornings. For the last several years it has been absolute torture to get her out of bed. But in the last week she has gotten up before me and on the other days she has been very easy to wake up. And she is in a good mood!

I have a lot of questions, but here are two.

1. If something has no gluten ingredients but was made on equipment that was also used to fix wheat, is it safe? Is this one of those things that you just have to try because some can handle it and some can't?

2. If a person has celiac, have they always had it? Can they ever get rid of it?

I look forward to learning for your experience and knowledge.

Sharon

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The symptom of lethargy and tiredness and difficulty waking is consistent with the opiod effect of gluten. My son is 16 and within a week of gluten free he was easy to wake up, but it had been torture since he was 9 to wake him. I, too, had the sluggish sleepiness in addition to a bunch of other symptoms.

In two weeks of gluten leaving this house, the moods got lighter and we are playful with each other. Before that we were both just dragging through everyday life until we could fall into bed again. It is such a relief to have our personalities back.

To answer your questions: In the beginning I wasn't worried about "processed in a facility that process wheat" statements. I just didn't think I would be THAT sensitive to gluten cross contamination. However, it didn't take long for me to start wondering what was making me feel bad, and those were the first likely culprits. I don't eat them anymore if they say that on the label. You are absolutely right that it is an individual thing, and some people find they can handle it. Others can't. I guess it is trial and error on that one.

The second question: No you can never get rid of it. The avoidance of gluten will have to be a lifetime commitment. There is no cure or medicine. Reactivity actually becomes more sensitive once the gluten is out of your system. At least for a lot of us. Such that cross contamination becomes more of an issue and makes you sicker than you ever thought one grain dust of wheat could make you. You won't believe it at first. But you will have to believe it to keep staying well. I learned the hard way, yes, lipstick can make you sick. Yes, kissing someone who ate gluten can make you sick. Yes, eating in a restaurant that serves pancakes can make you sick no matter what you order.

Have you had it all your life? Research is mixed, with some saying gluten intolerance is on a continuum and ends with Celiac. Others say it is with you all your life, it is only when you get the realization or the diagnosis that you can look back on symptoms that were probably present your whole life, but were never attributed to gluten. Others say it takes the Celiac gene and a "trigger" in the environment such as a viral illness to cause one to start reacting to gluten. Others say you can develop Celiac at any age.

The only consensus is that gluten must be avoided for life to prevent illness and damage to the Celiac or Gluten Intolerant person.

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Glad your daughter is feeling better.

I don't know much about celiac disease because I am still in the middle of testing. I just wanted to share my story because I wish I HADN'T gone gluten-free so soon.

I had the blood test done and was found to be POSITIVE. The doctor was certain, without a doubt, that I had it. She referred me to a specialist. Being impatient, against the advice of everything I have read, I went gluten free because I was so looking forward to feeling good again. When I finally got seen by the doctor I had been gluten-free only 10 days. Not long enough to feel better, but maybe long enough to mess up future tests. He gave me a blood test that day and scheduled the endoscopy two days later. He felt sure that the 10 days would not change the results.

Well, both the blood and biopsy came back negative, so I am back at square one. It is even more frustrating now, because I know I have it, but to get a diagnosis, I now have to consume gluten for the next three months in order to be re-tested.

I know many don't need an actual diagnosis but I want one so I can ensure that my doctor is on the lookout for any related conditions down the road. It is important to me to know for sure. I would imagine at age 19, you would also want to be very certain before making a life-long change.

Anyway, I just thought I'd share. I really wish I hadn't changed my diet before the testing was complete.

Cara

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
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    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
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