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To Test Or Not To Test
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6 posts in this topic

Hello, all! This is a long one, but there IS a question at the end, so feel free to skip to that.

 

It all started with an article in Prevention magazine that my mother left on my coffee table. “Could it be gluten?” it asked. “Check off any of these common signs of gluten sensitivity that you experience.” Frequent constipation or diarrhea? Check, both, alternating. Abdominal pain or stomach cramps? Yep. Headaches? Every day of my life. Fatigued even after getting enough sleep; difficulty keeping mental focus; skin rashes; waking up with stiff joints; depression? Always, yes, sometimes, yup, and check.

 

So I decided, okay, I’ll eliminate gluten for the month of June and see if I feel better. Then came the inevitable Internet Research. I try not to get sucked into the catastrophizing that usually happens when people search for medical symptoms and diagnosis on Google. Instead, I tried to focus on what would help me to learn more about gluten and prepare for this month-long experiment. Initially I had thought maybe I have a bit of a gluten sensitivity, but it’s not nearly bad enough to be celiac disease, right? Because I had this impression that celiac disease, for everyone who has it, is excruciating stomach pain and crying in the bathroom because it hurts so badly. I feel like crap all the time, but I manage.

 

But the more articles and blogs I read about symptoms and testing and how amazing people felt after eliminating gluten, the more I got sucked in, and I learned that not everyone with celiac has those super-severe symptoms. As I read personal stories and lists of symptoms, I thought to myself, “This could be me. This could be why I’ve been sick in so many ways for nearly my entire life.”

 

Last fall, I participated in a “cleanse” for three weeks, during which I eliminated dairy, wheat, meat (only for the first week), caffeine, etc. and was basically just eating fruits, veggies, rice, and lentils. If I had been smart, I would have finished it properly by gradually reintroducing the different types of foods and observing my body’s reactions. Those three weeks were probably the healthiest I’ve felt in my life, but I didn’t realize it until afterwards when all my symptoms reappeared, and I wasn’t able to pinpoint the exact cause.

 

I’ve been wavering between just eliminating gluten on my own or actually going to the doctor to be tested for celiac. I don’t have a PCP, and I’m not really one for going to doctors because I haven’t had the greatest experiences with them in the past several years—plus it’s so expensive, even with insurance. Yesterday, I called and was put on a waiting list to see the doctor who seems to be my area’s medical expert regarding celiac; he’s booked through June.

 

I’m not sure why, but part of me feels like that official diagnosis is important to have. Maybe for some kind of validation or something? At the same time, why not just cut out gluten, see if I feel better, and be happy with that, without wasting money on tests and office visits? But then what if I decide, later on, that I SHOULD get tested, and I have to go back on gluten and be miserable all over again?

 

So tell me: what are the benefits of going to the doctor, getting tested, receiving an official diagnosis? Are there any?

 

I saw another thread that was kind of asking a similar question, and I found some good insight there. I was hoping to get some more opinions. Do you think that a diagnosis might make it more "real"? Or make you take it more seriously?

 

I'm glad I found this forum. It's been very helpful as I've tried to become more aware of everything surrounding gluten. :-)

Edited by axm9237
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I don't have answers for you, but am also asking the question of whether to get tested.  I was tired of going to bed with a trash can every night because I felt so nauseous. I thought I just had a sensitivity, too, so I cut back on my gluten intake. I would "cheat" on the weekend in case I felt sick. My nausea went away almost immediately and my little bit of gluten on the weekend is making me feel worse.  I've got an appointment scheduled for June but can't imagine going back on a gluten diet for several months. I also am disappointed to hear many people share their bad experiences with the doctors.  I'm afraid that a doctor's visit may only make things worse. Wish it was easier to diagnose.

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My husband's been gluten-free for over 12 years.  No tests.  Just trial and error and the advice to avoid gluten per two medical doctors.  He's been happy and it was easy for us to comply since I had food allergies/intolerances.  I was recently diagnosed with Celiac's and was tested because: 1) avoidance of potential health issues for my daughter and rest of extended family and 2) to get others to comply with the gluten-free diet.  There's nothing like a good old pathology report to convince family of friends that you do "really need to stay clear of gluten".  

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I have been gluten free for 13 years now, and I was self-diagnosed after doing a fast and then eating seitan (which is fake, vegetarian chicken) and is made from 98% gluten. I had the most intense, undeniable reaction within 15 minutes of eating! I've been gluten free ever since. This year, I decided to get tested b/c my husband is kind of a pain about my lack of a true diagnosis, but I was unwilling to be back on a gluten diet for long enough. I had cheated a few times, and figured that I would get tested. It came back negative, and I was unwilling to even think about eating gluten again, so I guess it was a total waste of time and money. My son is now showing signs of gluten sensitivity and has been eating gluten every day. I am having him tested tomorrow, and honestly, b/c of my husband's attitude, I am hoping it comes back positive. If it does not, I still think he would be better off not eating gluten, as he is showing the very allergic and always stuffy signs that I lived with my whole life until I quit eating it. So, do I (and my son) just have a sensitivity and not true Celiac Disease? I don't know. For myself, I consider myself to be allergic. For my son, I would like a diagnosis so that my husband can know for sure. The knowledge that gluten was causing my health problems was undeniable for me, and I never needed that diagnosis. When you're dealing with a 4 year old, it's a bit harder to figure out. Good luck with your decision. I say just quit eating it, and start living a healthier, more energetic life!

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I'm in the middle of a similar process, and I think this is a very individual decision, but here is why I decided to get tested:

 

1) I have a daughter who is almost four, and she is experiencing almost exactly the same symptoms I had as a child. Like so many others, I've had a whole host of really unpleasant and persistent but never-super-serious symptoms over the years, and so many doctors have downplayed the constant nausea, diarrhea, and rashes that it ended up making me resent doctors and feel reluctant to seek medical attention even when I clearly needed it (e.g., when I had a 103.5 fever that wouldn't go down). I don't ever want my daughter to go through that. If it turns out that I have celiac, they will have to agree to test her.

 

2) A whole lot of people in my extended family have similar symptoms, especially bizarre but not-medically-serious neurological symptoms that remain unexplained. The digestive problems have always been attributed to extreme lactose intolerance or reflux, and the neurological symptoms have always been attributed to some sort of vague family tendency toward "nervousness". If I find out that I have celiac, it could help a whole lot of others find the cause of their medical problems.

 

3) I want to know whether eating a tiny bit of gluten once in a while would actually be damaging my body, or just making me feel awful. I'll never go back to eating it regularly either way, but if I don't have celiac I might eat a little bread when traveling, or when I'm really hungry and there are no gluten-free options. If I have celiac, I'll never do that. 

 

I also had an extremely strong negative reaction to reintroducing gluten, and I'd only been gluten-free for less than two weeks! I've never liked bread or pasta and always knew I didn't feel great when eating it, but until I did a clear test I'd always downplayed how horrible it actually made me feel. Now it is crystal clear, regardless of how the tests turn out. But I do feel like I need to know for sure, so that I can make informed decisions for the rest of my life. 

 

Good luck with whatever you decide to do!

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Sorry for the late response. I've been having internet trouble. I just wanted to thank you all for your insight. It was very helpful!

In weighing the pros and cons of testing, I've decided to just eliminate gluten on my own for now, and if I need to get tested later on, I'll deal with it then. Unfortunately it was the cost of testing that ultimately made the choice for me. There's just no possible way at this time that I could afford it.

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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!  
    • 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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    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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