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Waiting Forever For Test Results
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3 posts in this topic

Hi,

I have had terrible, debilitating stomach problems for a couple of years now. I've had loads of blood tests. One turned up that i have Pernicious Anaemia, and the doc said I would feel fine once I started B12 shots and Folic Acid pills. I've been getting steadily worse - both stomach related and general health.

Eventually my doc referred me to the GI unit at the local hospital. I had blood tests taken - for what I don't know. Brittish health care may be free, but it's not the best. I waited at least two months for the blood results, and actually never got them - but I did get called in for an endoscopy. I wasn't worried until I was informed, once I had the tube down my throat, that they were taking a biospy. It's hard to ask questions under these circumstances. I went to my doctor for my results - surprise surprise - they weren't in. I did manage to find out there was an anti-body for celiac found in my blood terst. Should I assume I have celiac disease until the doctors finally get their act together, or is there a good chance I don't have it?

All I know is that I feel really ill, and also have a blistering rash which could be that DH.

Any advice on how to cope with the uncertainty would be really great. I can't get my head round going gluten free until I have a diagnosos. I don't know how I'll manage even if I do have it - also if I don't have celiac, what else could they be analysing a biopsy for?

Hope that wasn't too rambling - thanks in advance for any advice or help.

G

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HI,

Sorry to hear you have to wait so long. It's so hard not knowing. however, if you have already had the blood work done, and you have had the biopsy done, there is no harm in strating the gluten-free diet and seeing if you notice any difference. You may know before the Dr gets back to you just based on your symptoms. I notice improvements within about a week after going gluten-free. youmay be suprised how well you will feel.

Hope all goes well

Laura

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They should have told you ahead of time that they might be taking a biopsy. This would have been less stressful for you. I was asleep for my endoscopy, so I wouldn't have known anyhow, but the first time the doctor did not biopsy, and the second time I made sure she was going to biopsy.

If your blood test was positive for antibodies and you already had the biopsy done, then Laura is right, you should try the diet. It won't hurt you, and it may just be the answer to all your problems. It is not easy, but you could just tell yourself that you are just going to try it for a week or two and then it won't feel too bad. If you feel better then it will be easier to stick with it.

I would also try calling the doctor everyday for the results. Eventually they will have to give them to you. Sometimes the results are there, but until the doctor looks at them they just keep telling you that they don't have them yet. So bugging them daily may just put enough pressure on the doc to look at the tests. Good luck.

Looking forward to hearing the results or whether you are going to try the diet or not.

God bless,

Mariann :)

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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!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • 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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