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Got Results Back Its Not Lupus
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6 posts in this topic

so once again i get a negative result!!!

 

not sure how long i can cope with all this .im so fed up at the moment. i dont have lupus but my blood sugar is a tiny bit high ( the nurse said its hardly worth commenting on)- but they are gonna do a diabetes test anyway. my b 12 is low so ive got some tablets to take. when the doc was looking at the computer i was having a sneaky read - my b12 was 138!! i thought that was really low- so now im taking tablets for 3 months with no way of knowing if they are being absorbed or not.

she has said that shes refered me to a dermatologist for the rashes which is good- hopefully i,ll get some answers from them.

i did think i saw a few abnormals on the test results when i was having a sneaky peek so im gonna ring up tomorrow and ask for copies and copies of the last one that had the celiac tests on. that should be interesting to see exactly which tests they did.

 

so ive had my moan lol. hope i get some answers soon..

 

 

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I'm glad to hear that it is not Lupus.

 

There is enough evidence to show that gluten is "more complex" for the human digestive track and that auto-immune disorders do better on a gluten free diet.When your testing is complete, try a gluten free diet.  If you feel better not eating gluten, then don't eat it.  Your body's reaction is a "scientific" proof.  (You will unfortunately have an accidental glutening that may prove this.)

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Low B12 can really mess with your nervous system and more. Hopefully the tablets you are taking are sublingual. Sublinguals are absorbed by the mucus membranes in your mouth and bypass a damaged gut. Hope you get some answers soon and once your celiac testing is finished be sure to give the diet a good strict try for a bit.

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Celiac can mimic lupus, there are a handful of us around here who thought we had it because our symptoms were the same. Luckily, if it is celiac disease, our symptoms will improve over time (years). It's toughto have no diagnosis because we aren't given meds to treat symptoms in the short term, but at least we have the potential to get better in the long run.

 

I hope you feel well soon.

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I'm glad to hear that it is not Lupus.

 

There is enough evidence to show that gluten is "more complex" for the human digestive track and that auto-immune disorders do better on a gluten free diet.When your testing is complete, try a gluten free diet.  If you feel better not eating gluten, then don't eat it.  Your body's reaction is a "scientific" proof.  (You will unfortunately have an accidental glutening that may prove this.)

hi thanks for answering

 

i am doing gluten free - since january. i felt fantastic at first then other symptoms kicked in. gave up dairy, soya and nightshades. but any testing i had done was all negative. i still have joint pain and so tired. but now im b12 deficient im now thinking that all my problems are down to that and maybe im not gluten intolerant at all. this not having a diagnosis is really getting to me. i did get my results off the doctor but theres only one test been done. dont know if you know anything about the tests but here's what was done.

. iga level       0.7          u/ml       (<6.9 u)        nk         normal

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oh forgot to mention that ive started to "grow" lumps on my middle knuckle of my middle finger. worst on my right hand but my left is starting to go the same way. thats why the doctor tested me for auto immune disease. but the only thing they,ve found is the low b12- dont know if the knuckle thing could be coz of that ?

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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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