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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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