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Results Are In---confused!

*Donna*

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*Donna* Newbie
*Donna*
Posted

I posted a couple weeks back wondering how long blood tests take...well I went to see my dr. today and I was told my bloodwork was negative for Celiac. He said something about my number was 17 and anything below 20 was normal. From what I read on here anything below 10 is normal??!! I am in Canada and I am assuming it is different here than the states? Anyone from Canada have the bloodwork done and what are the ranges? I was so sure it would be positive as I have almost every symptom possible! I am thinking of trying the gluten-free diet anyways to see if it helps. Are there any other diseases that would have all the celiac symptoms the same? I had my thyroid checked and it was normal. The only other thing I can think of is lactose intollerance. My dr. is telling me it is IBS--but I'm not buying that! <_<

~Donna

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happygirl Collaborator
happygirl
Posted

Donna,

Each lab is different. Enterolab, Prometheus, LabCorp, etc etc etc. Each has different ways and different scores. You'll need to get the full copy of the tests (not just have them read them...physically go pick them up!). That will help, because you'll see the reference ranges. Plus, if you have questions, you can post your results/ranges here and we can help. Definitely get a hold of them ASAP!

You may not have Celiac and may be gluten intolerant. Or it could be a host of other things (including other food intolerances). I would suggest trying the gluten free diet and seeing what happens.

As soon as you get your tests, let us know!

Laura

2kids4me Contributor
2kids4me
Posted

Symptoms for celiac are extensive and yes they can mimic other diseases, food allergies and intolerances. You can be gluten intolerant and/or have lactose intolerance, or food allergies that would create malabsorbtion.

Each lab has its own set of normal values - it varies from lab to lab depending on the type of test and equipment used.

My daughter was borderline for her blood results - yet positive on endoscopy for damage.

Try the gluten-free diet if you would like and see how your symptoms respond. If they persist - then eliminate casein or lactose..... experiment to see which elimination results in the most improvement.

Ask your doctor about testing for food allergies as a possible cause for your symptoms

LKelly8 Rookie
LKelly8
Posted
...well I went to see my dr. today and I was told my bloodwork was negative for Celiac. He said something about my number was 17 and anything below 20 was normal. From what I read on here anything below 10 is normal??!! ~Donna

Just to echo what others have said - ranges differ lab to lab, there are so many (over 200) possible symptoms with celiac that it's been called "the great chameleon", and get a copy of that bloodwork.

I had negative bloodwork twice, years apart, before being dx by biopsy. <_<

celiacgirls Apprentice
celiacgirls
Posted

My daughter had negative blood tests 3 or 4 times over the years but responds positively to the diet. I did have her tested by Enterolab which was positive but dietary response is just as definitive.

Terch Apprentice
Terch
Posted

Hi Donna,

My doctor didn't even do the bloodwork he just did an endoscopy. By the way I am Canadian as well. I know that our cholesteral numbers are very different than The United States so I think maybe that these tests might be as well.

I am going to see my GI on friday and I am terrified that it won't be celiacs, that it will be negative or worse that it will be something much more serious. Who ever thought I would want to have this illness...it seems that if it isn't celiacs they will go back to the ibs diagnosis and quite frankly I know it's not what I have.

Anyway after Friday depending on what I hear I will likely being going the enterolab route, you may want to think of that.

Good Luck

Helena Contributor
Helena
Posted

Hi Donna, well, I can't tell you much about the numbers . . .but I'm Canadian and I was tested in Toronto. It would matter too which test you are talking about---there is the EMA one and the tTG one and tests for antigliadin antibodies. My GI doctor ran all of them for me, but my sister was tested for EMA antibodies only. If you only had one test, you might want to ask about getting others done.

My doctor told me that my anti tTG antibody test was "slightly positive" so I guess that confirms what you've said---it isn't a black and white test. There's a range that is considered "normal" apparently.

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Terch Apprentice
Terch
Posted
Hi Donna, well, I can't tell you much about the numbers . . .but I'm Canadian and I was tested in Toronto. It would matter too which test you are talking about---there is the EMA one and the tTG one and tests for antigliadin antibodies. My GI doctor ran all of them for me, but my sister was tested for EMA antibodies only. If you only had one test, you might want to ask about getting others done.

My doctor told me that my anti tTG antibody test was "slightly positive" so I guess that confirms what you've said---it isn't a black and white test. There's a range that is considered "normal" apparently.

Hi,

I was wondering when you started to feel better on your gluten free diet. I have been 4 weeks without any real improvement.

Many thanks.

Helena Contributor
Helena
Posted

Well, it's hard to say because I've been on a "gluten light" diet for several years. (For the past couple of years, all the gluten I was getting was in oats which I ate on the rare occasion. I did have barley and rye a few times too.) But I did have to go back on gluten for the purposes of the biopsy (until my doctor suggested we cancel for various reasons) . . . I don't react as severely as a lot of people on these boards do. I have mild GI symptoms. Plus I feel kind of tired after eating gluten---I'm over that in about a day I'd say, so I noticed a difference right away. But I've heard that it takes some people awhile. Maybe you should start a new thread on this topic---I'm probably not the best person to ask.

KarenLee Rookie
KarenLee
Posted
Just to echo what others have said - ranges differ lab to lab, there are so many (over 200) possible symptoms with celiac that it's been called "the great chameleon", and get a copy of that bloodwork.

I had negative bloodwork twice, years apart, before being dx by biopsy. <_<

My GI Dr. said that if my Prometheus blood test comes back normal(I hope to get results back tomorrow), then there's no need for a biopsy, that we will assume that I don't have Celiac. If it comes back normal should I insist on a biopsy, too? I have read that so many people have neg. blood tests, but had pos. biopsy results. Oh, I also sent in the test to Enterolab a few weeks ago...

Thanks

Mayflowers Contributor
Mayflowers
Posted
You may not have Celiac and may be gluten intolerant. Or it could be a host of other things (including other food intolerances). I would suggest trying the gluten free diet and seeing what happens.

According to Dr Fine at Enterolab, it's all celiac disease. If you're gluten intolerant, you have celiac disease. There are just varying degrees of gluten intolerance.

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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