Did I Do The Right Thing Requesting A Blood Test?

[Hadenuff20]

First of all happy new year to you all from me in the uk

I found the link to here via google and this appears to be a busier forum than any ive found so far. I am as yet undiagnosed and might never be, but i thought it might help to speak to people with similar symptoms as me just to reassure myself that I'm not going mad and that I'm not a hypochondriac as I'm sure many of my friends and family think I am. I have had a few health issues over the last 8 years or so but things have been taking twisty turns now for the last couple of years.

I will list my symptoms in some sort of order but its all such a muddle!

Diagnosed IBS about 8 years ago - this gets the blame for many of my following doctors appointments. over the last 2 years I have had numerous appointments and new symptoms appearing.

Firstly I had unexplained bruising - diagnosed with having a platelet function disorder (long clotting time)
Tiredness and fatigue - like hitting a brick wall by 6pm and needing to sleep when i eat anything during the day or evening.
dizzy spells - almost like a hangover head - kind of light heated feeling spaced out.

terrible memory
palpitations when I relax in the evening.
insomnia - legs hurting through the night along with back spasms.
Night sweats
Bloating and pain - Doc back in July sent me for an ultrasound scan on my ovaries, the lady struggled to do it because of my very bubbly belly. ovaries are fine.
Bubble and noisy belly (embarrassingly noisy at times!)
tingly fingers sometimes
Vit D low - now on tablets (I'm always in the sunshine and eat very well)
then my eyes started going funny - i get floaters that last for ages, optician had to stall the eye test to allow them adjust and off the back of this i get night blindness. optician said to go back to docs as my eyes are behaving like a pensioners. (charming!)
Doc ran further exams - and we discovered my balance is shocking, so i now have a ophthalmologists appointment in feb.
I noticed my nails have gone funny - deep and visible horizontal dents in them.

I spoke to my GP on the phone on new years eve and requested the gluten blood test. "oh its not that" she said. (why are they so reluctant to test for celiac disease?) It would appear she is now psychic. However she did put me in for the blood test and I had it this morning - my results should be back in a week.

 

If it comes back negative I am stuck - haven't a clue what's next?! Doctor already spoke to me like i know nothing and the test was done reluctantly. She didnt say I would need 6 weeks of eating gluten daily for the test to show anything so i assume it will come back negative. Although i do eat alot of gluten in my day to day diet.

I am really needing answers now because i have had enough of generally feeling like the rough end of a badgers backside.

So there's me! sorry for the long first post and I'm not really asking a question as such, but it would be good to get some feedback of sorts from like minded/bodied people who are not going to tell me I've lost the plot!

Best regards
x

[NoGlutenCooties]

Welcome to the forum and Happy New Year!

 

First, I have found doctors to generally be pretty fairly clueless, especially with conditions and diseases for which there is no prescription medicine available.  You are absolutely right to be your own advocate and insist on being tested.  Completely realistic given your symptoms.  The confounding thing about Celiac is that there are hundreds of potential symptoms, including all of the ones you listed, and every single symptom has other potential causes.  Some doctors just don't like to believe that something as simple as a specific food could cause so many problems.  But it absolutely does.

 

The 6 weeks of daily gluten intake is recommended for people who have already gone gluten-free prior to being tested.  If you are gluten-free the test is useless because the bloodtest tests for antibodies that your body no longer produces if you are not consuming gluten.  If you've been eating gluten regularly in your normal diet then you should be fine in that regard.  One word of caution though - if the doctor tried to tell you that you are "borderline negative" or exhibit a "weak positive" insist on getting a copy of the actual results so you can see the numbers for yourself.  In my opinion, there is no such thing as a "weak positive" when it comes to Celiac.  That's like saying you're "weakly pregnant".  But given your symptoms, if it is in fact Celiac then I would expect the numbers to be in the clearly positive range - but you never know.

 

Also, you should continue to eat gluten until you get the test results.  If they come back positive then they will most likely recommend an endoscopy and biopsy.  (If they don't then request it yourself.)  This is necessary to confirm Celiac as well as to rule out other potential conditions and the test will not be accurate if you are not still eating gluten.

 

Closed minded, ignorant people are everywhere and the medical profession is not immune.  Good for you for doing your own research and sticking up for your own health! 

 

Good luck - let us know how your tests come out.

[Hadenuff20]

Welcome to the forum and Happy New Year!

 

First, I have found doctors to generally be pretty fairly clueless, especially with conditions and diseases for which there is no prescription medicine available.  You are absolutely right to be your own advocate and insist on being tested.  Completely realistic given your symptoms.  The confounding thing about Celiac is that there are hundreds of potential symptoms, including all of the ones you listed, and every single symptom has other potential causes.  Some doctors just don't like to believe that something as simple as a specific food could cause so many problems.  But it absolutely does.

 

The 6 weeks of daily gluten intake is recommended for people who have already gone gluten-free prior to being tested.  If you are gluten-free the test is useless because the bloodtest tests for antibodies that your body no longer produces if you are not consuming gluten.  If you've been eating gluten regularly in your normal diet then you should be fine in that regard.  One word of caution though - if the doctor tried to tell you that you are "borderline negative" or exhibit a "weak positive" insist on getting a copy of the actual results so you can see the numbers for yourself.  In my opinion, there is no such thing as a "weak positive" when it comes to Celiac.  That's like saying you're "weakly pregnant".  But given your symptoms, if it is in fact Celiac then I would expect the numbers to be in the clearly positive range - but you never know.

 

Also, you should continue to eat gluten until you get the test results.  If they come back positive then they will most likely recommend an endoscopy and biopsy.  (If they don't then request it yourself.)  This is necessary to confirm Celiac as well as to rule out other potential conditions and the test will not be accurate if you are not still eating gluten.

 

Closed minded, ignorant people are everywhere and the medical profession is not immune.  Good for you for doing your own research and sticking up for your own health! 

 

Good luck - let us know how your tests come out.

Many thanks! I will take on board what you have said and return with my results as soon as I know

[SugarSpike]

Hi Im also new here and from the UK.

 

I can relate to alot of your symptoms and am currently seeking a diagnosis, I had the blood test about a year ago but had already started cutting major sources of gluten so have decided to have a re-test so am currently back on a gluten filled diet!

 

Dr's for some reason dont seem to want to test for this condition, when I told my GP about my stomach aches and the bloated belly I was suffering alot she shrugged it off as a 'bit of IBS' when I said I wanted a test for coeliac..the look the gave me! Sent me for the bloods which came back neg but nothing more was said, no treatment for my little bit of ibs.

I now see a better gp who is trying to sort all my blood sugar problems and when I mentioned about the coeliac screen he did check back and look at it for me and said it was normal. I asked if I should pursue it further he said they couldnt without a positive blood test, he ordered some more anyway and told me to eat as much as I could and see if its shows anything but again wasnt that bothered, didnt even want to hear my symptoms.

If this second test comes back neg again, Im not sure where I will go from here, there is no way the gp will take it any further, even if you explain the blood test bring false negatives alot.

 

I will cut out gluten no doubt but how easy it will be without a diagnosis I dont know, even family etc think you are talking rubbish when you talk to them about it and I cant understand why.

 

Good luck and please let us know the results!

[Hadenuff20]

Hi Im also new here and from the UK.

 

I can relate to alot of your symptoms and am currently seeking a diagnosis, I had the blood test about a year ago but had already started cutting major sources of gluten so have decided to have a re-test so am currently back on a gluten filled diet!

 

Dr's for some reason dont seem to want to test for this condition, when I told my GP about my stomach aches and the bloated belly I was suffering alot she shrugged it off as a 'bit of IBS' when I said I wanted a test for coeliac..the look the gave me! Sent me for the bloods which came back neg but nothing more was said, no treatment for my little bit of ibs.

I now see a better gp who is trying to sort all my blood sugar problems and when I mentioned about the coeliac screen he did check back and look at it for me and said it was normal. I asked if I should pursue it further he said they couldnt without a positive blood test, he ordered some more anyway and told me to eat as much as I could and see if its shows anything but again wasnt that bothered, didnt even want to hear my symptoms.

If this second test comes back neg again, Im not sure where I will go from here, there is no way the gp will take it any further, even if you explain the blood test bring false negatives alot.

 

I will cut out gluten no doubt but how easy it will be without a diagnosis I dont know, even family etc think you are talking rubbish when you talk to them about it and I cant understand why.

 

Good luck and please let us know the results!

Hi!

Sounds like we have the same gp! I could 'feel' the look down the phone! Its crazy.

Like you im not sure where to go next but a kind soul over on a uk page has advised to ask for liver enzyme result as even if they are slightly raised there is a link to gluten sensitivity, and to push for a referal to a dietician. There has to be something and im cinvinced its food related!

The very best of luck to you too and keep posting on your progress x

[1desperateladysaved]

I believe you did the right thing.  Have a look at what Mayo Clinic says about nails and what they indicate. www.mayoclinic.org/nails/SLS-2007631

 

Does anyone know more about nutrition and nails?  I thought anemia might be shown, but didn't see it in the above slides.  I know my functional medicine nurse checked my nails carefully for signs of low nutrients.

 

D

[Hadenuff20]

I believe you did the right thing.  Have a look at what Mayo Clinic says about nails and what they indicate. www.mayoclinic.org/nails/SLS-2007631

 

Does anyone know more about nutrition and nails?  I thought anemia might be shown, but didn't see it in the above slides.  I know my functional medicine nurse checked my nails carefully for signs of low nutrients.

 

D

Thanks I'm not finding anything exactly like my nails there, the nearest I would say are beaus lines, although mine are more like ripples/waves than sharp ridges. Im sure its nutrition related. This is what it so frustrating, so many things going on but struggling to get the doctors to make a connection. I dont think any of my doctors ever did dot-to dot pictures when they were little!

[nvsmom]

Glad you are getting tested! You have enough symptoms to warrant testing - no doubt about it.

 

Do you have thrombocytopenia? I ask because I have ITP. It was an acute case 20 years ago before I was diagnosed with celiac disease. I have since learned that it is a strong, but relatively rare, symptom of celiac disease.

 

If your test does come back negative, and it can happen to celiacs, then try the gluten-free diet anyways. Two of my three kids have a definite gluten intolerance but they all tested negative. It could be non-celiac gluten intolerance (NCGI) but gluten intolerance when your mom is a celiac? Bah! I'm guessing it is celiac disease.  Anyway, they went gluten-free and improved a great deal. They don't have an official diagnosis but they feel better.

 

NCGI has all the same symptoms as celiac disease except the villi damage - you could have NCGI.    It appears in over 6% of the population, although not many recognize it for what it is because there are no blood tests for it at this time (although some believe the anti-gliadin antibodies tests [AGA IgA and AGA IgG] could possibly show NCGI along with celiac disease but those tests are not very sensistive).

 

Good luck with the tests!