Hello, I suspect that I may have coeliacs disease and I am considering buying one of the blood spot tests that you can do at home. Has anyone tried one of these tests? Are they reliable? Would you recommend them?
My symptoms are bloating, wind and constipation, fatigue, muscle and joint aches and pains, acne, sugar cravings, brain fog, numb and tingling hands and feet. My ferritin and B12 are both at the bottom of the range. I also have an underactive thyroid, which I thought was the cause of my symptoms, but I've noticed recently that I feel worse when I eat bread.
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Woochan
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... you should also mention that the anitbody tests are also not always reliable either. It depends on what panel the doctor chooses to order and many other factors. There are potential false negatives. There are other options... DNA testing, biopsy, etc. Getting a proper diagnosis is not always easy or straight forward.
Anti-tTg is around 95% sensitive and similarly specific. A combination of that and anti-endomysial racks that up by a few percentage points. But you're right, some people do get false negatives, particularly if they have a condition called IgA deficiency (which occurs in around 6-7% of coeliacs).
I totally agree. I was first tested for systems similar to yours by a holistic therapist on a computer. The results were that I was not allergic to gluten but to a load of other foodstuffs. This cost me a lot of money & continuing pain & discomfort. When I finally was tested in hospital the xrays showed that my villii were totally flattened & I was a coeliac.
It really is not worth messing with your health. You are too important!
Thanks, I thought that was probably the case, but I was trying to put off going to my GP as she already thinks I'm a hypochondriac due to me going to see her every other week trying to work out why I've been feeling terrible for years.
It does take all your efforts to keep going back to discuss your health with someone who appears to be writing off your symptoms. However if you're doc hasn't carried out any of the standard tests then you are quite reasonable to expect some help in finding out what's wrong.
How do you know that your Ferratin and B12 are at the bottom of the range? Did your GP carry out a blood test for this? If so then what action is being taken to establish why you have these results. It could be that you have Pernicious Anaemia or B12 Deficiency. Symptoms are the same.
Low ferratin will also certainly make you feel grotty as will your thyroid problems. Would suggest you keep a food diary for about a week to ten days and make a note of your symptoms after you eat bread/gluten. Then go back to your gp, with your diary and your results. You can then reasonable ask for a Coeliac blood test. Just make sure you are eating plenty of gluten containing foods prior to the test or it won't be worthwhile. Good luck.
My GP tested my B12 and Ferritin recently (at my request). I have been deficient in both in the past. My B12 was 156 (range 150 - 900), but my GP refused to give me injections because I'm in range. I was vegetarian for 20 years and started eating meat again a year ago because my ferritin wwas low. Since then, despite taking iron supplements, my ferritin has crept up a bit, but still near the bottom of the range and my b12 has gone down, so I think there is definitely an absorption problem. I am taking sublingual b12 supplements now to try and get my levels up a bit.
I like the idea of a food and symptom diary. It could help me to see if there's a connection and would give me something to help me convince my GP if there is one.
Do persevere with your Dr you're at the low range of B12. It actually is a very cheap injection and costs pennies as any nurse will tell you. So maybe your Dr just isn't very clued up on B12. As you probably know B12 is often low in veggies so given that you've started eating meat it's still low. Do also eat lots of healthy veg that contains iron eg spinach. More info here: nhs.uk/Conditions/vitamins-... Handy tip reference taking iron & not taking tea / coffee around the same time.
Keep at the food diary and feedback. Often it takes coeliacs many visits to the GP before they get a diagnosis. This can happen with other conditions as well. Do ask your GP for the ttg and enzyme blood test for coeliac disease.
the biopsy is the best way to diagnose coeliac. my first one i was scared so i told the hospital this and he arranged a stronger relaxent for me and i remember nothing about the test. i was told i had coeliac the same day and a week later i was "normal" again take iren's advise.she really knows what she is talking about.
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