Did my GP really test me?

[Numberone1]

I have hypothyroidism as did my Aunt who has been diagnosed with coeliac disease over the last couple of years.  I only have memories of her being practically crippled with joint pain but nobody seemed to know what caused it. Once she was diagnosed coeliac she has some pain but nowhere near as bad ie she used to have to use crutches or splints on her legs and things to help turn taps on etc.  Nothing like that now. 

Since I was diagnosed hypothyroid I also started to develop very bad pains in my joints and as I related it to my thyroid, I paid to see a consultant and found that my taking a different thyroid medication, the pain was relieved a bit.  However, it is back with vengeance and thinking of my Aunt and her situation I started to remove gluten from my diet.  Then I would add it back in and find the pains were worst again.

I queried this with my doctor and with no hesitation he said he would do the blood test which I was a bit surprised at.  The results came back and he said there was no sign of coeliac disease and I took that at face value.  I hadn't avoided gluten before the test because I know that can affect the result.

I wasn't actually aware of how the blood test was done but Ive just read that the way they do it is to test for antibodies.  I have been having private blood tests done for my thyroid and at Christmas I also had my antibodies tested which came back very high.  I believe there's nothing thaat can be done for them so haven't pursued it with my GP.

However, having read what I have today about antibody testing and as I have actually been eating alot of gluten since Christmas, leaving me in alot of pain (I don't get stomach pain as such, just a kind of ibs and I am definitely not losing any weight), Im beginning to wonder if he ever did the test in the first place.

What do you guys think about this? Is it just an antibody test he would have done and if so why didn't he tell me they were high?

[Regalbirdy]

Hi 

Sorry to hear you're having problems. I would suggest the quickest way to find out if your GP has tested you is to ask the receptionist what the exact result of your TTG test was (obviously give them the approximate date of the test to help them find it!). 

If the receptionist doesn't want to give it to you then you may need to make an appointment to ask your GP the same question. Remember you want the numbers and the range.  If it genuinely is negative then I would follow up by asking if you have an IgA deficiency. You may find this link useful:

coeliac.org.uk/coeliac-dise...

Good luck!

[Numberone1 in reply to Regalbirdy]

Is the TTG test different to normal antibodies that I would have had done.

[humanbean]

A few things :

1) Thyroid antibodies and antibodies to gluten are not the same. There are lots of different kinds of antibodies, and being positive on one kind doesn't automatically mean you will be positive on another.

2) Being negative for antibodies to gluten doesn't necessarily mean you won't benefit from going gluten-free, nor does it guarantee you don't have coeliac disease. I had a negative coeliac test but I've benefited a lot from going gluten-free. I had symptoms that were indicative of gluten ataxia, and although they haven't gone they have vastly improved.

3) Being low in nutrients is a common problem in hypothyroid people. The common deficiencies are vitamin D, vitamin B12, folate, and ferritin/iron. Getting my vitamin D levels up to optimal helped my muscle and joint aches and pains. It's worth being tested and supplementing to bring your levels up to optimal. Just being anywhere in reference range isn't enough.

[corsaUMM]

Follow what others have said but if you feel better being GF carry on. The only one you have to prove it to is yourself.

[Numberone1 in reply to corsaUMM]

I know what you're saying and thank you.  However, I know that coeliac disease, if untreated, can lead to Stomach cancer and I don't want to take that risk ie Im not as obsessed about avoiding gluten as I would be if I actually had a coeliac diagnosis.  I also want to know I can warn my daughters too as it can be hereditary as can type 1 diabetes (one of my daughters has that).

[Hidden in reply to Numberone1]

I feel pretty much the same way about getting diagnosed, or not, and I have hypothyroidism and RA - currently in remission. I've been off gluten for five years but not as vigilant since getting myself tested three years ago with negative result. They told me I could be gluten free as it was an antibody test. Wrong of course! I also tested myself for vitamin D and was deficient. My GP prescribed AdCal D3 which I've taken ever since and never had clinical depression or synovial joint pain since. But I do have this small fibre neuropathy that seems to be progressing and IBS type symptoms. So I'm packing myself with gluten until Coeliacs is ruled out and then I'll return to my gf diet -.this time I will do it properly. 

My GP did say that some people have non Coeliacs gluten intolerance and this can go with autoimmune diseases. Since I've been back on a full gluten diet I've felt sick, starving, terribly bloated, low mood, fatigue and return of stiffness and joint pain. Basically I have inflammation in my blood always - sometimes high. I reckon gluten causes an increase in inflammatory markers and I can't wait until I can stop eating it 100% one way or another. Like you I'd like to get it medically diagnosed if possible but the price feels very high just now. 

[Hidden in reply to Numberone1]

You may not have coeliacs, but did the GP test for wheat/gluten intolerance? I was very sick and asked for tests to be carried out on my thyroid and wheat/gluten. I was correct, I have hypothyroidism and gluten intolerance and tested positive to carrying the coeliac gene. (i had been off wheat for about 3 months, so they couldn't confirm that I was coeliac or not). However if I accidentally get glutened (consume gluten), I get horrific pains in the chest and right through my digestive tract and very badly constipated. Coeliacs can eat marshmallows or other foods which contain glucose syrup from wheat, I cannot. Even 1 marshmallow will cause me immense pain and suffering. Coeliacs can use skin & hair products which contain wheat products ..... I cannot. I get itching and burning wherever the product has landed on my body and it will come up in a dry scaly itchy rash or bumps under the skin. I hope this helps a little.

[liver-bird]

Hello Numberone 

I am sorry to hear you are having problems. Firstly, autoimmune problems seem to come in clusters and if you have one, you are more likely to get another.  Coeliac, like hypothyroidism and pbc is an autoimmune condition. 

I understand there are two tests for Coeliac - the first is a blood test which looks for coeliac antibodies and the second is a biopsy done by passing a small tube down to the small intestine and taking a little sample for analysis.  The blood test is not conclusive, it is possible to have coeliac disease without having antibodies in the blood.

I am currently being tested for coeliac - I have the antibodies and am waiting for an appointment for biopsy so this is close to my heart.  Like you I feel much better when I am gluten free but have to bite the bullet soon and start taking gluten for 6 weeks before the biopsy so they can get a firm diagnosis.  They call it "the gluten challenge" because you have to actively make yourself unwell.

You should ask for a referral to a gastroenterologist for a biopsy to see whether you follow your aunt and are coeliac.

Let us know how you get on.  Best wishes  Diane

[Numberone1]

My daughter has type 1 diabetes which is another auto immune condition so we have it in the family definitely.  Im just concerned that the doctor said he tested and maybe he didn't?  I have a definite difference in health by avoiding gluten.  I spent a couple of months not being so careful ie Christmas and 2 holidays in the US in December and Feb where it was impossible to avoid.  If that wasn't a gluten challenge I don't know what was.  I not only had bad joints but I was breathless and had visual migraines, all things I get if I overdo it on gluten.

[RodeoJoe in reply to Numberone1]

The gluten challenge includes an endoscopy with biopsy to diagnose the disease.

No one can know if your Dr really did do the test however it's a strange thing to claim to have done and not actually done. My hunch would be that yes, he did do the test.It's my understanding that sometimes the blood test isn't 100%. Either way just give up gluten if it makes you feel better.

Your daughter should take the test herself if she's concerned.