Log in
Gluten Free Guerrillas
9,069 members3,711 posts

Coeliacs?

Hi everyone,

Hoping someone can help.

I've been gluten free for 10 years now, however if I do eat something with gluten by mistake I feel so unwell and stomach is incredibly painful. Doctor wanted to test for Coeliacs, she advised to eat gluten for two weeks and take the test. Everything I read online said you need to do it for 6 weeks, but I was so ill that I just couldn't manage 6 full weeks and doctor said two weeks would be fine.

Had my blood test after the two weeks and the results are:

IgA - 4.41g/L

Anti-tissue transglutnase lev 2.6iu/mL

What does this mean?

And can I really trust the result by having gluten for just two weeks when all the guidance is 6?

Any help/thoughts/advice really really appreciated

Confused and concerned

Jess x

12 Replies
oldestnewest

Hi jessieo! this is what @Sleepybunny said to me on my post about blood tests ( healthunlocked.com/pasoc/po... ):

"Total IgA and tTG tests are tests for Coeliac disease. How much gluten are you eating at moment?

NICE guidelines recommend that a person having tests for Coeliac disease, eats gluten more than once a day for at least 6 weeks before tests are carried out.

See Section 1.1.4

nice.org.uk/guidance/ng20/c...

People who have stopped eating gluten or have reduced amount of gluten they eat and don't want to start eating it again, should be referred to a gastro specialist.

See Section 1.1.5"

Reply

If you have been completely gf for 10 years then i would assume your readings would be negligable at best. That is why some people are unfortunately misled by gps telling them that the coeliac has gone! It doesnt go only if you keep gf.

So my guess is that despite you only doing it for a couple of weeks then your body was already showing reactionary signs.

1 like
Reply

Thank you, this is really helpful

Reply

You can go into remission with Coeliac Disease, I was diagnosed in 1955 long before gf foods were even thought of, my diet was totally wheat free. In 1962 I had a capsule biopsy which was at that time showing no gut problems. I was weaned onto normal foods and stayed on them. Because of a divorce I had an endoscopy in 1990 nothing was found but in 2007 having been subject to trauma my endoscopy was positive, even when I gave up gluten eight weeks prior to endoscopy. The gf foods until quite recently contained 200 ppm of gluten so in theory you were feeding coeliacs gluten, however today gluten has been replaced by a formaldehyde releaser.

Reply

Hi Jess, I don't know if 2 weeks is long enough for a positive test however trying it was for you so here's a guide but bear in mind this is for someone who has been ingesting gluten for longer.

It also depends on how much gluten you ingested for the 2 weeks so there are many variables. But at the end of the day if gluten is affecting you so badly that 2 weeks is more than enough then that speaks for itself and you have to decide if a diagnosis is worth the hassle.

So good luck and here's the IgA and IgG references and I hope it helps as you may have a weak positive:

tTG ANTIBODY, IgA

<4.0 U/mL (negative)

4.0-10.0 U/mL (weak positive)

>10.0 U/mL (positive)

Reference values apply to all ages.

tTG ANTIBODY, IgG

<6.0 U/mL (negative)

6.0-9.0 U/mL (weak positive)

>9.0 U/mL (positive)

Reference values apply to all ages.

4 likes
Reply

Thank you so much Jerry for your reply, I really appreciate it!

1 like
Reply

I would question what the point of getting a diagnosis is anyway? There is no 'treatment' for coeliac disease, just a non gluten diet.

2 likes
Reply

Two things; one you get GF food on prescription and two, you get otger checks such a bone density and other related auto-immune conditions like lupus and diabetes.

So for the GP who gets paid differing amounts per patient by the NHS depending on their health condition, the diagnosis makes a huge difference. And for the patient, the management is slightly different in terms of regular checks etc.

Basically there is a world of difference between coeliac and gluten intolerance on what it means for your general health.

But if you have been GF for ten years, I would not expect you to be able to tolerate gluten at all and I would expect you to find the process really painful. A person who was not intolerant before would become so through the exclusion of it from their diet, so re-introduction would be tricky as a body would need to learn how to make new enzymes etc. This is why diagnosis or rulung out of coeliac disease is so important before you exclude gluten, as it is almost impossible to reintroduce unless you are asymptomatic of intolerance....

Reply

Those still receiving prescriptions are aware they're currently on death row. It's likely they will vanish soon.

Not known Lupus and Diabetes being usual tests following diagnosis.

1 like
Reply

I certainly didn't get any of those tests but the bone density was helpful. Was osteopenia 3yrs ago now normal after calcium treatment. To be honest I don't buy anything on prescription now as it's getting so much better in the supermarkets it doesn't save much unless you get free prescriptions.

Reply

Been following this with interest as when had first blood tests done ( purkiss.com/blood_test_resu... - click to enlarge image) doc said "wheat was ok" to which I replied "well I don't really eat wheat". He asked if I was likely to eat much over the next couple of weeks and I said probably not because although I'd been eating some lately it made me feel unwell.

I've since given up Gluten again & seeing the doc again in a couple of days on Weds as I asked for more blood tests including Vitamin D which I'm seemingly deficient on. Also Immunoglobulin M is below reference limit and Wikipedia says this can also be a sign of coeliac:

en.wikipedia.org/wiki/Isola...

Others have mentioned I should ask for "full vitamin and mineral screen...butexpect to be refused (not so sure many GP’s offer this- but can get from private testing companies). GP should be able to do full iron panel, magnesium, calcium, potassium (the main 'culprits’)."

Hoping Vitamin D supplementing will help, B12 injections worked like a treat before and am definitely a lot better than I was but still incredible lethargy & feel like it's "sliding away" & don't want to end up with SACD again, that was scary stuff!

Here were my other results from the latest tests:

Folate - 16 ng/mL [4.0 - 20.0] - it was 5 last time so maybe the few folic acid tablets I took increased that, I dunno, I only took about three and stopped about four days before the tests, and although they were 5mg I though you peed it out!

Ferritin - 145 ug/L [24.0 - 336.0]

TSH 0.88 mu/L [0.3 - 5.6]

Serum total 25-hydroxy vitamin D - Below range - 35 nmo/L [40.0 - 250.0] Comment: "Advise patient that they treat with over the counter supplements"

I did read this on the FB forum & identified with the symptoms of adrenal fatigue due to stress & stuff! ~ "All doctors only check the storage Vitamin D (25-Hydroxy) but not the active Vitamin D(1,25 Hydroxy) they never check. My storage is low at 21.6 but my active is high at 76.5 due to Vitamin D3. It caused my adrenal fatigue."

Free T4 - 12.0 pmo/L [6.3 - 14.0]

IgA 0.3 u/mL [0.0 - 6.9] - am not eating gluten anyway so presume this was pointless

IMMUNOGLOBINS

A - 1.89 g/L [0.8 - 2.8]

G - 6.33 g/L [5.4 - 16.1]

M - 0.47 g/L [0.5 - 1.9] - Below low reference limit

Reply

My doctor told me to drink beer amd have sandwiches. I had one beer amd said f this. I know how gluten makes me feel, what good is feeling shitty to hace a doctor tell me I will feel shitty if I have gluten?

Reply

You may also like...