How did you find out you had a gluten... - Gluten Free Guerr...

Gluten Free Guerrillas

10,827 members4,412 posts

How did you find out you had a gluten intolerance?

teyris profile image
16 Replies

For many years I have had a problem eating white bread but when I was tested recently for celiac was told I was fine. I have had hypothyroidism for four years and really struggled with it for a very long time as my doctor was not very helpful. My levels are up and down all the time. I also have an arrhythmia but have recently under the consultants advice stopped taking my Bisoloprolol, Aspirin & Artorvastatin but since then have two blood tests that showed my ALT level was slightly raised. Last week I had a number of tests done including thyroid & celiac, I am awaiting the results but in the meantime I thought I would see if I felt better eliminating wheat. I have done it for a week but the last two days I had salad and afterwards felt almost quesy, no pain in my stomach but just felt pooly. Just really wanted to know what you thought. Would I be better waiting to see what the results are? I can probably get them on Monday but will have to make an appointment to see what the doctor advises from here. Oh yes I am booked in for a liver scan in a couple of weeks because he thinks I have a fatty liver hence the blood tests. I suppose I am falling apart!

Written by
teyris profile image
teyris
To view profiles and participate in discussions please or .
Read more about...
16 Replies
Mike52 profile image
Mike52

Are you sure that there was no wheat or gluten in your salad? Some dressings can contain such things. Bread is easy to remove from the diet but finding were things hide in other products can catch you out.

Hope things work out for you

teyris profile image
teyris in reply to Mike52

We think there may have been some in the cheese or possibly the mayo because apart from the red onion I had the same in both salads ... I dont see why it would make me feel so poorly considering I had only just cut the wheat out and have since had my blood test results which say I am not celiac - who knows....

Katepots profile image
Katepots in reply to teyris

Onion is in a group of foods called nightshades which can be a no go for people with thyroid disease.

I react to Onion badly.

Looking at your other posts id say you were under medicated.have you thought of adding T3 to your Levothyroxine? Or just trying NDT?

There's a great book called The Immune Sysrem Recovery Plan by Susan Blum M.D

Highly recommend as helps you to eliminate all the foods which cause problems.

Also get your thyroid antibodies tested you could have Hashimotos in which case gluten free is a must.

teyris profile image
teyris in reply to Katepots

I have never had a problem with raw onion before but it was a very strong onion but then I had the same reaction the following day with no onion. I didn't think I would have such a reaction after just a few days of eliminating gluten.

When I was feeling at my worst I tried to get the doctors to sort me out but they weren't interested. I looked up what I could and eliminated lots of things that can affect thyroid. I am sure there is still lots I don't know.

I will take a look at the book and ask about the other tests.

Do doctors ever advise gf if your test come back 'normal'? My acupunctist said on one of my first visits that I have a blood deficiency and told me to take iron tablets and also advised gf.

Katepots profile image
Katepots in reply to teyris

If you have thyroid antibodies this means you have Hashimotos Throditis which is an auto immune disease. You have to be gluten free to feel at all well with Hashimotos. Research leaky gut.

My dr has never advised gf which is ridiculous although it was me who found out I had Hashimotos and put myself on NDT.

Gp's on the whole are not interested or very ignorant when it comes to thyroid disease.

teyris profile image
teyris in reply to Mike52

I found out afterwards that there was wheat in the dressing so I won't be having that again 😕

Marz profile image
Marz

Having a low thyroid can cause you to have low stomach acid - which may be the cause of the feeling you had after the salad.

What tests did you have for the thyroid and what is your treatment ? I have Hashimotos and have been on the Thyroid Forum here on HU for over 4 years. So have learned a thing or two.

The correct Thyroid testing is TSH - FT4 - FT3 and the Thyroid anti-bodies - Anti-TPO and Anti-Tg. GP's rely too heavily on the TSH test which tells you diddly squat about the thyroid and how it is performing.

If your GP will not request the correct testing you could have them done privately through Thyroid UK with Blue Horizon. Kits are sent to your home.

thyroiduk.org.uk/tuk/testin...

Being Hypo causes the liver to slow down with its de-toxing and cleansing that happens naturally all the time. Also raised cholesterol is a sign of Low Thyroid. In the past - in the early 70's and before Thyroid testing - anyone with raised cholesterol had their thyroids treated :-) Being optimally treated for the thyroid will balance things out. We need cholesterol for the well being of all hormones in the body and the brain is over 25% cholesterol.

Blood pressure issues are also linked. Sounds to me as if you are not being correctly treated for your thyroid.

teyris profile image
teyris in reply to Marz

I have only had TSH levels tested and my last two were

2.9 on 8 January 2015 range 0.35 - 4.5

2.51 on 27 July 2015 range 0.27 - 4.20

the ranges must have changed over the last year

I have never thought that my doctor took me seriously and went to see an endocrinologist privately when I was feeling very down and poorly with it but after my initial appointment and despite me chasing for follow up info/appointments they never contacted me again - the only good thing about it was I never paid the £260 for the initial consultation mainly because they never invoiced me!

My chiropractor did kinesiology on me and told I was deficient in D3 and told me to take a supplement which I have done for a couple of years now and I do think it has helped. I gave up with the doctors although I do find that if I see a locum or one that doesn't know me they take more time to listen and do more for you hence the blood tests I have recently had because my ALT was slightly raised.

My blood pressure has been up a bit (for me) lately but not all the time.

This might seem a silly question but if someone is hypo does that make it Hashimoto?

I still feel there is so much more to this that I dont know

Marz profile image
Marz in reply to teyris

You only have Hashimotos if you have Thyroid Anti-bodies attacking the thyroid. It would appear you have not had yours tested. I mentioned them in my earlier post to you and I also gave you the link to Blue Horizon for Private Testing which will include everything you need if you select Profile 11.

Hashimotos is the mot common thyroid condition in the world - so should be tested routinely - but hey they would prefer to make more money prescribing you pills and potions without seeking the ROOT cause.

To understand your test results below - go to the website labtestsonline - I will try and find the link for you.

Also read and read this website thyroiuduk.org.uk

teyris profile image
teyris in reply to Marz

No I haven't had mine tested, when I went for my appointment yesterday he basically said that there wasn't anything wrong with my results and liver problems are not connected with thyroid problems, my TSH was fine and the doctor I saw before had overreacted. He said my celiac test was fine so there was no reason for me to go gf although if I wanted to try it for two weeks and see how I felt then I could. Sometimes I wonder why I go to the doctors!

Marz profile image
Marz in reply to teyris

ncbi.nlm.nih.gov/pubmed/754...

Yes they do show their ignorance from time to time as the above link to a piece of research about the liver thyroid connection reveals.

It also mentions on the NHS website that sufferers of PBC should have their thyroids checked.

You could have your tests done privately through Blue Horizon - I posted the link for you in an earlier post ...

I would still get those anti-bodies checked - if positive then being GF will be a huge help. Also many other parts of the body are affected by gluten causing inflammation :-)

teyris profile image
teyris in reply to Marz

I will keep in mind about having the blood tests done but unfortunately can't really afford it at the moment :( I do think its pretty sad that with thyroid deficiency being such a common thing that doctors as so dismissive of it. I am trying the GF anyway so will see how things go. I get so frustrated when I go to the doctors that I tend to not bother unless I really have to which I suppose is not really the attitude to have. I found out a lot of info about Thyroid myself but I think I said before there is so much I still dont know.

Would my doctors possible do the anti-bodies check? What reason could I give to request it?

Marz profile image
Marz in reply to teyris

You could say you wish to know if you have auto-immune issues - so you can take action and prevent other auto-immune illnesses affecting you which in turn will cost the NHS more :-)

What did you think of the research paper I linked for you ?

Be firm and polite - now that is the tough bit :-)

teyris profile image
teyris in reply to Marz

It was very interesting, I just get the impression that doctors are not really that interested and they certainly dont like you finding things out for yourself. I will try that when I go back next time but after yesterday I won't be rushing back ha ha! My scan is in two weeks so I will go after that to find out the results. At least with a blood test the receptionist will print them off rather than you having to go and ask the doctor for it. I have found with my surgery that the never give you the correct information over the phone so I always get a print out now

teyris profile image
teyris

This is the blood test results

Serum protein Electrophoresis - No monoclonal band detected. There is evidence of beta/gamma bridging consisted with hepatic disease

Serum cholesterol 5.1 range 3.5 - 5.20 mmol/L

Serum HDL cholesterol 0.99 range 0.90 - 2.10 mmil/L

Se non HDL cholesterol 4.11

In vascular disease, aim for a greater than 40% reduction in Non HDL cholesterol

Serum cholesterol/HDL ratio 5.2

Serum triglycerides 1.6 range 0.50 - 1.86 mmol/L

Serum LDL cholesterol 3.4 range 1.40 - 4.00 mmol/L

! Liver function test - noted a/w USS abdo and protein electrophoresis

! Serum ALT 41 range 10.00 - 36.00 iu/L

Serum alkaline phosphatase 74 range 30.00 - 130.00 iu/L

Serum total bilirubin 11 range 0.00 - 21.00 umol/L

! Serum total protein 82 range 60.00 - 80.00 g/L

Serum albumin 45 range 35.00 - 50.00 g/L

! Serum globulin 37 range 20.00 - 35.00 g/L

! Immunogloblins - noted a/w electrophoresis

! IgG 17.5 range 6.00 - 16.00 g/L

! IgA 7.5 range 0.80 - 4.00 g/L

IgM 1.5 range 0.50 - 2.00 g/L

Plasma glucose 4 range 3.00 - 7.80 mmol/L

Serum calcium 2.41 range 2.10 - 2.55 mmol/L

Serum adjusted calcium conc 2.33 range 2.10 - 2.55 mmol/L

Serum inorganic phosphate 1.23 range 0.80 - 1.50 mmol/L

Serum alkaline phosphatase 74 range 30.00 - 130.00 iu/L

! Serum total protein 82 range 60.00 - 80.00 g/L

Serum albumin 45 range 35.00 - 50.00 g/L

! Serum globulin 37 range 20.00 - 35.00

Serum TSH 2.51 range 0.27 - 4.20 mil/L

HEPATITIS B S ANTIGEN - satisfactory

I have put the results as they have been printed from my doctors. My previous thyroid test was 2.9 back in January 15 and the range then was 0.35 - 4.5.

If anyone can throw any light as to what it all means I would be most grateful :)

If you need any other info just let me know :)

To follow on from that I have just had a call from the doctors......they want to see me today! Unfortunately the really helpful doctor who got this ball rolling has moved on as he was training so all I can say is watch this space I will let you know how I get on

teyris profile image
teyris in reply to teyris

Well apparently there is nothing wrong with my test results and the doctor I saw previously overreacted, so I said why did the surgery phone me and tell me to come in today (as in asap) he said basically they had at least 90 letters with patients to contact about results so what is the best way to do it? phone or send letters. To my mind if it wasn't an issue and I am waiting for a liver scan then it would make more sense to wait until the result of that came back but hey ho what do I know. He also said that there was no relation to thyroid and liver function and if I wanted to go gf for two weeks to see if I felt better I could. I really wonder sometimes why I bother with the doctors :(

You may also like...

Lactose Intolerant how do you find out?

products to see what happens, or were you tested? I have read that there is a breath test that...

Did you try going gluten free before your celiac diagnosis?

lifestyle choice. I have had some gut symptoms (pain, diarrhea, gas) for a few weeks now and I...

Ibs or gluten intolerance?

Hi all, I have an appointment at the doctors tomorrow originally was to discuss possible IBS but a...

Gluten intolerance?

I was dying out there. Having seen my GP I have had all the blood tests done for the relevant...

gluten intolerance and yeast sensitivity?

there find you have issues with yeast/yeast extract once you realise you have gluten problems and...