Hashimoto's disease and coeliac

Hello everyone. I'm new to the forum and hoping someone may be able to give me some advice please. I was diagnosed with Hashimoto's disease a few years ago, though I suspect I've had it for much longer. I am not on any medication as my levels have always been 'normal'. I decided to go on a gluten free diet and I did start to feel a bit better. Unfortunately I couldn't stick to it so started eating gluten again. A couple of months ago I had various blood tests done, all of which were normal apart from very low ferritin and a blood test for coeliac which was positive. I was then informed that I would need an endoscopy/biopsy in order to get a proper diagnosis of coeliac. I know that I have to keep eating gluten until this is done, however I am feeling really awful eating gluten again and even if I was to get the endoscopy and it came back as negative for coeliac, I would start eating gluten free again completely anyway, as I now know how much better I feel not eating it. My question is therefore has anyone else been in this position and did you go through with the endoscopy? The way I am feeling at the moment I really want to just stop eating gluten now and not go through with the endoscopy because as far as I'm concerned the blood tests and my symptoms are enough for me to know that gluten does not agree with me.

Any advice on this would be much appreciated!

Thanks,

Kirstine :)

6 Replies

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  • What I know is that blood test is not usually false positive when it can often be false negative.

    And even if you did not have coeliac you should eat gluten free. But having a proper diagnose is never bad so I would take the endoscopy.

    Over here in Finland you get money from government if you have proper diagnose tho it is not a lot.

  • Hi Justiina, thanks so much for your reply. I know I really should get the endoscopy but I'm also absolutely terrified of getting it done as my thyroid is always swollen at the moment & I have problems swallowing so the thought of having a tube down my throat and feeling like I can't swallow or breathe right either is rather scary.

  • I understand. I had endoscopy under sedation. Worked for me even tho I woke up in the middle of it and grabbed the hose and started to pull it out lol. They gave more meds and rest of it went good.

    I remember waking up but it has not caused me any anxiety as I did not feel anything.

  • Thank you - I feel a bit more reassured knowing that but the thought of it still terrifies me!

  • I think everyone feels the same way even though they won't show it. And I think it is natural to feel that way as it is very unnatural to think hey I am gonna swallow a tube , no biggie lol.

    Talk about your fears with the doctor. I did even tho I was going to get sedated. Nurses and doctor were very understanding and friendly. They should understand the difficulty of your situation having swollen gland which causes you to feel bad already.

  • Hi Kirstine, coeliac disease is a very serious condition that will kill you if you don't stick to a fully gluten-free diet. Given that, if you don't get a formal diagnosis, you might be tempted to backslide, as you have done before. I would think knowing you had a very serious condition, for real, as it were, might help you to stay on the wagon.

    Aside from that though, you are entitled to a prescription for gluten-free foods if you are formally diagnosed. Without that diagnosis, you don't get them. These foods cost a fortune, as you probably know, so it is no little thing to give that up and have to pay for them yourself.

    However, the most important thing is that without a formal diagnosis no doctor will take you seriously in the future if you claim to have the disease. This could have very serious implications if you need treatment for something else further down the line, especially if it is coeliac related. It also helps when getting the correct diet in hospitals etc. I have a B12 deficiency with a 'muddy' diagnosis and it has given me nothing but trouble ever since. I wish heartily I had had the full testing done at the time; it would have saved me so many medical fights afterwards. I would therefore recommend you don't cut corners here and go for your biopsy and diagnosis. There is no telling what a biopsy might discover. You should do it and find out just what state your stomach lining is in. It may be the most important thing you ever do.

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