Re-introducing gluten for biopsy

Hi all,

My gastroenterologist wants me to reintroduce gluten for at least four weeks and then put a camera down my throat to take a biopsy. When he first told me, i started crying as i was scared. Its quite sad but yes im scared of the effects of reintroducing gluten.

I have hashis and have been gluten free and mainly grain free for over a year...a lot of my symptoms have reduced greatly but im still having issues. The main thing is a pain in my right side for well over a year. Other things are low testosterone, no sex drive, cow pat stools and some other symptoms which could be due to low testosterone...but he thinks the stools and pain in side could be related to celiacs. Pre gluten free symptoms included bloating, extreme anxiety, brain fog, sweat hands, heart palps ect.

Im concerned it going to come back negative as it might not be celiac but an intolerance due to hashis. Also why would pain in side be due to celiac if i havent touched wheat or gluten.

Im really worried about reintroducing gluten so much its causing me sleepless nights. I guess i would love to hear your thoughts on reintroducing gluten, have you done it?....what were the results? Were you treated differently with diagnosis? Consult said he would check my bones and more if positive.

If i do is there any gluten foods i should introduce first to help with the transition.

Any help or guidance would be appreciated.

13 Replies

  • You don't have to do anything you don't want to do. And having a test to confirm something you already know strikes me as pointless and a waste of hospital resources. A diagnosis of coeliac (or not) isn't going to solve the other issues, so why push to get the words written on your medical records? Seems to me like an excuse not to undertake other tests first - as if he's hoping to be able to write you off with IBS (a bucket diagnosis).

    Testing for coeliac is a pretty pointless exercise once you've had symptom relief from going gluten free.

    Are your thyroid hormone levels optimal yet? Gut problems are a side effect of undermedication.

  • Hi, thanks for the reply. What other tests do you think i may need?

    I have just started seeing an endo, who has taken the latest tests, including all thyroid tests, vitamin D and cortisol...results back in April.

    Previous tests show my levels arent optimal. Endo instructed me to take 25mg one day 50mg the other (instead of 25mg daily aa he said was a placebo effect) however my PMT symptoms were worse thab ever so i stopped taking thyroxine for last few weeks.. I think i need to see a private endo as im completely lost with all of this.

  • Hi Em-Lou

    When you posted a year ago it was clear you had autoimmune Hashimoto's (autoimmune thyroid disease), that you definitely needed levothyroxine and... weren't on nearly enough Levothyroxine. 50mcg is a starter dose, and when it isn't enough for your needs, makes you feel worse rather than better. It's a big enough dose for your thyroid to stop producing any thyroid hormone for itself - but not enough to make you feel "normal" - not the amount that a healthy person's thyroid would produce. A replacement dose is usually much higher than that. That's why stopping makes you feel better, because it forces your poor clapped out thyroid (not its fault it's being attacked by antibodies) into trying to make thyroid hormone, and actually manages to pump out slightly more than you were putting in with 50mcg of levothyroxine. But even though it manages to make slightly more, it's still not enough, so you're left feeling awful, tired, constipated, depressed, etc. The more your thyroid gets flogged, the sooner it'll give up altogether - it's slowly being destroyed by antibodies.

    You need levothyroxine - but more than 50. You'll need to start back on 50, but after 4-6 weeks a raise to 75mcg would be advisable, then another raise depending on how you feel 4-6 weeks after that.

    Re the tummy issues, you might find they resolve all by themselves on the right dose of Levo and steering completely clear of gluten.

  • Thanks for the reply, which makes it clearer why i feel better stopping levo....but why do i feel worse when i increase the dose?

    Ive tried and my PMT is extremely bad, my anxiety is unbearable and i start crying for no reason and truly feel like giving up on life because the symptoms are that bad - and only when i increase levo.

    I do think i need something as since stopping levo my energy levels have dropped dramatically and my bones hurt.

    Could it be a different treatment may be best for me eg. T3 or NDT? Should i order tests from blue horizon including FT3.

    Im will restart taking my meds again as that is the advice im receving from the board and consultant. Im 27 and dealing with this for 10 years, its consumed my youth determined not to let it continue longer - thanks again for responding.

  • I refused to reintroduce for the sake of a test when I felt better gluten free, it's in my notes as untested coeliac but I don't get prescription bread etc ..... Hardly a big deal as I barely eat that anyway!! I agree with others pointless waste of money and heartless discomfort on your part when you've proven the diet change has helped now they need to look at other issues that could be causing your current symptoms x

  • Hi Olly,

    Im really struggling on what to do. Im leaning towards doing what you did and refuse the test as even if it comes back negative, i will still cut out gluten as it causes me symptoms. On the other hand i feel they will take me more seriously if i get a positive result. Also im thinking if they put a camera in me...they may find out whats really causing the pain in my side. Decisions, decisions.

    Also i guess id like to know if i do have coeliac OR gluten causes issues for me due to its molecular structure being similar to my thyroid so causes an attack.

    E.g my colleague was laughing saying what if it comes back negative and youve been saying you have all these symptoms....kind of made me feel unseay.

    Thank you so much for your input.

  • Your colleague doesn't know what he/she's talking about. Non Coeliac Gluten Sensitivity is now a recognised thing. A negative coeliac test wouldn't mean you aren't sensitive to gluten - if only it was that black and white.

    I hear what you're saying though and I know I'd be wondering what to do too. But I know enough about what happens when I eat even a tiny bit of gluten to know that I'm never purposely going there again - accidental exposure is horrible enough.

  • Yep me too - accidentally had some a few weeks back and it was grim the trout of having to do it for any period of time when it's taken so long to feel well is quite frankly soul destroying!!

  • Hi where about is the pain in your right side please? I have pain under my ribs on the right side and is due to Gall stones. Feels like sharp pins sticking in me sometimes. This only took a scan to diagnose. x

  • I had liver complications at the start of my journey which gave me a tight stretched pain under the ribs - apparently common when we are reacting to something and the liver is struggling to cope 😕 I have some weirdo virus thing CMV which apparently was the reason I went downhill so quickly with glandular fever that then led to ..... Kaput thyroid

  • I hope you can get this sorted out real soon. x

  • Coeliac uk recommend eating gluten for least 6weeks and you need to eat equiv of 6slices bread daily so quite a lot. This is so they can see the damage it causes. It does sound ridiculous doesn't it! My GP years ago didn't know this so I went GF prior to testing and was consequently negative. Since then I have refused another test as will not be eating gluten again as it makes me too ill but it's a personal decision. If you go down this path be prepared to face criticism as some people think a "medical label" the be all and end all (my hubby even tries to get me to retest occasionally!) If you ARE diagnosed you will be offered help fm dietician, blood tests for vitamins/minerals and maybe a dexa scan for bones. I have had these anyway although refused dietician as capable of getting that advice myself. You might need to be more proactive 're getting help fm your gp.

    Are you seeing and endocrinologist too? Maybe your thyroid levels aren't right yet as this can cause a host of problems. Thyroid UK has a list of good endocrinologist that they can send you (need to email Louise Warville at thyroid uk)

    I think I'd you can't decide what to do you need more information.

    I wish you luck x

  • My endocrinologist and GP have both said that I should be tested for coeliac disease as I have continuing and serious absorption problems. I would like an official diagnosis, but I have already been strictly gluten-free for 18 months now and really do not want to take the backward step of consuming gluten for 6 weeks. Both doctors acknowledge that it would probably make me feel very unwell, and are definitely not pushing me to get tested.

    My GP has said that I should carry on as I am (being gluten-free), but to be extremely strict about gluten as if I was coeliac - to watch cross-contamination etc. I was told that I would get more checks on me with an official diagnosis (bone scans, for instance) but I actually don't have any faith in "the system" any more to manage my health so I am not going to put myself through the 6 week trauma.

    I guess it all comes down to how you feel you would manage over the next few weeks - people do manage it. I supposed it all depends on how badly you need the diagnosis.

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