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    Gluten / Fructan intolerance & unsympathetic doctor

    I saw my GP yesterday following 6 months off work with what now appears to be a 'rapid cycling' thyroid which has impacted my bipolar. The GP completely refused my request to be referred to an endo as she said I'd already been diagnosed with Hashimoto's 3 years ago and my blood tests were now normal (the TSH and T3 were well out of range 3 months ago). This despite a psychiatrist and a hepatology consultant saying I must see one.

    So I'm taking matters into my own hands to try and promote better thyroid health in myself. Years ago I identified I was sensitive to wheat and more recently a nutritionist suggested Fructan intolerance (I'm not coeliac - I've been tested). So from today I'm going to eliminate all wheat products and see if I can also eliminate onion and garlic (which will be difficult). Anyone got any tips for doing this? I asked my GP but she wouldn't help and even refused to comment on whether doing this might be beneficial.

    Thanks.

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    Just getting rid of wheat won't help, it has to be all gluten. Ie rye and barley too, which involves careful reading of labels because barley malt flavouring is all over the place. But it is doable .. pure oat biscuits, rice cakes, g free bread from m&s and genius... the reports that it helps are all anecdotal, you will find some on this forum. That's why the gp won't comment, there's no research to my knowledge that shows g free helps Hashis except in the case of celiac. You have to suck it and see.

    I see that you think you are wheat intolerant, not gluten intolerant, but on what basis? the best way to test is through complete exclusion for say six weeks minimum, then eat a slice of rye bread, see if there are immediate physical reactions, see if there are emotional or depressive reactions within 24 hours. Then a few days later some barley malt .. beer will do it .. the same, watch for a while for reactions of all kinds. Then wheat.

    The hard bit is being really careful about gluten so you have excluded it. Basically assume it is in everything except water until you've proved otherwise. Spices often have tiny trace amounts, undeclared, coffee even, packets of nuts from Indian grocers make me react though it is not on the label.

    But are your thyroid levels now optimal?

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    Yes, thyroid is showing all normal, although I still need to get vit D and B12 tests done.

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    But what is normal? What are the actual figures with ranges? Drs will tell you results are normal when they are within their erratic ranges but very far from normal and a trillion miles from optimal.

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    PS I don't know if I'm gluten or fructose intolerant or both!

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    Note that it is also possible to be intolerant to oats - I am - worse than wheat, I come out in a rash from handling them.

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    PS, if your other consultants were nhs and both said you should see an endo then I would write to the gp pointing that out again, mentioning both their names and the times when you saw them, mentioning the evidence for a rapid cycling thyroid impacting on your bipolar, and asking her to reconsider.

    You could cc the practice manager. They are open to consequences if she is wrong, and I think she will back down if this case has a paper trail.

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    Pps you need a good consultant, tell her who you want to see.

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    Ppps I've looked back through your posts and you still don't seem to have a copy of your thyroid tests .. is that right?

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    That is correct. I'm going to see if I can get a copy - I need to go and ask at the reception at my GP.

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    Hi again Nune, sorry, I'm getting a bit OC D here. I found a study by F Dickerson, 2011, if you google that with bipolar and gluten it should come up which finds that people with bi polar do have an increased antibody reaction to gluten. They have raised IGg antibodies to deaminated gliaden, and that might mean you are right, wheat not the others, but personally I would still try the exclusion. You could print that for yr gp if u want to educate it.

    There's another long medical article by Marion Leboyer, 2012 in the journal of affective disorders on bipolar, google will bring it up, which says there is inattention to physical diseases in the treatment of bi polar and a link with auto immune conditions has been known since 1888. Atrophic gastritis, or autoimmune gastritis, is also known to be associated .. this is your b12 problem .. they don't know which comes first, ie, the bipolar symptoms might be a result of the impact of the autoimmune conditions, they just don't know.

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    Thanks for this. I have a copy of my first tests from 3 years ago with the endo but I've literally just left my GP where they REFUSED to give me any test results without a written Subject Access Request (I wasn't in the mood to argue with the officious receptionist). They'll get a SAR from me next week (I'm a data protection specialist btw) and I'll post them here.

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    You've made me giggle - as they don't know what beast they will have unleashed.

    I think you should ask for ALL your electronic records and offer them £10 before they ask for it.

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    Lol I used to be head of data protection for some BIG (70,000+ employee) companies with huge data repositories. I'll eat my GP practice alive if they mess with me :o)

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    An SAR is not hard. You could start by copying the letter I wrote when I applied for my own GP records.

    I applied for the whole lot in all formats which cost £50.

    But if you only want blood tests results you should ask for copies of all records held electronically which will cost £10. You would obviously have to amend the letter.

    nhs.uk/chq/pages/1309.aspx?...

    nhs.uk/chq/Pages/2635.aspx?...

    The letter I wrote - probably not the best of its kind but it did the trick :

    Dear Sir/Madam,

    I wish to make an application for copies of my medical records under the Data Protection Act 1998. I would like to see all of my records in all formats, and also wish to be supplied with photocopies of everything. Please could you let me know what the fee will be and send me your application form.

    I look forward to hearing from you.

    Yours faithfully

    Obviously, add your address and the date at the top and your name at the bottom. I delivered the letter by hand, and stated that on the envelope. They never did send an application form. The letter was all I needed.

    When your records are ready for collection you will need to take proof of identity with you. I used my passport. I can't remember if I needed anything else.

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    Oops, just noticed the bit about you being a data protection specialist. So the above post is superfluous. Oh well...

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    Many thanks. I used to be DPO for a large NHS trust 15 years ago. I dealt with SAR's for mental health records which often needed redacting among other things. I'll get my records without a problem ;o)

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    The SAR can be written on piece of scrap paper - even a bus ticket or a shop receipt (I used to do SAR and FOI training for the nuclear industry), so if they try that one, grab a bit of scrap paper and write one!!

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    I've sent it as an email attachment. Now for the waiting game. I've also written a pretty strongly worded letter asking my doctor to overturn her colleagues decision to refuse a referral to an endocrinologist. They have plenty to think about now.

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    healthunlocked.com/api/redi...

    An earlier post :-)

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    Your GP can't comment on food intolerances because they know SFA about it - even if you have common ones. They also don't believe you when other doctors have verified you do have issues.

    As Aspmama said the only way you can see what you are intolerant do is doing an elimination diet.

    I would do the gluten first and then do the fructan. Why? There is a cross over between the types of foods that contain these molecules and gluten free is less restrictive than fructan free.

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    I followed a fodmap elimination diet years ago and it pointed to fructans so I might start with that actually. I need to lose 6 stone (gained thanks to 5 years on anti psychotics) and a carb free / fructan free Atkins approach would be very welcome as I'm off the meds for the first time and actually quite well for a change.

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    The problem is you are going to have to eat like this for the rest of your life to stay healthy, so the less foods you have to eliminate the better it would be for you.

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    Agreed. I'm going to cut all wheat, onion and garlic for 2 weeks and then do a food challenge by consuming garlic (maybe in a dish - not raw :o) ). I'll know by the result if fructan is a culprit. I'll then do the same with a gluten containing food a couple of weeks after that.

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    Good luck!

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    Your GP sounds like a total a**hole!! Change GP immediately!! Keep changing until you find a good, sympathetic GP! Why would you put up with such an incompetent, ignorant, unhelpful, unsympathetic GP?!

    It's not just wheat, you have to go completely not only gluten free but grain free! Even gluten free grains are high in arsenic and other rubbish. I've been grain free for years and it's totally doable and easy!

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    I wrote a stinking letter to the head of the practice and demanded referral to an endocrinologist. I finally saw one who is investigating a possible phrochromocytoma or even a tumour on my putuitary. She thinks I may not even be bipolar. The issue with my GP is she thinks that because I have been diagnosed with a mental illness I can't be taken seriously. I am also being tested for rheumatoid arthritis.

    Your advice about eliminating all grain is very sensible and is something I am trying to do.

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    Oh and one other thing - my GP said she thinks there's nothing wrong with my thyroid either (I went 18 months without it being tested as the GP dismissed it), fortunately the endo tested it and I'm under-medicated with a TSH of 8.41mU.

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    <3

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    Yes definitely! I did this. Google Monash University Australia and Kings College London. There are also phone apps and books to help you. I identified problem foods and meds, ate small portions of green list foods and kefir, kombucha, sauerkraut, aloe vera and probiotics. My symptoms have calmed down a lot but I may always be sensitive to some foods.

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    Thanks for your reply. Since I originally posted his 2 years ago I have been diagnosed with gluten encephalopathy, only the third person to ever receive this diagnosis, and the first in the UK. My dogged persistence paid off and I got to see a world leading neurologist who basically said I have coeliac disease in my brain, not my gut. A gluten free diet doesn't always help as once the immune system in the brain is activated against itself then its hard to switch it off. However, I now follow a strict anti inflammatory diet and have put every symptom into permanent remission, including the bipolar disorder and I'm off all meds and have been discharged by all my doctors and my psychiatrist. I have also lost 6 stone. While FODMAP's are an issue a low FODMAP diet may never have yielded an improvement in my health as a single breadcrumb can lead to a full relapse. The diet I now follow is called the autoimmune protocol and it quite literally has saved my life.

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