Gluten challenge and weight loss.

[sobs1962]

Hi there, all you lovely knowledgeable people. Just wondering, how long a gluten challenge should go on for, as I'm currently losing at least one meal a day, down the toilet. I was weighed in hospital at end of first week in January and weighed 55.2kg, meaning I'd lost over 5kg in the last 3 months without trying to and I worry that the NHS, will allow me to become skeletal before doing anything, as I have severe mental health problems, I feel like they're not listening to me and just being completely dismissive. Was tested for coeliac disease back in October 2021 and apparently the antibodies need to be 10x top of range figures for a positive result and mine wasn't. Needless to say, if I keep losing one meal a day, I will continue to lose weight and I'm genuinely not sure what the NHS regards as acceptable amount of weight loss. I feel dismissed and as soon as they see I have BPD, their attitude is " it's all in her head". Am keeping a food diary and also including number colour and consistency of bowel movements.

Really not sure if I should just go gluten free without a coeliac diagnosis or just keep going and hope I don't end up seriously underweight.

[Cooper27]

You need to eat gluten at 2 meals per day for 6 weeks for a coeliac test.

I'm confused what you mean by the 10x thing though. Were your antibodies over range in October, but just not substantially over?

[sobs1962 in reply to Cooper27]

I've read that the test result needs to be 10 times greater than the top of the range figure, before it's considered a positive result,my antibodies were within "normal range", so considered a negative test.

[Cooper27 in reply to sobs1962]

Ok I think I understand.

Basically, the test range is something like 0-7 (?) But if your result comes back over that range, you should be referred for a biopsy to confirm (so a result of 10 would warrant a referral).

If your result is over 70, some doctors may be happy to diagnose coeliac on blood test alone, without you needing a confirmatory biopsy.

I think this might be where you're getting mixed messages, so for simplicity:

0-7 = negative

7-70= maybe coeliac

70-100 = probably coeliac

100+ = definitely coeliac

[Researchfan]

🤗

Hi. The gluten challenge is typically at least 6 weeks duration. 3g to 10g gluten a day. One slice of bread typically 3grams of gluten. A 75g portion durum wheat pasta typically 7grams. One wheat digestive biscuit (UK) typically 0.7g gluten.

Your symptoms sound horrendous and maybe try and get tested sooner rather than prolonging the agony??

Even if you test negative you’re clearly sensitive to gluten? I read your profile, and noted Hashimoto thyroid which puts at high risk for coeliac, but itself is linked to different anti-gluten antibodies. Gluten can cross react with thyroid.

It’s well documented that Gluten intolerance manifests neurologically and is linked if not the cause in some cases of anxiety disorders.

It does seem to be the case in diagnosing coeliac that serious gut damage has to occur before positive antibodies show up.

I managed a gluten challenge last year for 12 weeks but I wasn’t eating enough gluten. I couldn’t eat much bread and mainly had biscuits which in comparison to bread and pasta are relatively lower in gluten. I tested negative but the ibs diarrhoea kicked in after a month. Went back to gluten free and then found out have wheat sensitivity (igE allergy sensitised).

You know your own body. Hope you get back on the path to health 🤗 .

[Regalbirdy]

Hi,

If you think that you aren’t being looked after correctly by the NHS, you might find the NICE guidelines for Coeliac Disease useful. Google ‘NICE NG20’ and it should bring them up.

[sobs1962 in reply to Regalbirdy]

Have read it now, but it's heavy reading, especially after you've had a stroke but it comes across as they will do everything in their power to avoid testing and diagnosis.

[Hidden]

You've had good information here already, so I have nothing to add other than that the blood test alone is not a great way to diagnose coeliac as false negatives are common. Many with negative blood test then go on to have a positive biopsy. There is also a genetic factor involved whereby you genetically may not produce the necessary antibodies for the blood test. I also consider anyone negating you on the basis of mental health to be a case of medical abuse, and if you can find an advocacy body that supports patients through NHS in such cases, that might be useful for you. If you are losing weight and having ongoing health issues, that is not in your head. The NHS does a good line in gaslighting anyone that they can not diagnose with the most basic of approaches. You know your body better than anyone.

[sobs1962 in reply to Hidden]

Agreed, but my GP practice, only ever do half a job at absolute best, so in the process of changing practices, so maybe someone will actually listen to me and not just dismiss me out of hand,however doctors are trained to believe that women are paranoid, neurotic, lying hypochondriacs, so it's going to be a huge battle and one that I don't know whether I have the energy to fight and even if I do get a positive test, the NHS practically leaves people to their own devices and offers very little in the way of help or support.

[Hidden in reply to sobs1962]

I fully agree with you. I am coming around to that way of thinking more and more. There are bits of the NHS that are great when it's common conditions with straight forward scanning and diagnosis, that may or may not lead to referral for surgery. But beyond that, it is a mess. Gut health, joint conditions/arthritis, autoimmune issues, anything related to food intolerance/allergies just is not on their radar. They will write no end of prescriptions for pain killers and meds to mask pain or suppress symptoms (if even), but a lot are left to rot and suffer. I hope you get sorted soon.

[Rocky]

Hi, my celiac blood test wasn't 10x the level and I also tested negative for the antibodies. My tissue transglutaminase iga level was 47. I was tested last August after my Endocrinologist asked for it. As I am over the age of 55 I had to have a gastroscopy with biopsies taken in November, and it confirmed that I had celiac disease. I also have very low iron as a result of my celiac disease and my Gastroenterologist has told me and also written to my Doctor to say that I will need to be on iron tablets for life, as I have iron deficiency anaemia. I hope your Doctor has done a full iron profile blood test for you. It has all been a shock for me and apparently I have had very low iron for about 9 years, but none of the GP's bothered to tell me, or find out why, and are quite happy to leave us scraping along the lower end. I have also just learnt that there are NICE guidelines for iron levels, and it quite clearly states what they should be. I have also just learnt that under NICE guidelines it says that anyone with Hashimoto's disease should be tested for celiac disease, and I was never tested when I was diagnosed with Hashimoto's in 2009. My Daughter has also got Hashimoto's and has just asked her Doctor for a celiac blood test. GP's are too quick to fob people off and they should be taking note of your celiac blood test result and your symptoms. I had to keep eating gluten right up until I got my results in December.

[sobs1962 in reply to Rocky]

They have stopped treating us like living, breathing ,feeling human beings and go about their jobs in almost robotic fashion.

[Rocky in reply to sobs1962]

I agree and it has got worse these past few years with lockdown and covid. My surgery even lost my gastroscopy referral and it was a very stressful time. I am so glad I have my diagnosis now and I am starting to feel much better. Everyone on here is very helpful and knowledgeable. I hope you get sorted out soon

[sobs1962 in reply to Rocky]

Me too, I have no energy as it is, so having constant diahorrea is only making me feel worse and I will continue to lose weight which will only make matters even worse.

[Rocky in reply to sobs1962]

Were your celiac test levels above the range? I am only asking as I have been told that your Doctor is meant to retest it after a certain time if it was over like mine. As I am over the age of 55 I had to have a gastroscopy to confirm my diagnosis. They shouldn't just be leaving you with those symptoms

[sobs1962]

I wish that was an option but I'm living on benefits, so just have to keep suffering, I suppose, no choice.

[Narwhal10]

Hi sob1962,

Apologies for the delay in replying. I went through some of your posts and got a bit more of a feel for your medical history. Oh my goodness, you have been through so much.

So, in my reply to previous post, a couple of us suggested writing to the practice manager with your concerns but if you also cc: to Coeliac U.K. (which have dieticians - there are several and can advise regarding your weight loss) plus

The Bardhan Research Education Trust Room, P39, GI and Liver Unit, Royal Hallamshire Hospital, Glossop Road, SHEFFIELD, S10 2JF (who’s mission statement is ‘medicine is best served when led by research, supported by science and sustained always by compassion’) who deal with gluten/wheat sensitivity as well as coeliac disease.

Best wishes

[sobs1962 in reply to Narwhal10]

Thanks for that, but it appears the diahorrea I've been experiencing, is a symptom of covid, it's nowhere near as bad as it was last week. Just need to keep going and see what happens.