Miserable

I've suspected I have CD for years, like many others I have avoided getting tested for years I cannot face the fact I have to eat gluten for the test to detect gluten antibodies. I am overweight and hate that everything I consult my GP for always comes back to my weight ☹️

I have recently made an appointment with my GP for the blood test but feel miserable already

I have horrendous heartburn I feel like my entire GI tract is on fire I have zero appetite at the moment as eating makes me feel horrid.

I'm compiling a list of symptoms and remembered that after I had my son 2.5 years ago I felt at my lowest and even had DH flare up - it was awful laying there ripping my skin of my knees and elbows. It dissappeared though, and has come back mildly once - has any one else had Intermittant DH?

I realise this post is just a giant whinge and I apologise I'm very miserable eating gluten 😭

12 Replies

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  • Hi Refuser, apart from everything else it sounds to me as if you may have Oesophagitis, so here's a link about it:

    patient.info/health/acid-re...

    Really going through a gluten challenge is up to you and speaking as someone who is a diagnosed Coeliac I'm glad that I have been officially diagnosed as there is follow up treatment like a dexa scan and your GP's practice gets extra funding for a diagnosed coeliac which puts 'us' in the system.

    There are many posts on this on here and to check them out just use the search box at the top right hand side of the GFG home page. In my honest opinion it is worth it so that you know for sure with no ifs buts or maybe. So the end result is worth the effort as is losing weight, in my opinion.

    As for having a whinge, well hey we're a support forum so its somewhere for members to let off steam.

    And I'm sorry that I can't answer your question on DH but I believe it does flare up and imagine that stress does not help so good luck and here's a link to other HU sites that might interest you:

    healthunlocked.com/nhsweigh...

    healthunlocked.com/healthye...

    healthunlocked.com/walkingf...

  • Jerry thank you - yes you are right it definitely sounds like this to me I have Ehlers Danlos as well so I am used to pain and accept my broken body lol I was feeling super sorry for myself this morning so thank you for reaching out

    I will read up on the previous DH threads I do know that stress is massive on the body I was suffering heavily with that last year - postnatal depression and anxiety

    I am not a "sicknote" I promise 😝

    I think because I have worked on so many issues and have really turned life around for myself this is troubling me a little but thank you

  • I can't tell from reading but are you following a proper gf diet now? Are the symptoms you mention due to eating gluten?

    If I'd been gf for 3 years I wouldn't do a gluten challenge. I don't get an annual check-up, I only had a DEXA scan the year of diagnosis. I've had two endoscopies - two years apart and the latter only because I was a volunteer. My CCG has stopped prescription foods so actually I'm not sure it there would be any benefit.

    I was very underweight before diagnosis and have managed to gain weight by being gluten free.

    My partner has GERD (reflux disease) but is not coeliac. It seems to be set off by a range of different foods - a lot of which you'd consider healthy.

    Don't forget the blood test won't be accurate if you are gluten free.

  • Hi Jackson so no I'm not GF currently, I am eating gluten while waiting for a blood test from the GP hence eating gluten at the moment

    I have been symptomatic for a long time but I've never been to the GP to get officially diagnosed - hence the misery >< I have avoided tests for various reasons but

    I have always known gluten causes my symptoms i have decided to get officially tested I think just so I know one way or another plus I think it helps others understand

    Pre challenge I would avoid gluten but not strictly and I would get flare ups of varying degree so it would be a cycle of avoidance etc

    I have decided to be GF irrespective of the result

    That's interesting about the GORD/GERD (I never know which is right) I think my particular misery was caused by seeded bread last week I don't know why but it caused all sorts of issues I've not eaten it since

  • Have you had the stool test for h pylori?

  • I have not

  • Ah ok. I was taking omeprazole etc but couldn't get rid of burning acid problems. Had the stool test which was positive. Tried using antibiotics but had a penicillin reaction. I stopped eating gluten and using supplements to get rid of h pylori. It worked. Stomach is much better, no more acid.

  • Im confused, since 1967 there has been a recognised link between DH and Coeliac disease and people with DH told to be gluten free, or are you on Dapsone for the DH, .....

  • I haven't been diagnosed with DH as yet sorry for the confusion

  • Speaking with my Thyroid UK hat on - I am wondering if you have had your thyroid CORRECTLY tested 😊 In particular I am thinking Hashimotos - auto-immune thyroiditis.

    The thyroid can go off kilter after childbirth. Digestive issues are very common as Hypos suffer with low stomach acid which affects the breaking down of proteins. With over 300 symptoms linked to thyroid it is always good to rule things out.

    Other important health markers are tests for B12 - Folate - Ferritin - VitD which all need to be optimal and not bumping along the bottom of the range.

    I'm not a medic - just a Hashimotos gal with Crohns and a B12 issue ... 😴

    Happy to help .....

  • Maz thank you for this perspective, so last year I had a Thyroid screen but I'm not sure it would be as concise as you say - I think if was TFT and T3 if I recall

    I saw the GP on weds he listened and didn't mention my weight (hooray) he ordered a coeliac screen, FBC, U&E's and LFT he also requested a stool sample to check for any markers of inflammatory bowel.. he mentioned IBS tho of course

  • From my reading on the Thyroid UK forum for almost 6 years - it seems GP's think it is adequate to test the TSH and sometimes the T4. Sadly the most important tests are rarely done.

    These are the tests I would suggest : - TSH - FT4 - FT3 and the Thyroid Anti-bodies TPO & Tg.

    thyroiduk.org

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

    The first link describes all things Thyroid and the second one is about Home Testing Kits that can be sent to your home - either finger prick ones or otherwise. At least you get all the Thyroid Function Tests and also includes Vitamins and Minerals - Blue Horizon Thyroid 11 - I believe is the one. Many people on the Forum use this facility and have reached a diagnosis denied by their GP's.

    I am sure you are aware that you are legally entitled to have copies of all blood tests with ranges under the Data Protection Act. A good way to check what the GP may have missed/overlooked - it happens :-)

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