Unsure if coeliac

[Emzcat41]

Hello

I just wanted to ask your thoughts as on this forum there is so much wealth of knowledge and experience - so thank you in advance if you can offer any opinions.

In a nutshell I am 42 and have had issues with ‘IBS’ since childhood. I queried coeliac with Gp in my mid thirties but blood test was negative (was avoiding gluten by this point and felt some relief).

I ate gluten for almost 6 weeks (felt really rough) and had a biopsy. This is the part that confuses me - the results showed damage but consultant-said not enough for diagnosis. I have read you need 80% damage for diagnosis but at the time I didn’t ask what % mine was.

I’ve not been strictly gluten-free since and these are my symptoms- they don’t come on straight away (except the bloating)

Bloating, burning feeling in stomach/guts, lethargy, (been diagnosed as chronic fatigue and fibromyalgia- however I’m wondering if it’s because of coeliac) joint pain, cramps, aches, low mood, brain fog and memory issues and I had 4 subsequent miscarriages a few years back.

I view it as an intolerance which is why I am not really strict (drink beer and eat occasional bread).

I’m terrible at looking after myself and I feel if I had a clear diagnosis I would find it easier to follow strict g free.

I know I need to fully stop gluten and I’m making steps to do this - I deserve to feel well. I don’t think I can cope with eating gluten full on (it’s occasional now but still needs to stop) for 6 weeks again or 12 weeks as the new research I’ve seen suggests before another biopsy which consultant recommended.

I guess my question is - does anyone think it’s likely to be coeliac or just intolerance ?

I know what I need for diagnosis and no one can say , I guess I’m looking for other people’s experiences. I’m just fed up and finding it all so hard and draining atm. Especially with family who don’t understand because I don’t have diagnosis.

I’ve just done a gene test to see if I have coeliac gene/s - results not back yet and I understand this isn’t definitive either.

Thank you for reading my waffle .

[Hidden]

Hi, sorry to hear it's been a long and unpleasant journey. I have never had biopsy or positive blood test, but, in my books, damage is damage, regardless of how much % there is or how definitive the diagnosis. No one should have damage on their GI tract, regardless of how much, so I would get a second opinion on your endoscopy results, private if need be. Did you have the coeliac blood test prior to the biopsy? I'm not sure if straight gluten intolerance would cause damage to the gut, so you might want to check that one out with a gastro or coeliac expert.

I've also had years of issues, negative coeliac blood test, but better heath with ommission of gluten. I think you are - without being unkind- kidding yourself by keeping occasional gluten in your diet knowing that it causes you bad health. No one can help you with that matter other than yourself, so living in denial of the reality of your health issues in relation to your diet is only something you can take charge of. As long as your diet is not right, neither will your health, regardless of if it's coeliac or standard gluten intolerance.

With the wider issues, worth looking at histamine intolerance, h-pylori bacteria, SIBO, mast cell activitation syndrome, B-vitamin deficiency, thyroid, etc. If your gut is damaged the bacteria can become imbalanced, nutritionally deficiency set in, and other additional problems kick off. Also worth asking for a dexa scan for bone health, and look at your calcium/vitamin D intake.

You will find a number of people on here who are in the limbo of all the symptoms, but no clear diagnosis, and many are simply choosing to adopt coeliac diet/lifestyle. It's frustrating to not have the diagnosis and follow up care-pathway that a diagnosis allows, and constant negation by doctors. I've heard that a test is being developed that will provide a coeliac result without having to re-introduce gluten into the diet, but that may be a long way off.

[Emzcat41 in reply to Hidden]

Thank you so much for your reply Mise

You’ve absolutely hit the nail on the head about me being the only one who can change my diet - you are totally right (definitely not unkind) thank you.

I think maybe I’m run down with it all and feeling a fraud without that diagnosis. Posting on here and talking others who understand really helps and I’m changing it as of now.

I totally agree with you about the damage, surely that’s enough for diagnosis, it’s enough for me to stop now and start putting my health first.

I have fibromyalgia and I’m wondering how much of that will ease once I remove ALL gluten completely. I’m just about to get myself my own toaster and butter so that’s my commitment and start

Thank you for the advice on the other tests, I think I will look into those as well and ask my Gp if they can give me the report or results from the endoscopy x

[Hidden in reply to Emzcat41]

The biggest problem many/all of us have with coeliac/unknown coeliac is medical profession negation, and unfortunately, as a woman you will be prey to the misogyny of health professionals constantly negating women. You have to get firm with doctors who undermine your lived experience/health, and demand to not be gaslit. Best thing from medical point of view is get all you notes/results of endoscopy and get a second opinion. Good luck with this, and you've come to the right place for information and validation.

[Emzcat41 in reply to Hidden]

I’m also really sorry to hear you have this issue too. It’s bloody horrid and I wish you all the best x

[Hidden in reply to Emzcat41]

Thank you.

[CATRYNA49]

If you feel better eliminating any food from your diet, I would say that is your body recommending that you listen to it. Your inherent wisdom will never let you down.

[Narwhal10]

Hi Emzcat41,Sorry to hear your story. Yes, you do deserve to feel well and have a good life with less fatigue, joint pain and a better mood.

I too have a diagnosis of fibromyalgia but I query that now (maybe Sjorgens) I am definitely a coeliac but only via blood test (so, I am in that grey area too), I keep a food and symptoms diary. I had several nutritional deficiencies and was pretty ill. I’ve had GI issues for 20 plus years and I had to have the injection contraceptive pill as just having a period would mean a 3 day holiday in the bathroom.

Obviously, it’s your choice what you eat. I am aware that B12 and B1 deficiencies can be linked to fibro. Compared to 20 years ago going gluten free is so much easier.

As Mise said getting a copy of notes and scan.

All the best 😊