Coeliac or not?

I am a little concerned as my son's coeliac levels have been raised the last 2 times he had them tested. His gastro has said he saw no signs of damage from coeliac disease during his endoscopy and colonoscopy. He already has ibd and psc. He does also have keratosis pilaris which some people say is a symptom of coeliac disease.

Gluten sensitivity is in the family. My mum's diabetologist and dietitian think she is coeliac as since going gluten free she has come off morphine which she had been on for many years. The gp refuses to agree as she has many madcap problems but her dietitian said to assume she is and avoid gluten (she avoids wheat only). I have absorption problems so have gone gluten free and noticed my ME/CFS crashes are not as bad as they were. My eldest has a coeliac gf so is gluten free when with her but has a normal diet at home and ends up feeling ill. His gp feels he has probably got a gluten sensitivity.

With the family history and my youngest's blood results I am concerned he may be coeliac. His gastro is happy to keep checking his bloods (he is currently on 3 monthly appts). Should I be concerned nothing is being done now? Can bloods be raised but not be coeliac? Should we be waiting for signs of damage before diagnosis or are bloods sufficient?

The gastro is great and does listen to our concerns (though hubby takes him to gastro and will not advocate like I will). I an still cautious as my mum, myself and my eldest have had bad treatment by health professionals so I do not lay all my faith in them.

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  • yes keep pushing! It cant be a coincidence that 3 of you in the same family all have the same tendencies! I have the same comment from my Gastro but it makes sense, if you are no longer eating Gluten and the villi is healed then they won't see any sign will they...dur! Sometimes I wonder if they know what they are talking about.

    Have you asked to have any food allergy testing as sometimes you can have sensitivities to other things as well as gluten especially some derivatives hidden away. Im finding out that I cant eat Goats cheese but I can have some other cheese. I can have milk but not cream! Im also suspicious about soy.

    Id also try keeping a diary - pain that it is, of all the food that is eaten so you can spot quite quickly what is making symptoms flare.

  • I follow a GF diet to reduce my thyroid antibodies (and it's working really well)

    I have also been doing LCHF to reverse my T2 diabetes and since September last year I have been testing my blood before and two hours after every meal. I find that it's easier to record food if you have a chart made out in advance so I made a spreadsheet that I printed off - I'm on sheet 20 now and can see every single meal I have eaten since I started - obsessive or what!

    I have spaces for the date and my 'before and after' blood readings but you wouldn't need that, then I just quickly jot down everything as soon I've eaten. I never snack but you could add spaces for snacks.

    It's amazing how regularly recording what you are eating can give you the information you need to make changes.

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