Celiac disease and haematology

[Meerkat1234]

My daughter has taken over my care with the doctor. He wants me to eat gluten after being off it since 2013 and have a celiac test. He has been onto haematology about my red blood cells. The normal range should be 100 and mine was a 110. They were not worried but he thinks it because I am not eating. I am not anemic he said. So what do you all think. I saw a dietitian and she said she thinks it is partly psychological and eating disorders are high in Autistic/ADHD sufferers. A psychaiactric nurse said in 2020 that I had developed a fear of food and I had 20 sessions of CBT for health anxiety and emetophobia which is a fear of vomiting. My husband has developed high blood pressure which is maybe the worry of my health and is having medication starting today. He has also got to have blood tests for everything a low thyroid vitamins and diabetes. We are in a bad way so my daughter is doing all of our care. I won’t be changing doctors now. My husband also has to have a ECG on Wednesday. I would appreciate any advice from you kind people. Just living with Autism and ADHD are a nightmare so I can’t cope.

[shaws Administrator]

I'm sorry you are having a very troublesome time at present due to your ill-health and also to your husband's.

It's good that you have a daughter who can investigate how best to restore both you and your husband's health - with the assistance of the professionals.

When we're not well nothing in our body seems to work as it should do so it is good that you have a daughter who can query anything with the professionals that could puzzle you.

I hope both you and your husband find a solution from a doctor who is capable of resolving both your unpleasant symptoms.

[Meerkat1234 in reply to shaws]

Morning shaws. Thank you so very much for your kind and caring reply. My husband and myself both have Autism which makes communication with everyone very difficult. We get intimidated by doctors. I also have ADHD which makes me impulsive usually resulting in a mess. My daughter is neurotypical so she has taken over our care. Thanks again. Take care .

[Jazzw]

I think it’s really good that you’re going to be looked after properly and that they’ll look at everything closely. Hopefully they’ll be able to get to the bottom of what’s going on and you’ll get some very much needed answers.

Wishing you all the very best x

[Meerkat1234 in reply to Jazzw]

Morning Jazzw. Thank you for taking the time to kindly replying to me. All the very best to you too. Take care.

[mothsballs in reply to Meerkat1234]

Hello Meercat, I am also autistic and possibly have ADHD, I am waiting for an official diagnosis for the latter. What was interesting is you have Emetophobia & health anxiety as do I. I get fearful of going to the Drs too & the communication problems. It does seem that food issues and eating disorders are very common with neurodiverse individuals. What doesn't help is we also seem to have gut issues probably due to the gut flora and not absorbing the nutrients, add an auto immune disease like thyroid and and it makes everyday things like eating very hard. I dont like eating and never eat away from home unless I have prepared it in advance. This is due to multiple food intolorances that make me ill, and feel sick, and food avoidance on risky foods that could be contaminated, by bad hygine handling, or more at risk of food poisoning like salads. I am also GF although not celiac I am intolorant and find I feel sick & bloated if I eat too much of it. Rye bread is lower in gluten. I am glad you have now the help and support of your daughter. Did CBT work for you btw? as it did not for me, and what was initaly emetiphobia I went for, I ended up after with health anxiety. I have since been told by Autism West Midlands that CBT, and hypnotherapy do not always work on autistic people and it can make things worse, as we over analize or take things too literally or to far etc. I find rescue remedy and homeopathic remedys help with both my anxietys and my nausea. forums like this one and the National Autistic Society I find very helpful. Do hope things will resolve and calmdown for both you and your husband.

[Meerkat1234 in reply to mothsballs]

I came on this forum with thyroid problems and that I couldn’t eat anything. I am now down to five foods none healthy. CBT made me worse as the Clinical psychologist knew nothing about Autism or ADHD. Good luck with your diagnosis for ADHD. I have never enjoyed eating as I have always had digestive problems and loads of food sensitivities. I am 65 and was only diagnosed ADHD in 2006 at the Maudsley hospital in London, then Autism in 2012 now this thyroid in March 2021. My husband is 71 and his blood pressure went really high and he had an ECG which the doctor wants to speak to him about. We are both Autistic so have communication problems and get intimidated by doctors. I am going out of my mind with worry about him as I am virtually bedridden at the moment. I am so weak with not eating and the vitamin supplements make me sick. I had hypnotherapy once for pain as I have fibromyalgia. I don’t know what to do. I feel absolutely lost. I haven’t tried homeopathy things before. Thank you for your kind reply. You are the only person who really understands. It is not easy to be neurodivergent in a neurotypical world and like you say this thyroid on top of all the struggles with Autism is so difficult. I also have problems in my blood and the haematology is ringing me now after my daughter complained. The doctor rang me and said it is because I am not eating. They are ringing in July. Thank you for your kind reply and take care of yourself. 😊