Newly diagnosed

[jill55]

Hi I was diagnosed about 6 weeks ago. I stopped eating gluten right away. Although I have not had gut issues my general health has improved beyond measure. How ever I am experiencing very weird to me symptoms. When I was eating gluten I would get extremely hot after eating. In the last say 2 weeks in the evenings after I have eaten I become teeth chatteringly cold I have to wear a jacket and still freeze at 20 degrees. I also become overwhelmingly tired. All my bloods have come back fine apart from my blood platelets are high. I am to be retested in 10 days. Can anyone shed any light on this? Or do you think it may be part of the readjustment. I do feel cold after eating other meals but not to the extreme extent and I have a headache on waking but make sure I am hydrated at night.

[Katariina]

Very interesting, Jill 55. Before my coeliac diagnosis I had high platelets which were monitored every six months over several years. No explanation was ever given why they were high.

After coeliac diagnosis and embarking on a gluten free diet the platelets normalised within six months and have remained so ever since, some 15 years now.

Feeling cold and fatigued could be symptoms of thyroid problems, which can go hand in hand with coeliac. If you have not had blood tests to check this yet, might be worth checking.

Regards, Katariina

[jill55 in reply to Katariina]

Thank you Kartarlina I am thinking along those lines myself. My base temperature is below 36 which in itself is an indicator. I have printed off the information I need of all the blood work that indicate thyroid disease for my Dr. I have also indicated I will pay, if the NHS will no longer fund these tests. My daughter saw Dr Barry Durrant Peatfield many years ago a thyroid expert and I shall re read his work. He was very helpful to her at the time. Also interesting about your blood platelets mine were always normal before.

[penelope2]

Hi Jill, I know it's been many years since your post but I came across it and was very interested. Firstly I have gluten ataxia and see Professor Hadjivassiliou at Sheffield hospital. I have been gluten free for 3 years and dairy free for 2 and a half years.I too had those "chills" for many years before going gf. I would describe this as the opposite of "hot flushes".

How are you now?

The progression of ataxia has slowed right down for me but unfortunately I had been eating gluten for so many years that permanent damage has been done to my cerebellum resulting in the Ataxia.

It is a difficult condition to live with but I consider myself lucky as I am not as badly effected as many.

I understand that some people have thyroid problems from eating gluten.

Ataxia UK are starting a new autoimmune and gluten ataxia support group online in October which you might find interesting.

Take care.