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Uk Not Much About Brain Fog?


wiggle

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wiggle Newbie

Hello,

I am waiting for my final confirmation that I have coeliac although it seems pretty sure to myself and the doctors because of the blood test results.

My symptoms are tiredness, anxiety , depression, miscarriages and brain fog, which all seem to be discussed a lot on here, But practically nothing on any uk based sites. This seems a bit odd to me , cant really find a mention of brain fog at all and mentioning it to a doctor they just look at me slightly blankly. I feel a bit like i may be pinning my hopes in coeliac being the cause of my problems when it may turn out that it isn't. Anyone else found this ? Its like the Uk are just not recognising the links? Thanks!


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VeggieGal Contributor

Hi Wiggle, I've had most of your symptoms including brain fog. I know what you mean about your family gp not understanding about brain fog. Have you been referred to a specialist yet? because mine is brilliant and totally gets it!

I joined coeliac uk in January (expired now) and attended a local seminar run by Dr Stuart Currie a neuroradiologist working with Professor David Saunders, Dr Hoggard and Dr Hadjivassilou. Dr Currie is currently in research looking at brain aspects and imaging in patients with Coeliac disease/gluten ataxia and he also talked alot about brain fog.

If you google his name, you will find info on brain fog etc.

Good luck with the testing.

Celiac Mindwarp Community Regular

I am in the UK too, and have struggled to find up to date information here. This site has helped tremendously, especially about the mental side of things. VeggieGal's comments are really helpful.

It is great that good research is happening, my experience is that GPs are very mixed in their level of knowledge.

I am sorry to hear about what a difficult time you have had. I had many miscarriages before my 2 lovelies, sorry you have had to go through that.

I hope you get your diagnosis, but if not, consider whether it might be non celiac gluten intolerance. That is my diagnosis, and my life has transformed gluten-free.

Stick around and ask lots of questions

Welcome to the board :)

wiggle Newbie

Thank you both, so fantastic to get replies on here makes me not feel such an odd bod!

On to a bit more googling right now , thanks veggie gal.

So you guys found the gluten free did make a difference to the dreaded fog? anyone join a local group too?

:) x

Celiac Mindwarp Community Regular

Brain fog, depression, stress, anxiety all gone gluten-free :)

In fact, the first sign I get when I accidentally eat gluten is a feeling of hopelessness and dropping into depression. Even though I now now it will pass in a couple of days I feel I will never cope again.

It is very real, plenty of folks here will agree.

I found celiac UK a bit helpful, I used their helpline a few times. They can give you details of local groups. Their food directory is extensive, covering all the main supermarkets and catering suppliers. They are launching an app for members. They give different advice to here, and I tend to check things out here.

I found I had other intolerances, and don't eat any processed foods now. If you use gluten-free food replacements keep an eye on fat sugar and salt, as they can be higher.

I have used this as my support group, there is good chat on the what's for dinner thread and tickle me elbow as well as the health side of things.

Nice to meet you :)

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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