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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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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