Did your fatigue/brain fog improve and if so, when?

[Sleepydaisy]

Hi, newly diagnosed a few weeks ago - I was lucky in that I just went to the doctor and told them I was really tired and that my hair was still falling out nearly two years after having a baby (didn't even mention the mild IBS I thought I had and weird elbow and knee rash I had several months ago) and wondered if it was my thyroid. In hindsight I realise that I haven't been able to concentrate properly for more than five minutes for probably about ten years so was excited(?) to be unexpectedly diagnosed in the hope that maybe I wasn't just feeling the effects of getting older!

So I've only been on the gluten-free diet for two weeks but if anything I feel worse, headaches and very tired, so I know I need to be patient but I'm just interested in getting an idea of when/if other people's fatigue improved?

I think part of me is nervous as they've apparently just changed the guidelines in England so they've diagnosed me without a biopsy (new threshold for only blood test diagnosis is over 70 and my result was 128) so I'm just hoping that it really is the correct diagnosis!

Thanks and sorry for the essay!

[Wheatwacked]

Hi Sleepydaisy.

Gluten is addictive so there is a withdrawal period and severity varies with everyone.  Hang in there, it gets even better.   Gluten foods are fortified with essential vitamins and minerals that the government has determined that without fortification the American public does not get enough of.  When you start gluten free you need to either replace them with food sourced or supplement.  A good B complex vitamin will help.  

More focused on your symptoms:

Hair falling out, some of the brain fog, energy, hyper or hypo thyroid - low iodine

10 Signs and Symptoms of Iodine Deficiency   

Brain fog, energy, your IBS symptoms - Choline 

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

Mood Swings and General Immune system - large doses of vitamin D.  Get your vitamin D tested.  A lifeguard in summer measures about 80 ng/ml (or 200 nmol/L).  Ever seen a sad lifequard?  

Here's the list I take.  

• 10,000 IU vitamin D to control autoimmune.
• 500 mg Thiamine - neurologic symptoms
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

 

 

[Scott Adams]

Welcome to the forum! Can you give the full blood test results with the reference range? If it was a TtG-IgA test and you were 10x above the positive marker, it is my understanding that in the UK you would not need a biopsy to confirm the diagnosis. Assuming that this is the case, it would be very likely that you do indeed have celiac disease. 

How well informed are you about how to be 100% gluten-free? 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Sleepydaisy]

2 hours ago, Wheatwacked said:

Hi Sleepydaisy.

Gluten is addictive so there is a withdrawal period and severity varies with everyone.  Hang in there, it gets even better.   Gluten foods are fortified with essential vitamins and minerals that the government has determined that without fortification the American public does not get enough of.  When you start gluten free you need to either replace them with food sourced or supplement.  A good B complex vitamin will help.  

More focused on your symptoms:

Hair falling out, some of the brain fog, energy, hyper or hypo thyroid - low iodine

10 Signs and Symptoms of Iodine Deficiency   

Brain fog, energy, your IBS symptoms - Choline 

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

Mood Swings and General Immune system - large doses of vitamin D.  Get your vitamin D tested.  A lifeguard in summer measures about 80 ng/ml (or 200 nmol/L).  Ever seen a sad lifequard?  

Here's the list I take.  

• 10,000 IU vitamin D to control autoimmune.
• 500 mg Thiamine - neurologic symptoms
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

 

 

Thank you, I'll definitely take a look at my current vitamins and see what additional ones I need!

[Sleepydaisy]

4 hours ago, Scott Adams said:

Welcome to the forum! Can you give the full blood test results with the reference range? If it was a TtG-IgA test and you were 10x above the positive marker, it is my understanding that in the UK you would not need a biopsy to confirm the diagnosis. Assuming that this is the case, it would be very likely that you do indeed have celiac disease. 

How well informed are you about how to be 100% gluten-free? 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

Thank you! Yes I think it was the TtG-IgA for which the normal range was under 7, so having 70 as the threshold makes sense as the 10x limit. They didn't tell me the result of the other one but I've had a letter from the gastro consultant confirming my bloods were strongly positive enough for diagnosis. Think I just found it hard to believe at first as I thought 'but I live off bread, pasta and pizza!' But then realised maybe that was why I always felt not quite right!

I feel relatively confident with the diet and avoiding cross-contamination (I'm a biomedical scientist by background) although still waiting to see the dietician. Thank you for the link, will definitely take a look!