Undiagnosed NCGS - Advice and opinions on symptoms appreciated

[MrsTurner]

Hello, newbie here!

Apologies in advance for the longest post ever but I'm at my wits end and wanted to get some opinions - if anyone has the time to read and respond, I'd be so grateful!

I've been feeling not quite myself for about 2 years, but in particular I've felt increasingly unwell in the last 4-5 months or so. GPs must be sick of me but they've suggested a number of things which haven't worked and they are just scratching their heads now, so I'm hoping some advice on here may be more helpful.

I've researched lots and came to the conclusion that I may have an issue with gluten. I've tested negative for Coeliac , but I feel there is still something going on, and so I'm now on day 5 of a cold turkey gluten-free diet.  I appreciate it is early days to be making solid conclusions.

Symptoms I've had for a while in no particular order:

• Nausea
• Dizziness
• Light-headedness
• Jittery/shaky/ caffeinated feeling (only on the inside - no visible shakes)
• Brain fog
• Joint pain particularly in elbows, knees, fingers, top of spine, neck when turning head to right - no recollection of injury, just seems to come on.
• Poor concentration/hard time understanding and focusing
• Vague abdominal pains/aches/discomforts/ tenderness which don't seem to be constant or stay in the same place - they feel muscular/ skin level rather than deeper inside
• Rib pain when in certain positions/ribs tender to touch (the lower down ribs under breasts)
• Feeling the need to wee more often and don't always feel like I'm really finished when I go (No pain - doesn't feel like cystitis)
• Fatigue
• Lower resting heart rate (Gone from mid/high 70s to high 50s/ low 60s in a number of months)
• Pins and needs in hands and sometimes feet - was diagnosed with Carpal Tunnel and De Quervains in 2021 after Nerve Conduction study
• Heavy menstrual periods - Have had Transvaginal US, Pelvic Xray & Pelvic MRI and there was nothing of note - no visible endometriosis or cysts.
• Recently periods have become more irregular - weeks late or early, no variation in length
• Chest pain/discomfort
• Shortness of breath (This is hard to explain. I am breathing fine, but I feel like I can't catch a full breath. I try yawning regularly to get enough air to satisfy and then the feeling comes back)
• Chest and throat fluttering but heart rate stays the same
• Earache/ pounding in left ear
• Ear pressure/crackling/popping in both ears - need to use Valsalva manoeuvre and Otovent balloon to pop and relieve pressure, which builds up again.  This is usually after eating but can also happen randomly.
• Tinnitus and pulsatile tinnitus - hearing buzzing, ringing heart beating and whooshing in head.
• Migraine with visual aura - both with and without headache
• Occasional vertigo when moving head - have tried Epley manoeuvre for BPPV which didn't change anything
• Loss of balance and coordination
• Clumsiness - walking into things/dropping things
• Occasional tight throat/feeling something is stuck in throat/trouble swallowing
• Felt at one point like I was struggling for words and slurring speech (terrified this was a stroke but GP checked out ok on that front)
• Loss of appetite
• Belching
• Bloating
• Lots of very smelly wind
• Occasional twitches in abdomen
• Constipation with mucous. Deep pain in rectum and lower abdomen just before relieving myself of particularly bad constipation. This pain disappears immediately after BM.
• Night sweats and vivid dreams - rare occurrences
• Sore throat regularly
• Always sniffly/runny nose

Many of these are still present.  Some seem to be improving slightly since going gluten-free, although in the past I seem to have had good days without many symptoms, and then things get worse again, so it feels too early to tell.

 

New symptoms in the last 5 days since going gluten free:

• Extreme hunger, especially for carbs - sometimes makes me feel sick I'm that hungry, but might have eaten only 2/3 hours ago
• Headache
• Feeling a bit weird and lightheaded within 30 minutes after eating - no patterns, even just eating potato or vegetables can bring this on.
• Dizziness and light-headedness when standing - been regularly checking blood pressure at home and its always normal
• Periods of extreme fatigue/nodding off

 

Other things that may be of note:

• 33 Y/O female
• Had a baby in 2020 and feel my health has gotten worse since then.
• Had Covid in January 2022. Still suffered from POTS for a month after testing negative
• Don't drink alcohol
• Don't smoke
• Don't have any caffeine
• Not pregnant
• Try to eat a varied and healthy diet and move as much as my body allows
• Could do with losing around a stone to be optimal healthy weight - can't seem to lose it, despite being in a calorie deficit. 

 

Recently had blood tests for:

• Urea & electrolytes - NA, K, urea, creatinine, GFR - all within normal ranges
• Coeliac - negative
• Thyroid serum TSH  - within normal range
• Diabetes  HbA1c  - within normal range
• B12  - within normal range
• Folate - within normal range
• Full blood count - all within normal ranges
• Serum ferritin (iron) : borderline low at 10ug/l (GP wasn't concerned about this. However I have started taking OTC iron supplements anyway)
• Have had a number of A&E visits which led to bloods and ECGs  for heart - all came back clean. They put chest pains and shortness of breath down to anxiety (sigh), which I don't really agree with.

 

So given all this I'm wondering whether others agree my symptoms could be related to Gluten? Has anyone experienced the same or similar? Does it sound like something else? Could my current worsening of some symptoms be due to gluten withdrawal? I feel that some of my current symptoms look to be related to blood sugar and hypoglycaemia, but since I haven't suffered from those before and my diabetes blood test came back normal, I didn't know whether this could just be common during gluten withdrawal. Or maybe related to the borderline low Iron?

 Any feedback or advice would be amazing.  GP is aware of all these symptoms BTW but can't come to any conclusions and not sending me for any urgent tests. They won't even put me in for my next appointment until the middle of next month as they don't think it's serious. 

[Russ H]

Hello, and welcome to the forum. Many of your symptoms are common with coeliac disease. Do you know what tests you had for coeliac disease and what the figures were?

[MrsTurner]

11 minutes ago, Russ314 said:

Hello, and welcome to the forum. Many of your symptoms are common with coeliac disease. Do you know what tests you had for coeliac disease and what the figures were?

Hi Russ, Thank you.  I had Tissue transglutaminase IgA level which came back as <0.5 U/mL. GP said it would have to be over 15.0 to be positive for Coeliac.  I did read that there were other tests that can be done but he said we don't do those tests routinely in the UK and the investigation would end there.

[Russ H]

2 minutes ago, MrsTurner said:

Hi Russ, Thank you.  I had Tissue transglutaminase IgA level which came back as <0.5 U/mL. GP said it would have to be over 15.0 to be positive for Coeliac.  I did read that there were other tests that can be done but he said we don't do those tests routinely in the UK and the investigation would end there.

Did they also measure total IgA? A minority of people are deficient in IgA and so don't show up on the standard test. More tests are becoming available in the UK but unfortunately the NICE guidelines are very conservative regarding testing.

There a few very knowledgeable people on the forum regarding NCGS who will be of help but most of them are on US time.

It does take time for recovery to occur on a strict gluten free diet. I noticed gradual improvement after about a week.

[MrsTurner]

1 minute ago, Russ314 said:

Did they also measure total IgA? A minority of people are deficient in IgA and so don't show up on the standard test. More tests are becoming available in the UK but unfortunately the NICE guidelines are very conservative regarding testing.

There a few very knowledgeable people on the forum regarding NCGS who will be of help but most of them are on US time.

It does take time for recovery to occur on a strict gluten free diet. I noticed gradual improvement after about a week.

There's no mention on my record of a Total IgA measurement so I'm not sure.

Thank you so much for your replies.  Did you suffer from any withdrawal symptoms during the first week?

[trents]

Yes, it is unfortunate that more blood tests weren't ordered for celiac disease. Not everyone who has celiac disease will show elevated tTG-IGA. Some immune systems respond atypically and as Russ314 said, low total IGA can skew the tTG-IGA downward. There is also the option of purchasing a home celiac test kit from a companies like imaware. But please understand that you would need to go off your gluten-free diet for a couple of months for the blood tests to be valid.

It does sound like you might be having gluten withdrawal. If you don't have celiac disease you could have NCGS (Non Celiac Gluten Sensitivity) for which there is no test.

[MrsTurner]

2 hours ago, trents said:

Yes, it is unfortunate that more blood tests weren't ordered for celiac disease. Not everyone who has celiac disease will show elevated tTG-IGA. Some immune systems respond atypically and as Russ314 said, low total IGA can skew the tTG-IGA downward. There is also the option of purchasing a home celiac test kit from a companies like imaware. But please understand that you would need to go off your gluten-free diet for a couple of months for the blood tests to be valid.

It does sound like you might be having gluten withdrawal. If you don't have celiac disease you could have NCGS (Non Celiac Gluten Sensitivity) for which there is no test.

Thank you so much for your reply. I wasn't aware of the low total IgA- you would think they would test that as standard wouldn't you if it made a difference. I will have a look at the home test kits in the meantime.

[Russ H]

1 hour ago, MrsTurner said:

Thank you so much for your reply. I wasn't aware of the low total IgA- you would think they would test that as standard wouldn't you if it made a difference. I will have a look at the home test kits in the meantime.

The NICE guidelines suggest testing for total IgA as well as IgA tTG. Might be worth referring this your GP to this if it hasn't been done.

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#serological-testing-for-coeliac-disease

Other tests that might be worth considering for home testing include IgA anti-DGP, IgG anti-DGP, and IgG tTG. It is also possible to have a genetic test to see whether you are susceptible to coeliac disease by seeing what type of HLA gene you have. Almost everybody with coeliac disease has either HLA-DQ2, HLA-DQ8, or HLA-DQ2.2, and anyone not having one of those halotypes is unlikely to have coeliac disease.

Home tests are fairly accurate although not as accurate as an accredited laboratory. I found several UK suppliers - I have not used them, have no connection and am not recommending them, I am just giving this as an example of what is available.

 

Combined IgA and IgG anti-tTG:

https://www.personaldiagnostics.co.uk/coeliacscreen.html

Combined IgA and IgG anti-DGP:

https://homehealth-uk.com/all-products/prima-home-coeliac-celiac-disease-wheat-gluten-intolerance-test/

IgG anti-tTG laboratory test:

https://www.cerascreen.co.uk/products/gluten-intolerance-test?variant=38260235591

 

5 hours ago, MrsTurner said:

Did you suffer from any withdrawal symptoms during the first week?

Not that I recall. I felt lousy prior to a gluten free diet and then gradually improved over 9 months. Going back on gluten for testing was very unpleasant indeed.

[trents]

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[knitty kitty]

This article may be helpful...

Hiding in Plain Sight

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

[Wheatwacked]

My first two nights I had VIVID dreams of donuts. Until this phase passes eat whatever helps, No wheat, barley or rye, though. It is temporary and once you've kicked that little gluten devil off your shoulder your taste buds will find wondrous new things. 

Here are my hints; take large doses of vitamin D and Thiamine . Raising your vitamin D plasma level to 80 ng/ml may regulate your out of control autoimmune system. 

Make sure you are eating enough potassium and choline. There is worldwide concern about these two, There are no reliable tests.

"A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;"   https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s

Check out this list and compare, You are normal It is not nerves or hypochondria. Both Celiac Disease and NCGS respond to gluten free diet and increasing vitamin and minerals. Assume the worst, that it is still undiagnosed celiac disease.  Some people take 20 years before testing positive. 1% are diagnosed celiac disease, 10% are diagnosed NCGS. Welcome to the Twilight Zone.

What Are the Symptoms of Celiac Disease?

Common Nutrient Deficiencies in People with Newly Diagnosed/Untreated Celiac Disease

My diet: lean meat, cottage cheese, eggs, ripe bananas, vegatables, oranges, leafy greens. Avoid reduced fat products. Fill up.

[MrsTurner]

51 minutes ago, knitty kitty said:

This article may be helpful...

Hiding in Plain Sight

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

Thank you so much for this!

[MrsTurner]

6 minutes ago, Wheatwacked said:

My first two nights I had VIVID dreams of donuts. Until this phase passes eat whatever helps, No wheat, barley or rye, though. It is temporary and once you've kicked that little gluten devil off your shoulder your taste buds will find wondrous new things. 

Here are my hints; take large doses of vitamin D and Thiamine . Raising your vitamin D plasma level to 80 ng/ml may regulate your out of control autoimmune system. 

Make sure you are eating enough potassium and choline. There is worldwide concern about these two, There are no reliable tests.

"A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;"   https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s

Check out this list and compare, You are normal It is not nerves or hypochondria. Both Celiac Disease and NCGS respond to gluten free diet and increasing vitamin and minerals. Assume the worst, that it is still undiagnosed celiac disease.  Some people take 20 years before testing positive. 1% are diagnosed celiac disease, 10% are diagnosed NCGS. Welcome to the Twilight Zone.

What Are the Symptoms of Celiac Disease?

Common Nutrient Deficiencies in People with Newly Diagnosed/Untreated Celiac Disease

My diet: lean meat, cottage cheese, eggs, ripe bananas, vegatables, oranges, leafy greens. Avoid reduced fat products. Fill up.

Wow, thank you so much for the great response. I'll be sure to read up some more on this and take all the tips on board!

Glad I'm not the only one dreaming about donuts 😂

[knitty kitty]

On 6/26/2022 at 7:20 AM, MrsTurner said:

 

Symptoms I've had for a while in no particular order:

• Nausea
• Dizziness
• Light-headedness
• Jittery/shaky/ caffeinated feeling (only on the inside - no visible shakes)
• Brain fog

These are all symptoms of Thiamine deficiency.  Thiamine can only be stored for three weeks.  We can experience thiamine deficiency in as little as nine days.  Our bodies need more thiamine when we are ill (like with Covid) or pregnant, are under emotional stress, or are outdoors in hot weather.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Joint pain particularly in elbows, knees, fingers, top of spine, neck when turning head to right - no recollection of injury, just seems to come on.

Vitamin D deficiency and deficiency in Omega Threes can cause achy joints.

Thiamine deficiency can cause neuropathy.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Poor concentration/hard time understanding and focusing

Thiamine deficiency symptom.  Our brains use as much Thiamine just thinking as a marathon runner's muscles do during a race.

 

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Vague abdominal pains/aches/discomforts/ tenderness which don't seem to be constant or stay in the same place - they feel muscular/ skin level rather than deeper inside

Thiamine is needed for peristalsis, those automatic contractions of the digestive system that moves food along.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Rib pain when in certain positions/ribs tender to touch (the lower down ribs under breasts)

The ribs are connected by flexible cartilage to allow for expansion as during pregnancy.  Healthy Omega Threes, Vitamin D, and Thiamine are essential for this.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Feeling the need to wee more often and don't always feel like I'm really finished when I go (No pain - doesn't feel like cystitis)

Frequent urination with retention is a symptom of B12, B6 Pyridoxine, and Thiamine insufficiencies.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Fatigue
• Lower resting heart rate (Gone from mid/high 70s to high 50s/ low 60s in a number of months)

These are symptoms of Thiamine deficiency.  Every single cell in our bodies need thiamine.  As the body gets more deficient, it tries to use less thiamine, so heart rates can drop, or conversely, tachycardia can occur.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Pins and needs in hands and sometimes feet - was diagnosed with Carpal Tunnel and De Quervains in 2021 after Nerve Conduction study

Deficiencies in several of the B vitamins can produce neuropathy (pins and needles) including B12, B6 Pyridoxine, Niacin B3.  

Thiamine deficiency can affect the tendons causing Plantar fasciitis, Carpal tunnel, and De Quervains.  

With De Quervains, keep your thumb parallel to your fingers when lifting children or other heavy objects.  Scoop things up with your thumb parallel to your fingers.  I had this myself because I lifted my son with my thumbs out like you would put your hands if holding a bowl of soup.  Don't!  Cup your hands with your thumb in line with your fingers.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Heavy menstrual periods - Have had Transvaginal US, Pelvic Xray & Pelvic MRI and there was nothing of note - no visible endometriosis or cysts.
• Recently periods have become more irregular - weeks late or early, no variation in length

Vitamin D deficiency can cause hormone irregularities.  Vitamin D itself acts as a hormone if proper levels are maintained which is above 80ng/mol.

Thiamine deficiency can contribute to pelvic pain and cramping.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Chest pain/discomfort
• Shortness of breath (This is hard to explain. I am breathing fine, but I feel like I can't catch a full breath. I try yawning regularly to get enough air to satisfy and then the feeling comes back)
• Chest and throat fluttering but heart rate stays the same

Thiamine deficiency causes "sailor's asthma".  This air hunger occurs because Thiamine is needed for the proper oxidation of the blood.  B12 deficiency can also cause breathlessness.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Earache/ pounding in left ear
• Ear pressure/crackling/popping in both ears - need to use Valsalva manoeuvre and Otovent balloon to pop and relieve pressure, which builds up again.  This is usually after eating but can also happen randomly.
• Tinnitus and pulsatile tinnitus - hearing buzzing, ringing heart beating and whooshing in head.
• Migraine with visual aura - both with and without headache
• Occasional vertigo when moving head - have tried Epley manoeuvre for BPPV which didn't change anything
• Loss of balance and coordination
• Clumsiness - walking into things/dropping things

Thiamine deficiency manifests in ataxia because the cerebellum which controls our balance and automatic nervous system, and the vestibular system in our ears for balance are highly sensitive to Thiamine deficiency.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Occasional tight throat/feeling something is stuck in throat/trouble swallowing

Dysphagia, difficulty swallowing, is another symptom of Thiamine deficiency.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Felt at one point like I was struggling for words and slurring speech (terrified this was a stroke but GP checked out ok on that front)

Thiamine deficiency can cause slurring of speech.  It can go along with dysphagia.  Thiamine deficiency can get so severe as to lead to Wernicke's Encephalopathy which involves ataxia...

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Loss of appetite

Thiamine deficiency can cause anorexia, loss of appetite, and also conversely, a ravenous appetite.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Belching
• Bloating
• Lots of very smelly wind
• Occasional twitches in abdomen
• Constipation with mucous. Deep pain in rectum and lower abdomen just before relieving myself of particularly bad constipation. This pain disappears immediately after BM.

Constipation or conversely diarrhea can be symptoms of thiamine deficiency.  

Belching, burping, wind can be the result of Small Intestinal Bacterial Overgrowth.  The bad bacteria feeding on undigested starches produce this gas.  

SIBO is seen in Thiamine deficiency.  Thiamine is needed to keep the bacteria from overgrowing into the small intestine.  Without enough thiamine to keep them in check, the bad bacteria party like there's no parental supervision.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Night sweats and vivid dreams - rare occurrences

Night sweats can be caused by low Vitamin D and B12 deficiency.

Nightmares can be caused by low magnesium.  Magnesium is necessary for Thiamine to function properly.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Sore throat regularly
• Always sniffly/runny nose

Thiamine deficiency is needed to regulate Mast Cell degranulation and histamine release.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

 

New symptoms in the last 5 days since going gluten free:

• Extreme hunger, especially for carbs - sometimes makes me feel sick I'm that hungry, but might have eaten only 2/3 hours ago

Thiamine deficiency can affect the appetite causing anorexia (no appetite) or causing a ravenous hunger.  

Remember after cutting out gluten products, you are no longer consuming the vitamins and minerals that are added for enrichment to replace the nutrients lost in processing. Your body is signaling your brain it needs more vitamins so the brain signals you to keep eating.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Headache
• Feeling a bit weird and lightheaded within 30 minutes after eating - no patterns, even just eating potato or vegetables can bring this on.

High carbohydrate loads can cause an increase in blood glucose levels which can make us feel foggy or light headed after eating.  

Thiamine is needed for digestive enzymes and insulin made in the pancreas.  Without sufficient Thiamine, our blood glucose levels may take longer to return to a lower fasting level after eating high carbohydrate meals.  Postprandeal blood glucose levels should return to fasting levels within two hours after eating.

Periods of hypoglycemia can cause similar symptoms.  

HbA1C is an average.  So if you have extreme highs and then extreme lows, the average will reflect something in between, aka "normal".  

Get a cheapo glucose meter and check your level before eating (fasting level) and 2 hours after eating.  You should be back at your fasting level two hours after eating.  Check during hypoglycemic periods to see how low it is.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Dizziness and light-headedness when standing - been regularly checking blood pressure at home and its always normal
• Periods of extreme fatigue/nodding off

Postural Orthostatic Tachycardia Syndrome (POTS) is associated with Thiamine deficiency.

On 6/26/2022 at 7:20 AM, MrsTurner said:

Other things that may be of note:

• 33 Y/O female
• Had a baby in 2020 and feel my health has gotten worse since then.

Pregnancy can drain thiamine.  Children can become deficient if their mothers were deficient during pregnancy.  Celiac Disease is hereditary, so children should be checked for Celiac genes and symptoms.

 

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Had Covid in January 2022. Still suffered from POTS for a month after testing negative.

More Thiamine is required to fight infections like Covid.  Doctors have found that treatment patients with Thiamine, Vitamin D, and Vitamin C have led to better outcomes and increased survival rates and is necessary for recuperation for "long haulers" still dealing with after Covid symptoms.

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Try to eat a varied and healthy diet and move as much as my body allows
• Could do with losing around a stone to be optimal healthy weight - can't seem to lose it, despite being in a calorie deficit. 

In Thiamine deficiency, the body stores carbohydrates as fat as a means to save thiamine.  Inability to lose or shift weight is a symptom of Thiamine deficiency.

On 6/26/2022 at 7:20 AM, MrsTurner said:

Recently had blood tests for

• B12  - within normal range
• Serum ferritin (iron) : borderline low at 10ug/l (GP wasn't concerned about this. However I have started taking OTC iron supplements anyway)

Iron and B12 can be stored in the liver for several years.  Deficiency symptoms of B12 can occur before blood levels show there is an outright deficiency.  

B12 deficiency symptoms can overlap with Thiamine deficiency symptoms and deficiency symptoms of other B vitamins because the eight B vitamins work all together.  Our bodies cannot make these vitamins, so we must get them from our diet every day.  Except for B12, most B vitamins cannot be stored for longer than a month.  If we have malabsorption  problems as in Celiac Disease, we can suffer deficiency symptoms in as little as nine days.

Riboflavin deficiency can contribute to migraines.  Riboflavin B2 and B6 Pyridoxine, Folate B9 are necessary for correcting anemia.  Not just iron supplements.  

On 6/26/2022 at 7:20 AM, MrsTurner said:

• Have had a number of A&E visits which led to bloods and ECGs  for heart - all came back clean. They put chest pains and shortness of breath down to anxiety (sigh), which I don't really agree with.

Again, Sailors' asthma, tachycardia, increased anxiety are all symptoms of Thiamine deficiency.

Doctors don't recognize thiamine deficiency outside of alcoholism.  Doctors think nutritional deficiencies don't occur outside of starving third world countries.  They are wrong.

Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies.  Checking for nutritional deficiencies is part of proper follow up care for Celiac Disease.  Unfortunately, blood tests for vitamin deficiencies don't accurately reflect the level of vitamins in the tissues.  The body will starve its tissues to keep levels in the blood stabilized in order to supply important organs like the heart and brain in order to keep them functioning.  By the time a deficiency shows up in the blood, it's very seriously depleted.

On 6/26/2022 at 7:20 AM, MrsTurner said:

 

Discuss with your doctor and nutritionist about the benefits of supplementing with B Complex vitamins, Vitamin C, Vitamin D, Vitamin A, magnesium and other minerals while you are healing.  

Keep in mind doctors are not trained to recognize vitamin deficiencies.  Doctors are trained to prescribe pharmaceuticals in their pharmaceutical company funded medical learning institutions. 

Thiamine deficiency symptoms can wax and wane according to how much you consume from your diet so symptoms can fluctuate or progressively get worse with time.  Because Thiamine deficiency symptoms can vary in presentation in each individual, doctors tend to chalk it up to "anxiety" (especially with female patients), and prescribe pharmaceuticals.  This will not help. Correcting vitamin deficiencies will help.  

I've lived through severe vitamin deficiencies because my doctors did not recognize deficiency symptoms outside of alcoholism.  When I swore I wasn't drinking, they wrote me off as a hypochondriac.  I suffered for years unnecessarily.  

Edited July 1, 2022 by knitty kitty
Typo correction

[MrsTurner]

10 hours ago, knitty kitty said:

 

Wow, Thank you so much for taking the time to write such a detailed response!!!

I get written off as a hypochondriac with anxiety at every appointment, so it's comforting to hear I'm not alone, although I do hope you are feeling well again now!  My GP can't even speak to me until the 19th July for a phone appointment, even with all the symptoms and concerns I've mentioned above- it's not that important (If they had to live with it I'm sure they'd see the other side).  I've bought some OTC B Vitamins and Vit D, and I'm already taking iron and Vitamin C so if it is based on deficiencies I'm hoping they are strong enough to start doing something until I can get some sort of response from the GP about it. 

I've lost all faith in medical professionals though now. None of my Drs suspected anything to do with Gluten either - it was me who researched for weeks and weeks non stop and asked for the test and now the diet seems to be working, to a degree, but obviously there are still things happening, and deficiencies might just make sense.

Thank you! 

[Wheatwacked]

This chart may help give you an idea of what vitamins you are dealing with. The RDA is the minimum determined to keep 95% of the healthy population from having symptoms of deficiency. Us sick people need more.  The Fact Sheet for Health Professional from NIH are a good start to dive deeper.  For example: Thiamin Fact Sheet for Health Professionals

[trents]

5 hours ago, MrsTurner said:

Wow, Thank you so much for taking the time to write such a detailed response!!!

I get written off as a hypochondriac with anxiety at every appointment, so it's comforting to hear I'm not alone, although I do hope you are feeling well again now!  My GP can't even speak to me until the 19th July for a phone appointment, even with all the symptoms and concerns I've mentioned above- it's not that important (If they had to live with it I'm sure they'd see the other side).  I've bought some OTC B Vitamins and Vit D, and I'm already taking iron and Vitamin C so if it is based on deficiencies I'm hoping they are strong enough to start doing something until I can get some sort of response from the GP about it. 

I've lost all faith in medical professionals though now. None of my Drs suspected anything to do with Gluten either - it was me who researched for weeks and weeks non stop and asked for the test and now the diet seems to be working, to a degree, but obviously there are still things happening, and deficiencies might just make sense.

Thank you! 

Make sure your vitamins and supplements are gluten free. Wheat starch is sometimes used as a filler in pills.

[MrsTurner]

2 hours ago, trents said:

Make sure your vitamins and supplements are gluten free. Wheat starch is sometimes used as a filler in pills.

Great point, thank you!

6 hours ago, Wheatwacked said:

This chart may help give you an idea of what vitamins you are dealing with. The RDA is the minimum determined to keep 95% of the healthy population from having symptoms of deficiency. Us sick people need more.  The Fact Sheet for Health Professional from NIH are a good start to dive deeper.  For example: Thiamin Fact Sheet for Health Professionals

This is really helpful, thanks so much!!

[knitty kitty]

On 7/1/2022 at 5:28 AM, MrsTurner said:

Wow, Thank you so much for taking the time to write such a detailed response!!!

I get written off as a hypochondriac with anxiety at every appointment, so it's comforting to hear I'm not alone, although I do hope you are feeling well again now!  My GP can't even speak to me until the 19th July for a phone appointment, even with all the symptoms and concerns I've mentioned above- it's not that important (If they had to live with it I'm sure they'd see the other side).  I've bought some OTC B Vitamins and Vit D, and I'm already taking iron and Vitamin C so if it is based on deficiencies I'm hoping they are strong enough to start doing something until I can get some sort of response from the GP about it. 

I've lost all faith in medical professionals though now. None of my Drs suspected anything to do with Gluten either - it was me who researched for weeks and weeks non stop and asked for the test and now the diet seems to be working, to a degree, but obviously there are still things happening, and deficiencies might just make sense.

Thank you! 

Be aware that blood tests for vitamin deficiencies will reflect the vitamins supplements you are taking.  You may want to wait your doctor visit before taking the supplements.  

Yes, I'm feeling much better now.  It's still heart rending to see others suffer for lack of basic vitamins.  

Keep us posted on your progress!

[Blue-Sky]

 If you get the right bacteria it can help with your symptoms if the symptoms are caused by an autoimmune disease or by IBS.

It is easy to become deficient in Thiamine but other deficiencies are also possible:

https://onlinelibrary.wiley.com/doi/10.1111/jgh.15830

Pectin (a soluble fiber):

https://pubmed.ncbi.nlm.nih.gov/25809332/

Acacia gum:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6077585/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435782/

Guar gum:

https://pubmed.ncbi.nlm.nih.gov/16413751/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6769658/

https://open.library.ubc.ca/soa/cIRcle/collections/ubctheses/24/items/1.0378179

If you get the right fiber and bacteria and take probiotics to boost short chain fatty acids I think it is likely to help limit yeast overgrowth or inflammation in other parts of the digestive tract. The ITIS diet is a modified Mediterranean meant for helping with RA. It was tested successfully on a few people and now they are doing a larger clinical trial. It also reduced fatigue though and other symptoms associated with it. It is kind of similar to the aip diet but also different. It included Chia seeds and fruit and vegetable smoothies and soups as sources of fiber.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997513/

[MrsTurner]

On 7/4/2022 at 5:24 AM, Blue_Sky said:

 If you get the right bacteria it can help with your symptoms if the symptoms are caused by an autoimmune disease or by IBS.

It is easy to become deficient in Thiamine but other deficiencies are also possible:

https://onlinelibrary.wiley.com/doi/10.1111/jgh.15830

Pectin (a soluble fiber):

https://pubmed.ncbi.nlm.nih.gov/25809332/

Acacia gum:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6077585/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435782/

Guar gum:

https://pubmed.ncbi.nlm.nih.gov/16413751/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6769658/

https://open.library.ubc.ca/soa/cIRcle/collections/ubctheses/24/items/1.0378179

If you get the right fiber and bacteria and take probiotics to boost short chain fatty acids I think it is likely to help limit yeast overgrowth or inflammation in other parts of the digestive tract. The ITIS diet is a modified Mediterranean meant for helping with RA. It was tested successfully on a few people and now they are doing a larger clinical trial. It also reduced fatigue though and other symptoms associated with it. It is kind of similar to the aip diet but also different. It included Chia seeds and fruit and vegetable smoothies and soups as sources of fiber.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997513/

Thank you so much for all your advice!

[MrsTurner]

So, as a little update -

I started my gluten-free diet two weeks ago now.

Some things seem to be definitely improving:

• decreased joint pain and swelling (I can wear my wedding ring for the first time in about 6 months!)
• less bloating, less wind, less constipation
• less rib pain 
• much less nausea (as in not constant) although I did wake up one morning feeling sick to my stomach and couldn't pin point why.
• The constant hunger I had at the start has definitely eased.

However, some things aren't budging, or they seemed to get better at first and have come back again. 

Given that some things are markedly better, I do think I have a sensitivity to gluten, despite my negative test, so I'm now considering whether my healing just isn't a linear improvement, or perhaps I've been glutened in my first week? 

My husband and son aren't eating gluten-free and my in-laws visited at the weekend (because everything is so new it was hard to enforce things like them washing hands between touching bread and touching a cupboard door for example), so I think cross-contamination could have been easy. I'm also still eating gluten-free oats, dairy and corn, (and probably soy, but I haven't really checked) so my thoughts were to cut down on those as others have suggested there's a likelihood of sensitivity to those things too.  Other ideas I had considered were that the neurological symptoms might take longer to disappear than the gastro symptoms and general inflammation- or that the neurological symptoms may be due to underlying deficiencies , as so many people have suggested, so maybe they will just take longer to improve over time on the right supplements.

I will say, I feel quite anxious in these early days - scared to contaminate, always cleaning and washing hands etc. I've bought my own pans etc, but meal planning and cooking for the family and avoiding contamination has become a little stressful and I can feel it taking its toll.  Hopefully as time goes by things will become easier.

 

Just thought I would update anyway and say thanks to everyone who has reached out on my journey so far. It's all been very much appreciated. I've got lots to learn!

[Suzisqueue]

On 7/5/2022 at 4:53 AM, MrsTurner said:

So, as a little update -

I started my gluten-free diet two weeks ago now.

Some things seem to be definitely improving:

• decreased joint pain and swelling (I can wear my wedding ring for the first time in about 6 months!)
• less bloating, less wind, less constipation
• less rib pain 
• much less nausea (as in not constant) although I did wake up one morning feeling sick to my stomach and couldn't pin point why.
• The constant hunger I had at the start has definitely eased.

However, some things aren't budging, or they seemed to get better at first and have come back again. 

Given that some things are markedly better, I do think I have a sensitivity to gluten, despite my negative test, so I'm now considering whether my healing just isn't a linear improvement, or perhaps I've been glutened in my first week? 

My husband and son aren't eating gluten-free and my in-laws visited at the weekend (because everything is so new it was hard to enforce things like them washing hands between touching bread and touching a cupboard door for example), so I think cross-contamination could have been easy. I'm also still eating gluten-free oats, dairy and corn, (and probably soy, but I haven't really checked) so my thoughts were to cut down on those as others have suggested there's a likelihood of sensitivity to those things too.  Other ideas I had considered were that the neurological symptoms might take longer to disappear than the gastro symptoms and general inflammation- or that the neurological symptoms may be due to underlying deficiencies , as so many people have suggested, so maybe they will just take longer to improve over time on the right supplements.

I will say, I feel quite anxious in these early days - scared to contaminate, always cleaning and washing hands etc. I've bought my own pans etc, but meal planning and cooking for the family and avoiding contamination has become a little stressful and I can feel it taking its toll.  Hopefully as time goes by things will become easier.

 

Just thought I would update anyway and say thanks to everyone who has reached out on my journey so far. It's all been very much appreciated. I've got lots to learn!

It can take a long time to improve you guts with Celiace. Months to years. I've been gluten free for 15 years now. I've never really freaked out to much on pans, and cross-contamination because, yes, it drives you crazy. You'll always be getting some gluten somewhere. Remember rice and oats do contain gluten as well. I'd suggest sticking to monocot rather than dicot grains. (I use tapioca and garbonzo bean flour mostly) Yay, pizza!! lol

My endocrinologist suggested using 'Pancreatin" enzymes with food. If you are exposed to gluten it will help (and other bad molecules in food).

The vagal nerve actually goes from the stomach to the brain, not the other way around. Most of our serotonin, dopamine and other brain chemicals are created by the neuroenteric system (guts), and directly related to psychological well being. Feed the good microflora and not the bad and find a good balance.

Trying the FODMAP will help you pinpoint the bad stuff - you may be allergic to other food that continue to give you reactions.

Hope you feel better!!

Peace!! ; )

[trents]

20 minutes ago, Suzisqueue said:

 Remember rice and oats do contain gluten as well. 

I do not think this is true. They main contain protein chains that are similar to the gluten found in wheat, barley and rye but technically speaking they are not gluten. However, you do occasionally here of people referring to these similar proteins as "rice gluten" or "oat gluten" or "corn gluten". Strictly speaking, however, it is a misnomer.

[Suzisqueue]

2 minutes ago, trents said:

I do not think this is true. They main contain protein chains that are similar to the gluten found in wheat, barley and rye but technically speaking they are not gluten. However, you do occasionally here of people referring to these similar proteins as "rice gluten" or "oat gluten" or "corn gluten". Strictly speaking, however, it is a misnomer.

Don't think that is the science. We can agree to disagree. Everyone should do their own research. ; )

Blurb copied from Google:

The names or these groups are derived from the number of cotyledons or seed leaves that the embryonic seedling has within its seed. A monocot, which an abbreviation for monocotyledon, will have only one cotyledon and a dicot, or dicotyledon, will have two cotyledons. 

The genetic structure of dicots are all very similar. The 'proteins' for gluten are contained in them all. Certainly, that is my opinion, but damn, I've done a bunch of research. Gluten gives me seizures. It's a deal for me.