Possible Celiac?

[VictoriaSmith]

8 hours ago, knitty kitty said:

@VictoriaSmith and all,

I've experienced Gastrointestinal Beriberi and Wernicke's Encephalopathy due to Thiamine deficiency.  The symptoms I've had and the symptoms you are describing sound very similar.  See for yourselves.  Here are some scientific studies done on Thiamine deficiency.

Starvation-induced diplopia and weakness: a case of beriberi and Wernicke’s encephalopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6326289/

And...

Gastrointestinal beriberi: a forme fruste of Wernicke's encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

And...about niacin deficiency...because you're probably deficient in more than one vitamin or mineral with Celiac Disease malabsorption....

https://www.ncbi.nlm.nih.gov/books/NBK557728/

 

Those were all very interesting and informative reads, thank you! I bought some Thiamine yesterday and plan to start taking it to see if there are any improvements. Hopefully I get some relief somewhere. 

Some of the inital diagnoses the patients received when all they needed was Thiamine is a scary thought. 

[VictoriaSmith]

I do have my info on my last labs taken. I am curious as to why it says abnormal on the Metabolic Panel, yet 2 doctors have said all looks normal. I'm unfamiliar with alot listed on the labs. I can't get an image to upload due to file size so here's all the results as they're listed. Sorry if its long. 

•(Metabolic Panel - Abnormal)

Sodium- 140

Potassium- 3.8

Chloride- 104

CO2- 26

Anion Gap- 10

BUN- 5(*)

Creatine- 0.73

Glucose- 96

Calcium- 9.5

Albumin- 4.4

Total Protein- 7.1

Alkaline Phosphatase- 61

ALT- 18

AST- 18

Globulin- 2.7

A/G Ratio- 1.63(*)

Bilirubin Total- 0.5

eGFR Non-African- 111

eGFR African- 129

•(Thyroid - Normal)

Thyroid (TSH)- 1.52

•(Troponin I - Normal)

Troponin I- <0.30

•(CBC without Differential- Normal)

WBC- 8.7

RBC- 4.66

Hemoglobin- 14.9

Hematocrit- 44.4

MCV- 95.3

MCH- 32.0

MCHC- 33.6

RDW- 11.9

Platelet Count- 249

MPV- 10.2

[knitty kitty]

17 hours ago, VictoriaSmith said:

Those were all very interesting and informative reads, thank you! I bought some Thiamine yesterday and plan to start taking it to see if there are any improvements. Hopefully I get some relief somewhere. 

Some of the inital diagnoses the patients received when all they needed was Thiamine is a scary thought. 

Glad to hear you're trying thiamine!  You may want to pick up a magnesium citrate supplement, too.  Magnesium works as a cofactor with thiamine.  And consider a B Complex supplement, as well, to make sure you get all eight B vitamins.  Thiamine and the other B vitamins all need each other to function properly.

Yes, the doctors' ignorance of the symptoms of thiamine deficiency is scary.  It was scary when I went through it.  

Please do keep us posted on your progress! 

[VictoriaSmith]

6 hours ago, knitty kitty said:

Glad to hear you're trying thiamine!  You may want to pick up a magnesium citrate supplement, too.  Magnesium works as a cofactor with thiamine.  And consider a B Complex supplement, as well, to make sure you get all eight B vitamins.  Thiamine and the other B vitamins all need each other to function properly.

Yes, the doctors' ignorance of the symptoms of thiamine deficiency is scary.  It was scary when I went through it.  

Please do keep us posted on your progress! 

I had just been reading on magnesium! Definitely going to add it along with the B Complex as well. 

You'd think they'd be more knowledgeable about the vitamins/minerals that keep the body functioning, considering everything else they learn. Goes to show what you learn in books can only take you so far. 

Of course my husband had a doctor that didn't belive in the properties of pro-biotics, even with him being on Vancomycin through a PICC Line. That baffled me. 

 

I'll definitely keep everyone updated on my progress. I'm hoping to see some improvements soon.

[VictoriaSmith]

My labs came back from the last doctor visit. My ANA tested negative, Rheumatoid Factor tested negative, My inflammatory markers were elevated but that was to be expected due to my psoriasis.

So, back to square one with the doctor. 

[knitty kitty]

Thought these might be enlightening...

Diet and Psoriasis: Part 2. Celiac Disease and Role of a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4104239/

And...

Coeliac Disease-Associated Antibodies in Psoriasis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756193/

 

[VictoriaSmith]

17 hours ago, knitty kitty said:

Thought these might be enlightening...

Diet and Psoriasis: Part 2. Celiac Disease and Role of a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4104239/

And...

Coeliac Disease-Associated Antibodies in Psoriasis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756193/

 

That is very enlightening. So people with psoriasis may have elevated levels, but they're not always likely to have celiac disease? I wonder what that means, does that show there may just be a gluten sensitivity? It is interesting to read how we're more susceptible to having celiac disease, you'd think my DR would have had me tested anyways. 

It makes me think why my psoriasis has suddenly flared up the way it has. I had originally gotten sick with what I think was COVID back in January. I felt fine in February, then everything started going downhill in March.

I had been taking Vitamin D for almost 2 years and it had my psoriasis cleared up, even had great Winters when it came to my pain/stiffness. Come March it flared back up full force, but my scalp cleared. Odd considering I've never been able to get it to clear from my scalp. 

[knitty kitty]

Our bodies produce other antibodies than just ttg2, the antibody most suspected Celiacs are tested for.  Ttg6 has recently been recognized as an antibody involved in gluten ataxia.  So maybe they just have not discovered the connection yet.

Did you make any changes in your diet during those times of improvement? 

Things I found helpful with my skin rashes, eczema, DH, etc., is to make sure I get plenty of healthy fats, Omega Threes, as in flax seed oil, hemp oil, olive oil, etc. And Niacin Vitamin B3, Vitamin A and D, and Riboflavin Vitamin B2.  

You know how oil floats on water?  Same principle with our cells.  Every cell has a membrane made of fats to keep the watery stuff inside the cells.  So our skin cells need lots of fats to protect all those water-filled cells inside our bodies.  Very simplified explanation, I know, but healthy fats will help keep our skin from flaking off.  

I use Tallow Balm to soften and nourish those flaky patches.  It's all natural and gluten free.

https://www.vintagetradition.com/products/

Edited May 29, 2022 by knitty kitty
Typo correction

[Wheatwacked]

Do you have vitamin D plasma test results and what dose D are you taking? Like many other immune diseases psoriasis is responsive to vitamin D. 

In 2015, a few months after starting GFD I started taking D3. Believing the anti vitamine hype I was cautious. I started at 1000 IU (25 mcg) a day and every few days increased another 1000. I really did not notice any benefit until my fourth day at 10,000 a day and my all my years of worsening Seasonal Depressive Disorder (30 years and pretty much year-round at that point, melted away. By Sept 2018 my plasma D was 45 ng/ml. I took me 3 years at 10000 IU a day to get there. By Aug 2021 it was 87 ng/ml and in Jan 2022 80 ng/ml. My doctor agrees I should continue. It seems like homeostasis for vitamin D is around 80 ng/ml. I read that the normal plasma for a lifeguard in August is 80 ng/ml. My son diagnosed Celiac Disease as an infant right after weaning is a 46-year-old Ocean Lifeguard in Southern Florida (so plenty of sun), and his vitamin D last August is low (less than 29 ng/ml). His doctor suggested he take 300 IU a day! Most doctors do not know vitamins.

Vitamin D and its role in psoriasis: An overview of the dermatologist and nutritionist  "Severe psoriasis has been associated with nutritional deficiencies because of an accelerated loss of nutrients, in particular of vitamin D, from the hyperproliferation and desquamation of the epidermal layer of skin ...Findings from randomised placebo-controlled trials conducted during the winter have shown that each 1 mg of supplemental vitamin D is associated with an increase in serum 25(OH)D of between 0.7 nmol/L [100] and 2 nmol/L ...Several studies have observed the safety concerns regarding the dosage of vitamin D supplementation. However, oral vitamin D intakes of up to 10,000 IU daily were not associated with any harmful effects...Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the U.S. Recommended Dietary Allowance (RDA) for most adults of 600 IU of vitamin D a day."

 What is vitamin D toxicity? Should I be worried about taking supplements?   Taking 60,000 [the math: 100 times the RDA] international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the U.S. Recommended Dietary Allowance (RDA) for most adults of 600 IU of vitamin D a day.

[VictoriaSmith]

On 5/29/2022 at 11:06 AM, knitty kitty said:

Our bodies produce other antibodies than just ttg2, the antibody most suspected Celiacs are tested for.  Ttg6 has recently been recognized as an antibody involved in gluten ataxia.  So maybe they just have not discovered the connection yet.

Did you make any changes in your diet during those times of improvement? 

Things I found helpful with my skin rashes, eczema, DH, etc., is to make sure I get plenty of healthy fats, Omega Threes, as in flax seed oil, hemp oil, olive oil, etc. And Niacin Vitamin B3, Vitamin A and D, and Riboflavin Vitamin B2.  

You know how oil floats on water?  Same principle with our cells.  Every cell has a membrane made of fats to keep the watery stuff inside the cells.  So our skin cells need lots of fats to protect all those water-filled cells inside our bodies.  Very simplified explanation, I know, but healthy fats will help keep our skin from flaking off.  

I use Tallow Balm to soften and nourish those flaky patches.  It's all natural and gluten free.

https://www.vintagetradition.com/products/

I hope they start making the connection soon. For a disease, you'd think more doctors would know a bit more about it. At least not refer to it as an allergy instead of auto immune. 

I'd hadn't made any changes to my diet then. I've always eaten the same things, which is what threw me off to why I flared up like I did. The only thing I can guess the cause of it was the suspected case of COVID I had at the end of December, beginning of January. I lost my sense of smell for almost a week, and everyone else around me tested positive. 

I'm definitely going to try that, thank you! I've always had difficulty finding things to help my psoriasis. I used to use a Coconut Oil/Goats Milk soap made by a local man with plaque psoriasis. It had greatly helped mine, he unfortunately passed away a few years back. 

[VictoriaSmith]

On 5/30/2022 at 12:58 PM, Wheatwacked said:

Do you have vitamin D plasma test results and what dose D are you taking? Like many other immune diseases psoriasis is responsive to vitamin D. 

In 2015, a few months after starting GFD I started taking D3. Believing the anti vitamine hype I was cautious. I started at 1000 IU (25 mcg) a day and every few days increased another 1000. I really did not notice any benefit until my fourth day at 10,000 a day and my all my years of worsening Seasonal Depressive Disorder (30 years and pretty much year-round at that point, melted away. By Sept 2018 my plasma D was 45 ng/ml. I took me 3 years at 10000 IU a day to get there. By Aug 2021 it was 87 ng/ml and in Jan 2022 80 ng/ml. My doctor agrees I should continue. It seems like homeostasis for vitamin D is around 80 ng/ml. I read that the normal plasma for a lifeguard in August is 80 ng/ml. My son diagnosed Celiac Disease as an infant right after weaning is a 46-year-old Ocean Lifeguard in Southern Florida (so plenty of sun), and his vitamin D last August is low (less than 29 ng/ml). His doctor suggested he take 300 IU a day! Most doctors do not know vitamins.

Vitamin D and its role in psoriasis: An overview of the dermatologist and nutritionist  "Severe psoriasis has been associated with nutritional deficiencies because of an accelerated loss of nutrients, in particular of vitamin D, from the hyperproliferation and desquamation of the epidermal layer of skin ...Findings from randomised placebo-controlled trials conducted during the winter have shown that each 1 mg of supplemental vitamin D is associated with an increase in serum 25(OH)D of between 0.7 nmol/L [100] and 2 nmol/L ...Several studies have observed the safety concerns regarding the dosage of vitamin D supplementation. However, oral vitamin D intakes of up to 10,000 IU daily were not associated with any harmful effects...Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the U.S. Recommended Dietary Allowance (RDA) for most adults of 600 IU of vitamin D a day."

 What is vitamin D toxicity? Should I be worried about taking supplements?   Taking 60,000 [the math: 100 times the RDA] international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the U.S. Recommended Dietary Allowance (RDA) for most adults of 600 IU of vitamin D a day.

I didn't recieve vitamin D plasma results. They ran a basic metabolic and blood count on me, Doctor said all was normal there. I'm definitely going to request a vitamin/minerals test to be done. Especially since the other labs (C Reactive Protien, Sedimentation Rate, ANA, CCP, and Rheumatoid Factor) all came back negative or just slightly elevated.

My C Reactive Protien was 1.1 mg/L (reference <8.0) and Sedimentation Rate is elevated at 22 mm. 

For Vitamin D, I had been taking 400 IU once a day for 3 years. It had cleared my psoriasis up, and definitely helped my seasonal depression as well. The winters were so much better. I normally flare up come the colder months, which was odd that I flared up this spring.

With the tingling I've been experiencing in my legs/back of head/neck and sometimes my forearms and toes going numb on left foot, I stopped taking all of my vitamins. (D, C and B12) Since I have no idea why I'm experiencing it. It was more severe before I'd stopped the vitamins, but it's still there. 

[VictoriaSmith]

On 5/29/2022 at 11:06 AM, knitty kitty said:

Our bodies produce other antibodies than just ttg2, the antibody most suspected Celiacs are tested for.  Ttg6 has recently been recognized as an antibody involved in gluten ataxia.  So maybe they just have not discovered the connection yet.

Did you make any changes in your diet during those times of improvement? 

Things I found helpful with my skin rashes, eczema, DH, etc., is to make sure I get plenty of healthy fats, Omega Threes, as in flax seed oil, hemp oil, olive oil, etc. And Niacin Vitamin B3, Vitamin A and D, and Riboflavin Vitamin B2.  

You know how oil floats on water?  Same principle with our cells.  Every cell has a membrane made of fats to keep the watery stuff inside the cells.  So our skin cells need lots of fats to protect all those water-filled cells inside our bodies.  Very simplified explanation, I know, but healthy fats will help keep our skin from flaking off.  

I use Tallow Balm to soften and nourish those flaky patches.  It's all natural and gluten free.

https://www.vintagetradition.com/products/

Which Tallow Balm do you use? I noticed they have quite a few different scents. 

[knitty kitty]

2 hours ago, VictoriaSmith said:

Which Tallow Balm do you use? I noticed they have quite a few different scents. 

I have Vanilla Bean, Serene Spirit, Campfire Glow, and Rugged Cliff.

Vintage Traditions has small sample jars available.  I often order those if I'm uncertain about a scent, but I've enjoyed all the ones I've tried so far.  

Only a small dab is necessary.  A little goes a long way.  And the tallow balm is absorbed by the skin very quickly.

I hated using commercial lotions and creams because they left a greasy residue on my hands.  I'd have to wash my hands before I picked up my needlework so as not to leave greasy smears on my work.

Not so with Tallow Balm.  It is absorbed into the skin quickly leaving my fingers soft and the wonderful scents lingers for hours.  And my tatting, embroidery and knitting are not ruined nor stained.  

[C4Celiac]

A dab will do ya

[Wheatwacked]

9 hours ago, VictoriaSmith said:

For Vitamin D, I had been taking 400 IU once a day for 3 years. It had cleared my psoriasis up, and definitely helped my seasonal depression as well. The winters were so much better. I normally flare up come the colder months, which was odd that I flared up this spring.

Seasonal Affective Disorder is caused by low D. Apparantly so is your psoriasis.  For some reason they tried light therapy and off hand dismissed treatment with D.  Seasonal affective disorder treatment: Choosing a light box Print

[Wheatwacked]

4 hours ago, C4Celiac said:

A dab will do ya

Brylcream, a little dab will do you. 

Brylcreem Hair Cream Commercial song - YouTube

Now I've got that darn song in my head.

Edited June 6, 2022 by Wheatwacked

[VictoriaSmith]

55 minutes ago, Wheatwacked said:

Seasonal Affective Disorder is caused by low D. Apparantly so is your psoriasis.  For some reason they tried light therapy and off hand dismissed treatment with D.  Seasonal affective disorder treatment: Choosing a light box Print

That doesn't surprise me. Of all the dermatologists I saw as a kid I had only one tell me Vitamin D was the best thing for my psoriasis, not some ointment or sticking me in a UV bed everyday that did absolutely nothing for it. Lol 

[trents]

Sunlight on the skin produces D naturally so the right light box could imitate that effect. But it would need to be a light box that produced the right spectrum and it would have to be super bright. Taking a D3 supplement is probably cheaper and more convenient.

[Wheatwacked]

I have no clinical proof, lots of coincidences, but it appears the homeostasis level of 25-hydroxy vitamin D is 80 ng/ml. Up to that we store it up for the sunless months.

Control of metabolism of vitamin D to its active metabolite, 1,25(OH)2D, is exerted primarily at the renal level where calcium, phosphorus, parathyroid hormone, FGF23, and 1,25(OH)2D regulate the levels of 1,25(OH)2D produced.   https://www.ncbi.nlm.nih.gov/books/NBK278935/#:~:text=The metabolism of vitamin D,main source for 1α-hydroxylation.

[Wheatwacked]

12 minutes ago, trents said:

Taking a D3 supplement is probably cheaper and more convenient.

If you and I figure it out, what is the medical industry doing with it research funds?

[VictoriaSmith]

12 hours ago, trents said:

Sunlight on the skin produces D naturally so the right light box could imitate that effect. But it would need to be a light box that produced the right spectrum and it would have to be super bright. Taking a D3 supplement is probably cheaper and more convenient.

I would say it is. I used to lay out in the sun (with a good sunscreen, never to tan) when I was much younger, because it did help with my psoriasis. I became too worried about prolonged exposure and skin cancer to keep relying on it alone.

It's like the light therapy bed they stuck me in as a kid, who knows what that did in regards to my chances of developing skin cancer later in life. Some of the initial treatments of psoriasis weren't very safe or effective. They still aren't in my opinion. Taking a immune system suppressor or blocker terrifies me. 

[VictoriaSmith]

12 hours ago, Wheatwacked said:

If you and I figure it out, what is the medical industry doing with it research funds?

It's like a lot of research done today, I don't fully trust it's going to what they're supposed to be doing with it. Granted some have made incredible discoveries with research. 

[VictoriaSmith]

20 hours ago, knitty kitty said:

I have Vanilla Bean, Serene Spirit, Campfire Glow, and Rugged Cliff.

Vintage Traditions has small sample jars available.  I often order those if I'm uncertain about a scent, but I've enjoyed all the ones I've tried so far.  

Only a small dab is necessary.  A little goes a long way.  And the tallow balm is absorbed by the skin very quickly.

I hated using commercial lotions and creams because they left a greasy residue on my hands.  I'd have to wash my hands before I picked up my needlework so as not to leave greasy smears on my work.

Not so with Tallow Balm.  It is absorbed into the skin quickly leaving my fingers soft and the wonderful scents lingers for hours.  And my tatting, embroidery and knitting are not ruined nor stained.  

Thank you! I'll definitely get some of the samples to try. Anything that doesn't leave a greasy oily feel and residue is fine by me. I crochet and draw/paint as well. 

I stopped using all commercial made products for psoriasis for that reason, even coconut oil. T-gel did help with my scalp tremendously, but it stunk to high heavens. 

[VictoriaSmith]

I finished wearing the heart monitor for a week on Tuesday and turned it in. The Heart Center told me could take up to 3 weeks to get my results back.

Hopefully all is well there. At this point I'm just ready for some sort of answers though.

 Curiosity got the best of me and I have been trying a GFD for almost 3 weeks now since I don't go back to Dr til the 25th of July. The D has totally stopped, and I've had some better days when it comes to the off balanced/floaty feeling (Just learned this feeling is called Ataxia.) Tingling is still there, but my toes on left foot have been going numb less.

I did have bad last couple of days with the off balanced/floaty feeling and horrible headaches. I've felt somewhat better today in those regards. Not sure if I got glutened or not, as I'm still so new to test running the diet.

[Wheatwacked]

50 minutes ago, VictoriaSmith said:

The D has totally stopped, and I've had some better days when it comes to the off balanced/floaty feeling

Good to hear.  Isn't it amazing how quick the response is? Whatever diagnosis they choose to come up with, I think GFD Is the way to go. 

Low A/G can be an indicator of low IgG and I believe low IgG can return inaccutate Celiac blood tests? 

Quote

On 5/25/2022 at 8:39 AM, VictoriaSmith said:

A/G Ratio- 1.63(*) [1.5]; Albumin- 4.4 ]3.5-5.5]; Globulin- 2.7 [2-3.5]; Total Protein- 7.1 [5.5-9.0]

Normally, there is a little more albumin than globulins, giving a normal A/G ratio of slightly over 1.  A high A/G ratio suggests underproduction of immunoglobulins as may be seen in some genetic deficiencies and in some leukemias.Total Protein and Albumin/Globulin (A/G) Ratio | Labcorp

The albumin to globulin ratio (A/G) is a non-specific indicator of disease processes. It can be decreased in ulcerative colitis, burns, kidney disease, cirrhosis, and multiple myeloma. The adult reference range is 1.5. [http://www.stat.unc.edu/visitors/temp/Health/Thyroid/blood_test_results.htm]Source: Regenstrief LOINC