Testing for comorbid auto-immune disorders?

[bostonceliacer]

Tl;dr Any experience asking for a battery of auto-immune disorder tests? How challenging was this? Any tips?

——

Hi all, I have been on a strict gluten free diet for the past year and half since I was diagnosed with celiac at 24. So many of my symptoms - including chronic stomach pain, brain fog, dark circles under eyes - have drastically improved.

Still, I have chronic exhaustion. I also have a host of random allergies (growing up, an allergy to cold weather, sometimes random medications depending on how often I take them). I even develop hives when I am stressed. Could these be signs of a generally off-kilter immune system?

I’ve been dissuaded from further testing by those that say that broad auto-immune disorder testing can be a pain. Even going to my doctor for my celiac diagnosis took way longer than it should have. Lately I’ve been thinking of returning to her and asking about further testing. Mostly because I’m still chronically exhausted (sleeping 12/hour a day, often still tired).

Any advice would be appreciated, re: the best way to do further testing, whether it's worth it, or otherwise

[knitty kitty]

@bostonceliacer,

Welcome to the forum!

We'd love to help!  Have you been checked for vitamin and mineral deficiencies as proper follow up care?  Damage to the small intestine from Celiac can make absorption of nutrients difficult.  

Deficiencies in some of the eight essential  B vitamins can cause fatigue.  The eight B vitamins are called essential because we can't make them, we must consume enough of them daily.  It's rare to have a deficiency in just one vitamin, usually deficiencies occur across the board, so the addition of a B Complex vitamin supplement would be beneficial.  Discuss this with your doctor.

Thiamine Vitamin B1 and Niacin Vitamin B3 are involved in energy production.  Thiamine Hydrochloride, Benfotiamine, and Allithiamine are forms of Thiamine that can boost energy levels.  Taking extra Thiamine in addition to the B Complex is safe because the B vitamins are water soluble and any excess is excreted in urine.  Vitamin B12 deficiency can also cause fatigue.  Autoimmune hives like you describe can be caused by B12 insufficiency.  Symptoms can happen before blood tests show any deficiencies.  Blood tests for vitamin deficiencies are not an accurate measurement of vitamin levels since most of the vitamins are used inside cells.  The stored vitamins inside cells may be depleted so that a certain level of vitamins will stay constant in the bloodstream to feed the brain and heart.

Remember that while gluten containing foods are required by law to be enriched with B vitamins and some minerals lost during processing, gluten free facsimile foods are not.  Since you've eliminated gluten, you've also eliminated those vitamin supplements added to gluten containing products.  So, now you get to choose your own vitamin supplements instead of the cheapo, synthetic, nonbioavailable forms used in food production.  

We're you referred to a nutritionist or dietician?

Do you include dairy in your diet?  Casein the protein in dairy can cause continuing inflammation and damage.  

Is your diet heavy on carbohydrates?  Have you tried the Autoimmune Protocol diet?

Fatigue is a symptom of thyroid problems which can occur with Celiac.  The thyroid uses lots of Thiamine.  Being low in Thiamine can lead to thyroid problems.  

It's best to ensure that the body is receiving all of the vitamins it needs to function properly before looking for other autoimmune diseases.

[trents]

1 hour ago, bostonceliacer said:

Tl;dr Any experience asking for a battery of auto-immune disorder tests? How challenging was this? Any tips?

——

Hi all, I have been on a strict gluten free diet for the past year and half since I was diagnosed with celiac at 24. So many of my symptoms - including chronic stomach pain, brain fog, dark circles under eyes - have drastically improved.

Still, I have chronic exhaustion. I also have a host of random allergies (growing up, an allergy to cold weather, sometimes random medications depending on how often I take them). I even develop hives when I am stressed. Could these be signs of a generally off-kilter immune system?

I’ve been dissuaded from further testing by those that say that broad auto-immune disorder testing can be a pain. Even going to my doctor for my celiac diagnosis took way longer than it should have. Lately I’ve been thinking of returning to her and asking about further testing. Mostly because I’m still chronically exhausted (sleeping 12/hour a day, often still tired).

Any advice would be appreciated, re: the best way to do further testing, whether it's worth it, or otherwise

Celiac disease is seldom an isolated immune disease. It represents dysfunction in the immune system that tends to broaden over time. Having said that, you may also be experiencing vitamin and mineral deficiencies. Have you been checked for anemia? Have you had a CBC and a CMP lately? What age group are you in?

[Scott Adams]

Welcome to the forum! I agree with all the replies above, and just want to recommend this article:

 

[Posterboy]

On 7/26/2022 at 2:19 PM, bostonceliacer said:

Still, I have chronic exhaustion. I also have a host of random allergies (growing up, an allergy to cold weather, sometimes random medications depending on how often I take them). I even develop hives when I am stressed. Could these be signs of a generally off-kilter immune system?

Boston Celiacer,

Here is some research that might help you.

Vitamin D has been shown to help Chronic Hives.  See this research entitled "Vitamin D provides relief for those with chronic hives"

 https://www.unmc.edu/news.cfm?match=12374

You might also try some Magnesium by either taking a Epson Salt Bath or finding a Magnesium Citrate or Magnesium Glycinate....

See also this research about magnesium showing how it can help hives aka Urticaria.....it (Magnesium) does this in part by being a Co-factor in the body for Vitamin D......the same Vitamin D is a Co-factor for Calcium etc.

Entitled "Investigations of magnesium, histamine and immunoglobulins dynamics in acute urticaria" aka Hives etc.

https://pubmed.ncbi.nlm.nih.gov/1983189/

I will quote their whole abstract to make it easier to read/follow....

Abstract

"In 42 urticaria patients, magnesium, histamine and IgE were dosed. Magnesium, IgE and histamine variations were followed in urticaria evolution, during acute phase and clinical remission. We noticed magnesium, histamine, IgE values variations depending on disease evolution and applied therapeutic scheme. Therefore: At disease starting point, histamine presented 3.5 times higher values than the normal ones. The value decreases following a curve which tends to reach normal values during clinical remission. At disease starting point, magnesium presented values under the inferior limit of the normal, 0.5 m mol/L respectively, as a mean. The value increases towards the normal limit during clinical remission. Immunoglobulins E follow a similar curve to histamine one, presenting 1,250 U/L values at the starting point, that, under medication, influence decrease between normal limits (800 U/L), during clinical remission. Analyzing the variations of biochemical parameters, the authors emphasize magnesium substitution treatment in urticaria."

Or IE Magnesium Supplementation can treat Chronic Hives aka medically as Urticaria.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

I hope this is helpful but it is not medical advice.

Posterboy by the grace of God,

[bostonceliacer]

Thanks for your help. I met with a nutritionist when first diagnosed, and again yesterday based on some of these responses. She reviewed my bloodwork and all all of my vitamin and mineral levels were healthy. No anemia. It is helpful to know that blood tests aren’t necessarily reflective of the vitamins inside the cells, which I suspect is the case for me.

As for dairy, I occasionally have regular milk in my coffee, but otherwise have almond milk substitutes since I’ve noticed that dairy can cause bloating for me

I was diagnosed at 24, though I started having symptoms probably around 22 or 23. I am now 26 and still trying to figure all this out…

As supplements I usually take: Magnesium, Super rhodiola, Vitamin D3, Multivitamin

For anyone reading this interesting in follow up my plan is to go back and get more complete bloodwork done, and hopefully incorporate more natural vitamins and minerals into my diet. Will order the B complex vitamin supplement as well

TY!

[trents]

1 hour ago, bostonceliacer said:

Thanks for your help. I met with a nutritionist when first diagnosed, and again yesterday based on some of these responses. She reviewed my bloodwork and all all of my vitamin and mineral levels were healthy. No anemia. It is helpful to know that blood tests aren’t necessarily reflective of the vitamins inside the cells, which I suspect is the case for me.

As for dairy, I occasionally have regular milk in my coffee, but otherwise have almond milk substitutes since I’ve noticed that dairy can cause bloating for me

I was diagnosed at 24, though I started having symptoms probably around 22 or 23. I am now 26 and still trying to figure all this out…

As supplements I usually take: Magnesium, Super rhodiola, Vitamin D3, Multivitamin

For anyone reading this interesting in follow up my plan is to go back and get more complete bloodwork done, and hopefully incorporate more natural vitamins and minerals into my diet. Will order the B complex vitamin supplement as well

TY!

I would add a high potency B-complex to that, gluten free of course. The B-vitamins are water soluble so no danger of overdosing toxicity. Might not help but can't hurt.

Edited July 28, 2022 by trents

[Rogol72]

1 hour ago, bostonceliacer said:

Thanks for your help. I met with a nutritionist when first diagnosed, and again yesterday based on some of these responses. She reviewed my bloodwork and all all of my vitamin and mineral levels were healthy. No anemia. It is helpful to know that blood tests aren’t necessarily reflective of the vitamins inside the cells, which I suspect is the case for me.

As for dairy, I occasionally have regular milk in my coffee, but otherwise have almond milk substitutes since I’ve noticed that dairy can cause bloating for me

I was diagnosed at 24, though I started having symptoms probably around 22 or 23. I am now 26 and still trying to figure all this out…

As supplements I usually take: Magnesium, Super rhodiola, Vitamin D3, Multivitamin

For anyone reading this interesting in follow up my plan is to go back and get more complete bloodwork done, and hopefully incorporate more natural vitamins and minerals into my diet. Will order the B complex vitamin supplement as well

TY!

Something to consider. There can be undeclared gluten in batches of Almond Milk and Rice Milk and other gluten-free products. We had a bulletin issued a few weeks back by the Coeliac Society of Ireland for undeclared gluten in a batch of Rice Milk. I don't touch any substitute milks.

[Beverage]

I felt better after my diagnosis after a few months, but still lagged in energy for a long time  Good quality B vitamins, with methyl forms, like Designs for Health B Supreme, or Procaps Labs High Potency B-Complex really help.  I also take Liquid Health B12 recommended by someone here and B1 oil form Benfotiamine recommended by KnittyKitty.  All that helped but recently, I discovered the flush form of niacin, nicotinic acid, and wow, a huge improvement in energy.  I'm 65 (66 on Monday) and am stronger and can do more hard work than I have in decades. 

Look for the flush niacin that people complain gives them a flush, that does not say slow release or anything like that, not niacin in form of niacinamide (mide's are synthetic or modified forms of vitamins and that's now what you want). Flush niacin has been around for years, used to lower bad cholesterol and raise good, lots of benefits. I tried it before I got covid in January, then increased a bit to recover after covid and recovered way faster than anyone around me, faster than any vax'd or unvax'd friends.

Start at like 100mg nicotinic acid, the first flush is the worst, red all over, really warm, may be itchey.  But after that, it should be a nice warm cozy flush. I was taking 500mg before I got covid, then after I increased to 2000mg for a few days and bounced back really quickly. Now I'm sticking with about 1000mg about 5 days a week, this dose for me now is barely a flush and no itch.

[trents]

https://ods.od.nih.gov/factsheets/Niacin-HealthProfessional/#:~:text=High doses of nicotinic acid,12%2C28%2C36].

 "High doses of nicotinic acid taken over months or years can also be hepatotoxic; effects can include increased levels of liver enzymes; hepatic dysfunction resulting in fatigue, nausea, and anorexia; hepatitis; and acute liver failure [2,12,28,36]. Hepatotoxicity is more likely to occur with the use of extended-release forms of nicotinic acid [12,37,38]."

[knitty kitty]

Niacinamide is NOT the synthetic form of Niacin.   

"...not niacin in form of niacinamide (mide's are synthetic or modified forms of vitamins and that's now what you want)."

There's different forms of Niacin that do different things.  Niacin as nicotinic acid will cause flushing.  BUT Niacinamide does not cause flushing.  Our bodies can turn Niacin into Niacinamide and tryptophan within our bodies. 

Here are some articles...

The Influence of Nicotinamide on Health and Disease in the Central Nervous System

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5966847/

And...

Role of Nicotinamide in DNA Damage, Mutagenesis, and DNA Repair

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2915624/

And...

Niacin in the Central Nervous System: An Update of Biological Aspects and Clinical Applications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412771/

 

 

[Posterboy]

2 hours ago, knitty kitty said:

Niacinamide is NOT the synthetic form of Niacin.   

 

2 hours ago, knitty kitty said:

There's different forms of Niacin that do different things.  Niacin as nicotinic acid will cause flushing.  BUT Niacinamide does not cause flushing.  Our bodies can turn Niacin into Niacinamide and tryptophan within our bodies. 

To all,

I was going to say the same thing but Knitty Kitty beat me too it....

I wrote a posterboy blog post that might be helpful to you Beverage and congratulations on finding Niacin! I think you will notice a great improvement in your health if you can/will keep it up for at least 3 to 4 months!

I think you will find a similar benefit from taking Magnesium Citrate with meals as well!

Here is the reference article that explains how the "Niacin Flush" can be healthy and helpful to us!

https://life-enhancement.com/pages/why-the-niacin-flush-may-be-surprisingly-beneficial-to-your-health

As always “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2: 7 this included.

I hope this is helpful but it is not medical advice.

Posterboy by the grace of God