Wrongly diagnosed with Celiac Disease?

[Rafea]

On 2/1/2021 at 2:34 AM, Scott Adams said:

@Rafea are you on a gluten-free diet? I think in India a big issue might be contamination in spices and other things, for example I got some psyllium fiber powder from India and it tested positive for gluten.

@Scott Adams may be.... But i ve cut oht gluten completely from my diet..

can u please tell me how to test for a gluten in any food???

[Scott Adams]

You haven't mentioned how long you've been gluten-free. It can take months for recovery, and with DH it can take weeks for an outbreak to go away, which can be triggered by even tiny amounts of contamination.

[knitty kitty]

Rafea, 

Niacin deficiency causes an itchy skin rash.  

Other vitamin deficiencies (Vitamin B12, thiamine, B6) can affect the nerves that can cause tingling that feels like itching. 

What does your rash look like? Dry flaky? Wet, weepy? 

[Rafea]

18 hours ago, Scott Adams said:

You haven't mentioned how long you've been gluten-free. It can take months for recovery, and with DH it can take weeks for an outbreak to go away, which can be triggered by even tiny amounts of contamination.

@Scott Adamsi ve no intestinal symptoms just DH... it has been almost  3 months since i m on gluten free diet and since 1 month i am taking dapsone for it... still extreme itching 

[Rafea]

16 hours ago, knitty kitty said:

Rafea, 

Niacin deficiency causes an itchy skin rash.  

Other vitamin deficiencies (Vitamin B12, thiamine, B6) can affect the nerves that can cause tingling that feels like itching. 

What does your rash look like? Dry flaky? Wet, weepy? 

@knitty kittyi m not having skin rash but firm nodules all over my body that have scabs over it and are extremely itchy and bleeds when in scratch them

[knitty kitty]

Rafea, 

I know how itchy and miserable DH can make you feel.  I have DH myself.

I know that taking Niacin helped me when I had very bad DH outbreaks.   Niacin and Nicotinic Acid (not related to nicotine in tobacco, just a different form of Niacin that does not cause flushing) REALLY do work to alleviate the itchiness and heal your skin!

 

Here's some studies done on the effectiveness of Niacin in helping DH.

 

"Nicotinic acid therapy of dermatitis herpetiformis"

https://pubmed.ncbi.nlm.nih.gov/15412276/

(Click on the red "free article" link).

And...

"Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide"

https://pubmed.ncbi.nlm.nih.gov/30390734/

 

Niacin is cheap, available without a prescription here, and very effective in relieving DH symptoms.  

"Niacin. Fact Sheet for Consumers"

https://ods.od.nih.gov/factsheets/Niacin-Consumer/

Riboflavin (B2) and Pyridoxine(B6) help Niacin (B3) do its thing.  Consider taking a B Complex vitamin in addition to Niacin as "nicotinamide (500 mg three times daily)" in the study above.  I took the niacin without the tetracycline, and my DH improved dramatically.

Hope this helps

[Rafea]

1 hour ago, knitty kitty said:

Rafea, 

I know how itchy and miserable DH can make you feel.  I have DH myself.

I know that taking Niacin helped me when I had very bad DH outbreaks.   Niacin and Nicotinic Acid (not related to nicotine in tobacco, just a different form of Niacin that does not cause flushing) REALLY do work to alleviate the itchiness and heal your skin!

 

Here's some studies done on the effectiveness of Niacin in helping DH.

 

"Nicotinic acid therapy of dermatitis herpetiformis"

https://pubmed.ncbi.nlm.nih.gov/15412276/

(Click on the red "free article" link).

And...

"Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide"

https://pubmed.ncbi.nlm.nih.gov/30390734/

 

Niacin is cheap, available without a prescription here, and very effective in relieving DH symptoms.  

"Niacin. Fact Sheet for Consumers"

https://ods.od.nih.gov/factsheets/Niacin-Consumer/

Riboflavin (B2) and Pyridoxine(B6) help Niacin (B3) do its thing.  Consider taking a B Complex vitamin in addition to Niacin as "nicotinamide (500 mg three times daily)" in the study above.  I took the niacin without the tetracycline, and my DH improved dramatically.

Hope this helps

@knitty kittythx a ton.... i am surely gonna add niacin in my daily supplements....

I am lil confused about about my diagnosis

i  ve no intestinal symptoms just DH... it has been almost  3 months since i m on gluten free diet and since 1 month i am taking dapsone for it... 

Why there is still no improvement in my skin as expected.... why dapsone is nit working to the level it should work...

my anti ttg  is normal... my IgA level is normal... no celiac disease has been detected as per my test reports then how come i m diagnosed with DH...

Among 3 biopsy reports only 1 shows DH... rest no shows Depisits of IgA granules in skin...

The place i m from has no sufficient means of diagnosis...

taking dapsone is not good for me since I am getting married in march...its all quite depressing for me...😞😞😞

[knitty kitty]

You can have Celiac Disease and DH without gastrointestinal symptoms.  Sometimes DH is the only symptom.  It can be difficult to properly biopsy and diagnose DH because the sample must come from near a DH blister, not on top of it.  So having one positive is all you need.  

Having normal anti ttg and IgA is great!  Shows you're probably not getting glutened.  Different antibodies cause the DH, so those tests won't reflect the antibodies causing DH.  These DH antibodies can hang around causing problems in the skin for a long time.  

Sulfites in foods and drugs can make DH worse.  Dapsone is a sulfa drug.  It contains sulfites.  Thiamine (Vitamin B1) is needed to process sulfites. 

I was put on sulfa drugs to treat high blood pressure and my DH went crazy!  I added Thiamine to the Niacin, and my skin really healed up.  Thiamine needs magnesium to work properly, so I added a magnesium supplement, too.

There are eight essential B vitamins which need each other to work properly.   B Complex supplements have all eight B vitamins.  When you are deficient in one B vitamin, you are probably deficient in others.  Taking a B Complex will give you all eight.  

Consider a B Complex along with the thiamine and niacin.  B vitamins are water soluble, so any excess is excreted easily in urine.  

Also consider Vitamins A and D which are important to general skin health. 

Hope this helps.

[Posterboy]

Rafea,

You might have developed Pellagra.

People who have SIBO often develop Skin Issues because the over growth of their bacteria in their Small Intestine consumes it all themselves leaving the individual GI sufferer low in Niacin(amide).

Here is a couple of research articles about it.

One entitled [Pellagra and panniculitis induced by chronic bacterial colonisation of the small intestine]

https://pubmed.ncbi.nlm.nih.gov/15798565/

And this one about how Atopic Dermatitis is really Pellagra in disguise often because it can be treated with Niacin aka Vitamin B3 supplementation.

See this research entitled "Pellagra occurring in a patient with atopic dermatitis and food allergy"

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-3083.2006.01871.x

You often see Pellagra in LUPUS because your auto-immune system has gone haywire.

I wrote a Posterboy blog post that might help you!

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

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

Posterboy by the Grace of God,

[BrianG]

I was recently diagnosed with celiacs. My symptoms consist of fatigue, foggy head, and anemia with iron, b12, and folic deficiencies. Is this considered silent celiacs? 
if I stop eating gluten, will my body respond more negatively to it when I do eat it? If that’s the case and my symptoms are manageable, does it stand to reason that I should just keep gluten as a small part of my diet? 

[trents]

Silent celiac disease refers to those who have celiac disease but who are asymptomatic or have minimal symptoms. Fatigue and brain fog are common symptoms of celiac disease but also of gluten sensitivity. Many celiacs are largely asymptomatic, at least for a period of time after onset of the disease. But eventually there is enough damage to body systems or enough discomfort that they finally get it checked out and get a diagnosis. 

It is very common for celiacs to feel worse when first going off gluten. It's kind of a withdrawal. Until you get serious about avoiding all gluten, even traces, you will not experience healing and you will be in this limbo you are now in.

How were you diagnosed? Did you have any bloodwork done? Did you have an endoscopy/biopsy done. Or, did your physician just make this conclusion based on your symptoms alone?

 

[BrianG]

Thank you for this information. 
my doctor diagnosed me through an endoscopy, biopsy, then blood test. I got checked out due to my anemia from a yearly physical. 
I think I def am feeling some withdrawals. 

[trents]

You really need to consider taking a gluten free high potency multivitamin and gluten free B-complex. Vitamin and mineral deficiency goes hand in hand with celiac disease since the damage to the small bowel lining creates nutrient absorption problems. That might be part of why you feel crummy when going off gluten. You are not getting the B vitamins that are added into wheat flour.

[BrianG]

I take b12 but I will add a multi vitamin as well. Is b12 enough or should I take a b complex? 

[trents]

B-complex. The various B vitamins work in concert. But keep taking the B12 as well. Taking high doses of B vitamins is safe since they are water soluble and any excess is just peed out.

[GFinDC]

17 hours ago, BrianG said:

...
if I stop eating gluten, will my body respond more negatively to it when I do eat it? If that’s the case and my symptoms are manageable, does it stand to reason that I should just keep gluten as a small part of my diet? 

Hi BrianG,

No, you shouldn't keep eating a small amount of gluten.  Celiac disease is an AI (auto-immune) condition.  The immune system makes antibodies that attack the body cells, typically the gut lining first.  The immune response kicks off when exposed to very low levels (microscopic) of gluten in the gut.  And the immune response keeps going for weeks to months.  So healing can't happen if you continue to eat even a tiny amount of gluten.

Edited April 2, 2021 by GFinDC

[BrianG]

Okay, that makes sense.  As someone who has mild symptoms, what happens if I eat gluten on vacation or at a special event or something like that?  Can it be a once in a while type thing for someone with mild symptoms?  

[GFinDC]

1 hour ago, BrianG said:

Okay, that makes sense.  As someone who has mild symptoms, what happens if I eat gluten on vacation or at a special event or something like that?  Can it be a once in a while type thing for someone with mild symptoms?  

Hi Brian,

Symptoms don't directly equate to damage in the body.  So mild symptoms can be from a lot of damage.  People are different in their symptoms for celiac disease.  But immune system damage will kill you eventually if you let it go on too long.  Also, our guts tend to start reacting to more foods besides just wheat, rye and barley due to ongoing irritation.  So you may lose the ability to eat a variety of other foods after a while.   Read people's forum signatures to get some idea about that.

Short answer, no, cheating on the gluten-free diet is a no-no.  the gluten-free diet is a medical diet, not a weight-loss diet.

I know the gluten-free diet can be tough at first, but after while our eating habits change and we adapt to it just fine.

It can take 18 months or more to heal the gut after going gluten-free.

Edited April 2, 2021 by GFinDC

[BrianG]

2 minutes ago, GFinDC said:

Hi Brian,

Symptoms don't directly equate to damage in the body.  So mild symptoms can be from a lot of damage.  People are different in their symptoms for celiac disease.  But immune system damage will kill you eventually if you let it go on too long.  Also, our guts tend to start reacting to more foods besides just wheat, rye and barley due to ongoing irritation.  So you may lose the ability to eat a variety of other foods after a while.   Read people's forum signatures to get some idea about that.

Short answer, no, cheating on the gluten-free diet is a no-no.  the gluten-free diet is a medical diet, not a weight-loss diet.

I know the gluten-free diet can be tough at first, but after while our eating habits change and we adapt to it just fine.

I understand, thank you for your advice. I'm new to this, just on day 3 of gluten free and I'm worrying too much.  Also not feeling too great physically and mentally. Maybe gluten withdrawl?