Doctor ran test almost on a whim — tTG-IgA 128?!

[OrangesAndMelons]

18 minutes ago, Alaskaguy said:

Orangesandmelons, I have had those also!  Always on my palms, or on the edges of my palms, or occasionally on the inside of a finger.  Not many times, and not many at one time (often just a single blister), but while they are itchy, they are distinctly different from DH --- for one thing, mine never scab-up, just slowly go away without seeming to break.  But those clear blisters on the palms have not given me even 1% of the grief that I have had from DH, so I usually ignore them and rarely if ever mention them.

I never get them on my palms, thankfully; only on the sides of my fingers and occasionally the backs of them (usually a cluster of at least half a dozen). Which is why dyshidrotic eczema doesn't seem quite right. But I'm not sure they're right for DH either.

Mine break eventually if I scratch them enough, then leave little craters or circles of dry skin. Which also itch like hell ? I have to use my teeth to scratch them to get any relief ?

Skin stuff is weird.

[Alaskaguy]

29 minutes ago, OrangesAndMelons said:

Skin stuff is weird.

You can say that again!

Part of my disdain for doctors, and the medical (I refuse to say "health care") industry more generally, is due to having suffered (and had repeatedly been misdiagnosed, if not treated by doctors with complete disbelief and contempt) in my later teens and early 20s from a rare condition called aquagenic urticaria, in which my entire body would break out in nasty, ugly, intense hives upon merely GETTING WET!  Yes, that included bathing.  It was the only thing I have ever experienced that makes even dermatitis herpetiformis seem like a walk in the park.  Fortunately, it 'only' struck when my body got wet, and usually for not more than one hour afterward.  But while it was happening, it was torturous in the extreme.

[OrangesAndMelons]

Water?! That's… unreasonably inconvenient. Did it happen with sweat?

[Alaskaguy]

4 minutes ago, OrangesAndMelons said:

Water?! That's… unreasonably inconvenient. Did it happen with sweat?

Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation. 

However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.

[squirmingitch]

We call IBS the I Be Stumped non diagnosis. It's a cop out by doctors. IBS is a symptom NOT a diagnosis.

 

Oh AG, how terribly awful!!!!!!!! I've read about that skin condition before but never known anyone who actually had it. OOF!

[Ennis-TX]

Wanted to give a dosing idea with b-vitamins, magnesium, and vitamin D.
I take 1tbsp each of Liquid Health Energy & Stress and Neurological Support with 1 drop 2000iu vitamin D twice daily in a warm beverage before meals.
Magnesium can vary and what is best depends on your bowel habits. If you do not have Diarrhea, and you do not use the restroom at least once a day then you need magnesium Citrate (Natural Vitality Calm) dosed to tolerance. Starting with 2g (1/4tsp), up the dose another 2g a day til you get loose stools then back down the dose 2g. I would take this in the mornings if ou can or in the evenings before a meal.
If you have daily BMs, I would suggest Doctors Best Magnesium glycinate, 1 scoop should do it once or twice a day checking levels. Can be a bit scary or a bit fun, with this one you know if you reach a good dose by your dreams. It will give you VERY vivid dreams. I personally go of citrate and go to glycinate with my gut is a mess like now and the nightly dreams have been quite good. 

These are what I use, I will admit I sometimes take an extra dose of the B vitamins at lunch.  The liquid and drink mix in nature of these is what I love since I take enough pills as it is.

[OrangesAndMelons]

9 hours ago, Alaskaguy said:

Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation. 

However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.

I'd have been tempted to strip off and drive home in underwear ?

[OrangesAndMelons]

15 minutes ago, Ennis_TX said:

Wanted to give a dosing idea with b-vitamins, magnesium, and vitamin D.
I take 1tbsp each of Liquid Health Energy & Stress and Neurological Support with 1 drop 2000iu vitamin D twice daily in a warm beverage before meals.
Magnesium can vary and what is best depends on your bowel habits. If you do not have Diarrhea, and you do not use the restroom at least once a day then you need magnesium Citrate (Natural Vitality Calm) dosed to tolerance. Starting with 2g (1/4tsp), up the dose another 2g a day til you get loose stools then back down the dose 2g. I would take this in the mornings if ou can or in the evenings before a meal.
If you have daily BMs, I would suggest Doctors Best Magnesium glycinate, 1 scoop should do it once or twice a day checking levels. Can be a bit scary or a bit fun, with this one you know if you reach a good dose by your dreams. It will give you VERY vivid dreams. I personally go of citrate and go to glycinate with my gut is a mess like now and the nightly dreams have been quite good. 

These are what I use, I will admit I sometimes take an extra dose of the B vitamins at lunch.  The liquid and drink mix in nature of these is what I love since I take enough pills as it is.

That's a lot of vitamin D!

In term time I basically produce rabbit pellets ? unless I go heavy on the polyols. I practically self-medicate with sugar-free sweets…

The UK supplement market is quite different to the North American one, I think. For now I'm going to hold off on supplements till I know what's going on (hopefully not celiac disease…) and I can talk to my psychiatrist. Thank you for all the info!

[Ennis-TX]

2 minutes ago, OrangesAndMelons said:

That's a lot of vitamin D!

In term time I basically produce rabbit pellets ? unless I go heavy on the polyols. I practically self-medicate with sugar-free sweets…

The UK supplement market is quite different to the North American one, I think. For now I'm going to hold off on supplements till I know what's going on (hopefully not celiac disease…) and I can talk to my psychiatrist. Thank you for all the info!

Funny thing about me and vitamin D, I hardly go outside, and my building live in has a single window with heavy wooden blinds I never open.  I hardly have a chance to produce it naturally.  

I hear you on the sugars, I once thought my excessive erythritol intake was my reason for my loose stools and cut out all sugar alcohols for a 7 day savory cleanse then after went 2 weeks using stevia and monk fruit instead. Had no effect on my BMs.  I spike glucose to any carbs or sugars so I do not eat them, >.> I just make Keto friendly cookies, cakes, etc. over 5 days a week. >.< Baking is my side income, stress relief, and a fun hobby.

I imagine, here in America, our crops are grown in in ways they do not contain the amounts of vitamins they should, our processed gluten foods are sprayed with multivitamins, and our gluten-free food lacks said enrichment making celiacs attempted the SAD (Standard American Diet) even worse off. The supplement industry is big here because many have issues and deficiencies and people are just supplementing instead of eating right or trying to fix their hole filled bucket guts by taking as much as they can. 

[OrangesAndMelons]

10 minutes ago, Ennis_TX said:

Funny thing about me and vitamin D, I hardly go outside, and my building live in has a single window with heavy wooden blinds I never open.  I hardly have a chance to produce it naturally.  

I hear you on the sugars, I once thought my excessive erythritol intake was my reason for my loose stools and cut out all sugar alcohols for a 7 day savory cleanse then after went 2 weeks using stevia and monk fruit instead. Had no effect on my BMs.  I spike glucose to any carbs or sugars so I do not eat them, >.> I just make Keto friendly cookies, cakes, etc. over 5 days a week. >.< Baking is my side income, stress relief, and a fun hobby.

I imagine, here in America, our crops are grown in in ways they do not contain the amounts of vitamins they should, our processed gluten foods are sprayed with multivitamins, and our gluten-free food lacks said enrichment making celiacs attempted the SAD (Standard American Diet) even worse off. The supplement industry is big here because many have issues and deficiencies and people are just supplementing instead of eating right or trying to fix their hole filled bucket guts by taking as much as they can. 

Erythritol is supposed to be BM neutral and have no GI effects because the gut bacteria can't digest it — my experience would match with that. Other sugar alcohols, though… ???

I'm very pale so even in winter I should be getting reasonable amounts of vitamin D — I noticed no difference health-wise when I was supplementing. In fact supplementing turned out to be a bad idea for me in some ways — I had to stop the B vits suddenly, and my entire face broke out in this bizarre rash that was like a million pearl zits (the ones with the little hard white nugget inside). My facial skin has never been the same since ?

I prefer sucralose or a sucralose-erythritol mix to stevia — for some reason, stevia has a delayed effect for me, so I'll take a sip of tea and it tastes completely unsweetened for a second, before the stevia hits. Weird.

Edit: Oops, sorry, by BM I mean blood sugar! No wonder your post confused me a little.

[OrangesAndMelons]

Um. I just found a table online comparing tTG-IgA tests, and the one on the table that has a reference range of 0–6.9, which was what my test's reference range was, maxes out at 128. So… I've maxed out the tTG-IgA test?!

[cyclinglady]

Every lab is different.  Mine does not even show anything above 100.  But if your range goes to 7 and your result is 128, you can see that you have a strong positive!  

[cyclinglady]

12 hours ago, Alaskaguy said:

Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation. 

However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.

Ha! ha!  Try being soaked and cold while on a bicycle and having to ride for another 40 miles.   The cold water sloshing in my shoes really got to me!  

[cyclinglady]

12 hours ago, Alaskaguy said:

You can say that again!

Part of my disdain for doctors, and the medical (I refuse to say "health care") industry more generally, is due to having suffered (and had repeatedly been misdiagnosed, if not treated by doctors with complete disbelief and contempt) in my later teens and early 20s from a rare condition called aquagenic urticaria, in which my entire body would break out in nasty, ugly, intense hives upon merely GETTING WET!  Yes, that included bathing.  It was the only thing I have ever experienced that makes even dermatitis herpetiformis seem like a walk in the park.  Fortunately, it 'only' struck when my body got wet, and usually for not more than one hour afterward.  But while it was happening, it was torturous in the extreme.

Wow!  I had cold urticaria (hives) when growing up.  Actually my whole life.  Amazing, it resolved after my celiac disease diagnosis.   Luckily, I live in Sunny Southern California.  It made for a hard time skiing, but I did it anyway.  Swimming in the Pacific Ocean triggered it too.  Even an ice cube on my skin caused.  Girls were required to wear dresses to school back back in the day, but I was exempted because of those hives.  

When glutened though I now get chronic autoimmune urticaria that have for about six months.  It is no wonder I am the gluten police?  

[OrangesAndMelons]

Gluten police ?

[deltron80]

I get those same bumps on the sides of my fingers sometimes. Always wondered what they were.

[Alaskaguy]

9 hours ago, OrangesAndMelons said:

I'd have been tempted to strip off and drive home in underwear ?

That excellent thought only came to me AFTER I had arrived home!  But had it occurred to me while en route, oh yes, screw public decency, I WOULD have pulled over and stripped naked, absolutely, no question!

[Alaskaguy]

6 hours ago, cyclinglady said:

Wow!  I had cold urticaria (hives) when growing up.  Actually my whole life.  Amazing, it resolved after my celiac disease diagnosis.   Luckily, I live in Sunny Southern California.  It made for a hard time skiing, but I did it anyway.  Swimming in the Pacific Ocean triggered it too.  Even an ice cube on my skin caused.  Girls were required to wear dresses to school back back in the day, but I was exempted because of those hives.  

When glutened though I now get chronic autoimmune urticaria that have for about six months.  It is no wonder I am the gluten police?  

I've heard of cold-induced urticaria, but thank God I have never experience THAT particular skin misery!  But you should have seen my near-constant summertime poison ivy rashes when I lived in Michgan ....

Yeah, it was odd, the aquagenic urticaria thing started around the time I turned 17, and just slowly went away while I was 22 to 23 years old.  I can still remember having to set aside at least a full hour on those mornings when I showered (which I could NOT do on a daily basis) --- ten minutes for the shower, and a good 50 minutes (sometimes more) to attack the all-over hives and unbelievably unbearable itching.  In the desperate attempt to try scratching it all, all at once, I would even roll back and forth, naked, on a big piece of rough astroturf we had in the basement.  That actually worked much better than trying to scratch it with my fingers.

Squirm, what is "chronic autoimmune urticaria", if I may ask, and how does it differ from dermatitis herpetiformis?

[squirmingitch]

cyclinglady is the one who gets chronic autoimmune urticaria. I sure am glad I don't! Keeping my fingers crossed. I have 3 AI diseases & hope that's the end count.

[cyclinglady]

It is not a rash, but hives and swelling.  Some doctors think it is a separate autoimmune disorder or that it piggybacks on to others.  It is more commonly associated with autoimmune thyroiditis.  

My last bout lasted for six months.  They appeared (from my head to my soles of my feet) every afternoon around 4:00 pm and resolved by morning.  Oddly, they start with abdominal pain.  That is my first clue and next an itchy head.  I was on a cocktail of antihistamines and attempted a low histamine diet.  It may be due to Mast Cell Activation Syndrome.  People can get hives from cold, bug bites, water, heat, etc.  It is just an overactive immune system, I guess.  Kill cyclinglady! 

https://www.mdmag.com/medical-news/four-simple-tests-can-improve-autoimmune-urticaria-diagnosis

What I have personally learned is that by setting off one autoimmune disorder, it can trigger others that you may have.  Like Squirmingitch, I hope to avoid additional AI issues as I have three now and I am blaming the hives on thyroid antibodies to avoid that fourth!  

[Awol cast iron stomach]

On ‎3‎/‎23‎/‎2019 at 7:32 PM, OrangesAndMelons said:

I saw that post earlier! — but when I clicked through I could only read a three line snippet.

 

What's cc?

I can't get a very good picture, and typically, my dyshidrotic eczema is as mild as it gets right now (extremely mild!) but here's my crappy itchy fluid-filled blistery things anyway…

Edited to add: I once had them all over the tops of my feet but was on a camping holiday so assumed it was a weird reaction to my sandals. And this is why dyshidrotic eczema has never felt quite right, because it's supposed to be on palms and soles.

But it doesn't really match DH either.

CC is what we call cross contamination. When we inadvertently eat gluten. Crumbs get in out food if in a shred household. The few times I actually trusted a restaurant that said they were gluten-free and prepared my meal separate-but likely their separate areas were not separate the immune system knows! I don't go out to eat anymore, my whole household is gluten-free, and I eat in my car or work  because I got cc 3 times since I started work. 

I will look for some of the DH rash photos our members have on here. My regular spots to get it is scalp, knees, elbows, upper chest, butt, upper back of arms, even if I don't flare my abdomen always insanely itches. My personal experience I do get hit GI wise and soon after that whole cascade starts, I get the ataxia, and itchy abdomen and often itchy back of elbows. If it is airborne flour (I discovered once at Costco) my ataxia trips first then the shortness of breath etc. So I have found it is slightly different based on my method of exposure. I of course prefer not to experience it at all.

Here is the link for the DH members photo bank.  It is hard to tell for me from your photo. My rash tends to be flesh color initially, but goes red pretty quickly like this first photo. I begin to burn and itchy in the area before my actual blister/bump erupts. As I said since I am one that feels the GI hit it doesn't surprise me when I start burning itching. (Although I get super mad and hope the ataxia and neuropathy won't last longer that a day or two although the rash will linger.

Good luck.

[Alaskaguy]

15 minutes ago, Awol cast iron stomach said:

 My personal experience I do get hit GI wise and soon after that whole cascade starts, I get the ataxia, and itchy abdomen and often itchy back of elbows. If it is airborne flour (I discovered once at Costco) my ataxia trips first then the shortness of breath etc

 

Awol,

You know, I have been noticing in both of my local Costcos over the past year+ that in the aisle and area where they keep the big (25 lb) bags of flour, there is ALWAYS a significant amount of loose flour on the floor, and over the bags, and pretty much on everything else in the area as a fine layer of dust.  What the hell is wrong with Costco, that they can't seem to keep their flour in order?  Your post, and my past observations, make me wonder if I didn't get glutened just by shopping at Costco every time in the past 14 months.

[Ennis-TX]

4 minutes ago, Alaskaguy said:

Awol,

You know, I have been noticing in both of my local Costcos over the past year+ that in the aisle and area where they keep the big (25 lb) bags of flour, there is ALWAYS a significant amount of loose flour on the floor, and over the bags, and pretty much on everything else in the area as a fine layer of dust.  What the hell is wrong with Costco, that they can't seem to keep their flour in order?  Your post, and my past observations, make me wonder if I didn't get glutened just by shopping at Costco every time in the past 14 months.

3

this is a fundamental issue with MOST grain flour manufactures. I mean really...you package a product in a bag that cannot contain said product? 
I mean frack, I can order almond and coconut flour in AIR TIGHT sealed bags. I mean even the 25lb bulk bags...HAVE A PLASTIC bag  INSIDE the giant paper bag to contain your flour. WHY can grain flour manufacture not do this? I order coconut, almond, and hazelnut flours in bulk and NEVER have this kind of issue...but my flours are also very expensive so waste and leakage mean a lot. 

[Alaskaguy]

Good points, Ennis!

And I might point out that this matter of gross amounts of loose flour lying and blowing around in Costco stores does not seem to happen much, if at all, with the bags of flour in grocery stores --- at least I have never noticed it like I have at Costco.

[Awol cast iron stomach]

On ‎3‎/‎23‎/‎2019 at 7:30 PM, OrangesAndMelons said:

Hehe — I've had IBS for so long I stopped mentioning it to doctors because I know there's nothing they can do. In fact I'm so used to it, when the GP asked if I had any GI symptoms after this test result came through, I said no, before remembering about the IBS! 

Once that IBS is there they often just write every GI issue off to that. Funny story I was diagnosed as IBS symptoms only in my early 20's he told me to figure out what I can and can't eat . The immunology Dr I saw from 2016-2018 helped fill in the blanks and connect the dots for the various confusion of why some non breaded chicken breast bothered me =, but never any made by my mom or myself (people who use meat tenderizer-gluten) A-Ha thanks Dr. The coffee that was supposedly my tremors were just due to caffeine. Nope Dr said to my husband get her whole pure unflavored coffee beans ground in a new grinder and brand new coffee pot she told my husband to get. Thanks again Dr no ataxia, neuropathy, or involuntary tremors after that cup. I can't remember what others gems she figured out for me. While I very much hated 2016-2018 in my Celiac adventure and healing she taught me I really did have a medical gluten issue (which my husband and I suspected) , but through that Dr. and the forum here I realized just how much exposure I was getting and from where.

I will never quite understand why my diagnosis took so long there were many missed opportunities and quite frankly between IBS and I hypothesize (someone writing in my medical that they thought I had mental issues) I was always dismissed. In my early 20's I went the alternative route to manage what I was scared was autoimmune, but wasn't sure when it would reveal itself. In 2008 I ran to several Dr's primary, immunologist/allergist, dermatology as I was having constant lightheadedness/dizziness that would not go away along with skin eruptions/rashes and joint pain galore. They missed my skin issues in 2004 and told me to stop being a baby about my (Puppp rash) diagnosed by visual only by OB. 

I now have all the pieces, the dots connected with the help of the 2016 immunologist, and of course the repeating cascade of celiac/DH symptoms. 

That insane dizziness /lightheadedness yeah well that's ataxia. all those past diagnosis I'm told stay in my file despite the real culprit being discovered later. Sigh. 

For the multitude of multiple symptoms and issues I have I often still am trying to accept that with the medical fields current practices of the 10-15 minutes appointments they spend with you, why I was diagnosed with the multitude of very, very wrong illness/symptoms when the real culprit took a way to long to be discovered. My 2016 immunologist one time had me in her office 2-3 hours. She came in and out and her staff during that time, but that was probably my longest most through appointment ever except if you count labor and delivery of my kids. 

Being sick, my brain, nervous system, body and all my organs being a  patient.mess from Gluten entering my life and my challenge I know I was less than a patient-patient. So with that I hope with this story I reveal my gratefulness to that immunologist. She took the time no one did. I was too sick and witchy for over 2 years to properly thank you. So whatever you are doing today at this moment Dr. -thanks! Beyond words.

May you find that Dr. who takes the time for you. I was misdiagnosed along time until mine actually looked beyond the earlier diagnosis notes to pull it all together.