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

[OrangesAndMelons]

  On 3/25/2019 at 7:35 PM, Awol cast iron stomach said:

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.

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Thanks for the link! I'm currently in the same headspace as my partner was when he had optic neuritis and started worrying that everything he had was a sign of MS…

With my sensible head on, I really don't think that what I have is DH but it doesn't really match dyshidrotic eczema properly either ? Probably just some weird random histamine thing — I'm one of those atopic people with a million allergies and things but all very mild (hayfever, asthma, eczema, pollen food syndrome/oral allergy syndrome, dramatic reaction to mozzie bites, heat rash, etc. etc.).

Right, yes, cross-contamination; I should've guessed that. Thanks ? I've a couple of friends with allergies who have to worry about that.

[OrangesAndMelons]

  On 3/25/2019 at 8:08 PM, Awol cast iron stomach said:

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. 

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Wow, what a bloody saga! I'm sorry it took so long and so much pressure from you to get the medical help you needed. Thank you for telling me your story.

I actually *do* have mental issues, which might not help matters ?

[OrangesAndMelons]

I checked my blood test results and it does actually say >128, so it must be out of the range of measurement. Which a couple of people have suggested to me might mean it's more likely to be an erroneous result…

[cyclinglady]

  On 3/25/2019 at 10:40 PM, OrangesAndMelons said:

I checked my blood test results and it does actually say >128, so it must be out of the range of measurement. Which a couple of people have suggested to me might mean it's more likely to be an erroneous result…

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Nope.  I do not think it was a lab error.  The only way to know for sure is to get retested.  I get the denial.......

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3436057/

I have never even had a positive on the TTG or EMA (repeated at least five times).   However, my DGP IgA has been elevated.  How much?  I do not know as my lab cut off is 100.  I am biopsy confirmed.  

[OrangesAndMelons]

Labs do make mistakes sometimes, and often mistakes cause extreme results rather than slightly wrong results… I'm keeping that possibility in mind until I get the repeat test done ? It would be the only good outcome, really, because otherwise it's probably either coeliac disease, which probably means an even more annoying diet than I have already, or it's something worse.

Went in Starbucks yesterday and looked to see what they had, because I'd heard someone say they were okay for gluten-free stuff. If it turns out I'm coeliac, there are literally two things in the whole place I can eat: crisps, and gluten-free porridge. And even that's only if I'm okay with oats. Anything sugary is out, because of the diabetes, so no gluten-free cakes, biscuits, etc., and the only gluten-free sandwiches they had were ones with cheese in them, which is contraindicated when you take an MAOI ?

Most gluten-free breads and things turn out to be quite high in sugar, too. And one of the few sweet treats I have is sugar-free biscuits, which of course are full of gluten. And gluten-free biscuits are full of sugar.

Bloody glad I'm not lactose intolerant, or allergic to anything, or a vegan ? So many coeliacs seem to have a whole laundry list of things they can't eat ?

My partner has been experimenting, though, and has produced a lemon cake made with erythritol and gluten-free flour which was delicious, so at least we know that if I'm diagnosed with coeliac disease, he can make things like that (though he'd be careful about minor ingredients and contamination, which he didn't bother about this time as it was a proof-of-concept thing). 

[Ennis-TX]

  On 3/26/2019 at 12:05 AM, OrangesAndMelons said:

Labs do make mistakes sometimes, and often mistakes cause extreme results rather than slightly wrong results… I'm keeping that possibility in mind until I get the repeat test done ? It would be the only good outcome, really, because otherwise it's probably either coeliac disease, which probably means an even more annoying diet than I have already, or it's something worse.

Went in Starbucks yesterday and looked to see what they had, because I'd heard someone say they were okay for gluten-free stuff. If it turns out I'm coeliac, there are literally two things in the whole place I can eat: crisps, and gluten-free porridge. And even that's only if I'm okay with oats. Anything sugary is out, because of the diabetes, so no gluten-free cakes, biscuits, etc., and the only gluten-free sandwiches they had were ones with cheese in them, which is contraindicated when you take an MAOI ?

Most gluten-free breads and things turn out to be quite high in sugar, too. And one of the few sweet treats I have is sugar-free biscuits, which of course are full of gluten. And gluten-free biscuits are full of sugar.

Bloody glad I'm not lactose intolerant, or allergic to anything, or a vegan ? So many coeliacs seem to have a whole laundry list of things they can't eat ?

My partner has been experimenting, though, and has produced a lemon cake made with erythritol and gluten-free flour which was delicious, so at least we know that if I'm diagnosed with coeliac disease, he can make things like that (though he'd be careful about minor ingredients and contamination, which he didn't bother about this time as it was a proof-of-concept thing). 

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I do gluten-free baking with nut flours and use erythritol. This keeps it diabetic friendly and low carb. I have some recipes on my blog if you want to play around with them. >.>  eat my own cookies and bread daily. 

[OrangesAndMelons]

  On 3/26/2019 at 12:10 AM, Ennis_TX said:

I do gluten-free baking with nut flours and use erythritol. This keeps it diabetic friendly and low carb. I have some recipes on my blog if you want to play around with them. >.>  eat my own cookies and bread daily. 

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Ooh, recipes! Cool ?

[OrangesAndMelons]

  On 3/26/2019 at 12:10 AM, Ennis_TX said:

I do gluten-free baking with nut flours and use erythritol. This keeps it diabetic friendly and low carb. I have some recipes on my blog if you want to play around with them. >.>  eat my own cookies and bread daily. 

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I looked on your profile and the FB page you linked there and couldn't find a blog link…

[Ennis-TX]

  On 3/26/2019 at 5:27 AM, OrangesAndMelons said:

I looked on your profile and the FB page you linked there and couldn't find a blog link…

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https://www.celiac.com/blogs/blog/1202-gluten-free-and-specialty-diet-recipes/

[OrangesAndMelons]

  On 3/26/2019 at 9:05 AM, Ennis_TX said:

https://www.celiac.com/blogs/blog/1202-gluten-free-and-specialty-diet-recipes/

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Thank you

[OrangesAndMelons]

Ugh. It seems that when there's a positive result on the tTG-IgA, they just automatically go on to do an EMA test (which I just read online uses monkey oesophagus?!), but it takes longer to come back because it's not automated. It's just appeared on my GP app and apparently it's abnormal. So unless they've used somebody else's blood by mistake, that's not leaving me much wiggle room for optimism ?

[OrangesAndMelons]

Just got my appointment for the gastroenterology clinic. Argh. It's like this is a real thing or something!

[Ennis-TX]

  On 3/27/2019 at 10:23 PM, OrangesAndMelons said:

Just got my appointment for the gastroenterology clinic. Argh. It's like this is a real thing or something!

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Yep, denial is standard. We all feel this way, we grow up eating wheat daily, consider it normal human food, and then learn our bodies think it is an invader and then we can not believe it. It is quite alienating I know, but here is a more realistic and better perspective. Wheat is only been introduced to the human diet in the last couple thousand years, it can takes 10s of thousands for evolutionary traits to environments to develop. To be blunt, humans are not genetically evolved to live on wheat as a staple....heck we are not supposed to eat carbs all the time either. Take a step back to our ancestors, we were nomads, we ate fruit, and carbs when in the season, not year around, we did not grow crops, heck why would we have stopped and picked tiny seeds off a stalk of grass and eat them? It was a waste of energy when roots, fruit, nuts, larger seeds, and meat from other animals were a more efficient source of calories. That is my reasoning to the paleo diet, I messed up and can not enjoy fruit, roots, or sugars any more at all. 
If you keep eating gluten after they confirm your testing you will probably get more issues with other foods like dairy, soy, nightshades, corn, etc. As your damaged guts are more prone to letting other proteins get where they are not supposed to (leaky gut) you increase your chances of an immune response to said food proteins which can become permanent. 

BUT FOR NOW, til the testing is done....run a food bucket list of what you can I mean you have to eat gluten til the scope so make the most of it..I wish I had, but I was practically bedridden half the week, and going mentally insane with ataxia and mental issues. I just got off it and went paranoid scared of the stuff, tired of being sick.....On the bright side, I made a business out of it, started gluten-free baking, selling at local markets, and am trying to start a paleo food truck lol. 

Sorry about the oddness of this post, I have to try to rationalize everything. >.<

[OrangesAndMelons]

It's not denial until I know it's true… ???

Yes, trying to think of all my favourite gluteny foods… I've got six weeks of freedom left.

[OrangesAndMelons]

Thing is, though, if I end up with a coeliac diagnosis, I have no idea how I'm going to manage to avoid cross-contamination… I'm in university accommodation with a shared kitchen ?

[Ennis-TX]

Nordicware Microwave Cookware,  microwave, mini fridge, and a Rubbermaid tub to do dishes in.   What I used in a shared house and take with me on trips when I travel. They make omelet makers, steamers, bacon cookers, grill plates with splatter covers, rice cookers, etc
I also use the omelet makers in at home when the stove/oven are being used, it is quick and easy.

[OrangesAndMelons]

There's no room for a second microwave/fridge/freezer… the other stuff, I guess I'd have to keep in my room if I couldn't trust people. And I wouldn't be able to use the oven?

[GFinDC]

  On 3/28/2019 at 10:13 AM, OrangesAndMelons said:

There's no room for a second microwave/fridge/freezer… the other stuff, I guess I'd have to keep in my room if I couldn't trust people. And I wouldn't be able to use the oven?

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Hi,

I live in a shared house with gluten eaters.  You can use the oven and the microwave.  At least I do and it seems fine.  I keep some separate silverware for me, a dorm size refrig for some of my food, and I rinse plates and such before using them.  I have separate pots and pans to use.  If I put food in the shared refrig, I put my gluten-free food on the top shelf to prevent possible crumbs falling on it.  I also wash my hands a lot.  I wipe down counter tops some too 

[OrangesAndMelons]

  On 3/28/2019 at 12:03 PM, GFinDC said:

Hi,

I live in a shared house with gluten eaters.  You can use the oven and the microwave.  At least I do and it seems fine.  I keep some separaate silverware for me, A dorm size refrig for some of my food, and I rinse plates and such before using them.  I have separate pots and pans to use.  If I put food in the shared refrig, I put my gluten-free food on the top shelf to prevent possible crumbs falling on it.  I also wash my hands a lot.  I wipe down countertops some too 

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Thanks!

I guess maybe I could ask my corridor to only put glutenless stuff on the top shelf…? I can't guarantee someone wouldn't "borrow" my butter or whatever and leave gluteny crumbs in it ?

God, I really hope the biopsy comes back negative.

[Ennis-TX]

  On 3/28/2019 at 12:08 PM, OrangesAndMelons said:

Thanks!

I guess maybe I could ask my corridor to only put glutenless stuff on the top shelf…? I can't guarantee someone wouldn't "borrow" my butter or whatever and leave gluteny crumbs in it ?

God, I really hope the biopsy comes back negative.

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Unsure about where you are, but in the US colleges, businesses, etc. Have to accommodate disabilities and conditions legally. With a medical Diagnosis on file, talk to the coordinator for housing. Might get you your own room, or find someone else with celiac to room with.

Shared microwaves, great thing about that nordiware...the splatter covers cover your food while it cooks on the grill plates or plates, the steamers and omlette makers close up. They are lightweight, cheap, and easy to clean.
Oven, put down foil on the rack, bring your own dishes...and you can foil line them for easy cleanup and extra precautions. Great for a casserole you can eat on for days. 
Can you get a instapot? Heck crockpot liners in them and make a nice stew/soup.
You can put red tape on everything that is yours to "Mark them" as gluten free, even the condiments. Dairy intolerance is very common with celiac, the longer you take damage the worse it gets as the villi produce the enzymes to break it down (just a note on the butter)  I personally just use butter flavored coconut oil nowadays. 

[OrangesAndMelons]

  On 3/28/2019 at 12:38 PM, Ennis_TX said:

Unsure about where you are, but in the US colleges, businesses, etc. Have to accommodate disabilities and conditions legally. With a medical Diagnosis on file, talk to the coordinator for housing. Might get you your own room, or find someone else with celiac to room with.

Shared microwaves, great thing about that nordiware...the splatter covers cover your food while it cooks on the grill plates or plates, the steamers and omlette makers close up. They are lightweight, cheap, and easy to clean.
Oven, put down foil on the rack, bring your own dishes...and you can foil line them for easy cleanup and extra precautions. Great for a casserole you can eat on for days. 
Can you get a instapot? Heck crockpot liners in them and make a nice stew/soup.
You can put red tape on everything that is yours to "Mark them" as gluten free, even the condiments. Dairy intolerance is very common with celiac, the longer you take damage the worse it gets as the villi produce the enzymes to break it down (just a note on the butter)  I personally just use butter flavored coconut oil nowadays. 

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I'm in the UK — not sure whether coeliac disease is covered by the Equality Act but I'm sure my college will be willing to do whatever's needed. I already have first dibs on room choice because of my ASD, and because of that have elected to stay in the same room next year as familiarity reduces my anxiety.

Almost no students in the UK share rooms ? It always seems bizarre to me in American films/TV that university students have to share a bedroom, when you're such a rich country! I was like, "Tony Soprano's daughter has a shared room?!" But there are five of us on my corridor sharing the same kitchen, which isn't great.

Good tips on the oven; thank you!

[squirmingitch]

Parchment paper will be one of your new best friends too. Between parchment paper & tin foil, there's not much you can't do. There are even toaster bags you can use for shared toasters.

https://www.amazon.co.uk/PACK-20-Disposable-Toasting-Dimensions/dp/B00SI1V1LK

https://aroma-cleaning.store.buegle.com/product.php/3097153/

[Ennis-TX]

  On 3/29/2019 at 1:34 AM, squirmingitch said:

Parchment paper will be one of your new best friends too. Between parchment paper & tin foil, there's not much you can't do. There are even toaster bags you can use for shared toasters.

https://www.amazon.co.uk/PACK-20-Disposable-Toasting-Dimensions/dp/B00SI1V1LK

https://aroma-cleaning.store.buegle.com/product.php/3097153/

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OH and do not forget butcher paper. Putting it down on counters make sure there is no residue or crumbs to contaminate your food, BEST PART is cleaning up is SO easy after since you can just toss it.

[OrangesAndMelons]

I love the idea of using disposable surface covers, thanks

 

Repeat blood test in a few hours — I have my fingers crossed that it comes out negative and I can cancel the endoscopy!

[OrangesAndMelons]

Repeat blood test came back with the same result