2/3 confirmed?

[Northern-Botanist]

Hi everyone!

I'm 24 y.o and I've been undergoing a Celiac diagnosis since May 2019. I had absolutely no clue as to what this disease even was before getting the first result and it's been a wild and hard ride so far. My general doctor first clued me into the possibility of having Celiac due to blood tests that showed real high transglutaminase levels (tTG-IgA test). I was transferred to a Gastro who made me take a ''gluten test'' where I ate lots of bread and other sources of gluten for about 3 weeks before undergoing an endoscopy. I also had further blood tests to re-check my transglutaminase levels and test for the presence of the celiac alleles in my genes. The results just came in and turns out my transglutaminase levels are still sky high and I do have the presence of alleles for Celiac in my genes. However, the gastro is hesitant to give me a full diagnostic because my endoscopy showed little damage of my intestines. Should I ask for another endoscopy? I fully trust my gastro i'm just confused as to how I can check 2/3 of the symptoms and still get a tentative no? The gastro wants to see me again in 6 months to see if I've stabilized and has told me to absolutely avoid gluten from now on though, so I guess my lifestyle from now on still shifts to that of someone with celiac/gluten sensitivity. 

For what it's worth, I was completely miserable physically, mentally, and emotionally during my gluten test and my digestion has been horrible since February 2019. I first went to get a blood tests cause i was concerned about having hterrible digestion from February till May this year. 

Thanks in advance!

Joshua

[NNowak]

The methods of your gastro are unfamiliar to any I’ve heard. Typically a “gluten challenge” is 2 months in duration, consists of the equivalent of 2 slices of gluten bread daily and is for the purposes of the bloodwork. Intestinal damage varies by person. If you had been gluten-free for several months your GI could vary well be healed, or show little damage - especially if the disease recently developed. You didn’t state if there was a biopsy done. If so, you should get a copy of the results. 
 

Given your bloodwork, symptoms and “little damage” to your GI, you have all the markers of Celiac. It’s not always a cut and dry diagnosis as we are all different. Your gastro should be able to navigate that diagnostic process and give you a clear answer. Perhaps a second opinion is in order. 

[Ennis-TX]

A gluten challenge is normally 12 weeks of 1-2 slices a bread a day for the blood test. Do note there are other blood test that can be more reliable.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
They normally do 2 weeks to check for damage directly to the intestines with a gluten challenge but the intestines splayed out are the size of a tennis court and they are looking at 6 tiny biopsies via a microscope when celiac damage can be spotty. If he found any damage I would consider that a positive. I do question your GI a bit though.....if he checks later after a gluten free diet for 6 months the majority if not all of the damage might have healed. I guess if it looks better then then you have celiac and hit healed a bit?
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/
It honestly sounds like celiac to me, so welcome to the club.
The Newbie 101 section has some nice general info, but you will want to look into the cross contamination a bit to see what all you have to do to be safe. IE throw out condiment jars, scratched pans/pots, cutting boards, tubberware, and colanders. And go through everything cleaning out cabinets, fridge, drawers (crumbs and unsafe products).
We normally suggest a whole foods only diet starting off to make it easier, and to avoid dairy and oats for a few months(the villi in your intestines are destroyed by celiac and they produce the enzymes to break it down, while 10% of celiacs also react to oats) Also avoid eating out til you get a hang of things and know that it is russian roulette unless they are a dedicated gluten free restaurant.

[Northern-Botanist]

Thank you both for your replies! 

and thanks @Ennis_TX for welcoming me . Here's a few specifications: The gastro and my general doctor both think that if it is Celiac, then it's most probably a recent thing (probably starting in September 2018). My endoscopy was also a biopsy at the same time sorry for not mentioning it from the start! The biopsy revealed again ''little damage'' (not sure what that means and I'll definitely ask to see the results thanks for the advice!) However, I also had diagnosed esophagitis at the time of my endoscopy due to all the acid reflux/heartburn I got from eating gluten (which was basically every day for 3 weeks straight. sleeping was a nightmare). I guess the doctor wants to wait to see if it's something else that might pop up or be noticed one i'm weaned off gluten? 

And thank you too for recommending me the Newbie 101 section i'll definitely check it out! I know I can't handle oats at all since i'm also super lactose intolerant and tried oat milk one day as a recommendation from a friend and got the worst heartburn i've had in awhile... 

I have one more question, I'm pretty new to forums online so i'm wondering, from now on if i have more questions should i simply reply to this current topic or should i create new topics (ex: how to talk about this with my roommate who eats bread for breakfast, lunch, and dinner?)

Thank you both so much again! I think I can start accepting the fact i'm most likely Celiac now. 

[NNowak]

If you have a new topic, start a new thread so it can be filed or searched accordingly. As far as the roommate and cookware........it takes a certain amount of gluten to illicit the autoimmune response (20 ppm - 2 slices of gluten free bread).  I’m extremely sensitive (diagnosed 24 years ago) and can use the same toaster as my gluten addicted children, cookware, Tupperware, etc. as long as you’re not licking the crumbs off your roommates plate after every meal everyday, you’ll be fine. I have had an autoimmune response from gluten baking in the oven, which I thought was ridiculous, but it has happened several times - so be aware of that. 
 

Organic coconut milk is good, as is coconut milk ice cream and cashew milk ice cream. You can probably have a few bites of dairy ice cream once you’re all healed up - it took years for me. Don’t stress, research, listen to your body and feel better!

[Northern-Botanist]

ok that's a relief for my roommate! And i'll make sure to look through topics for future posts!

Thank you so much for the dairy recommendation! I'm already looking forward to the day I can eat dairy ice cream again  .Thanks for the get better wish too! I'm relieved I can finally start healing from all of this.

 

[Ennis-TX]

Umm that is a bit off, below 20 parts per million or less then 10mg a day is said to be safe, but many can react to below that and even tiny amounts of flour dust. It varies from each person. Your body/immune system now thinks gluten is a foreign invader like a germ....it reacts to germs. Think on that, the issue is how much is picked up on in your intestines, we see people react to inhaled flour getting stuck in their mucus then draining into the stomach and triggering a reaction.
https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/

Pro tips, get your own area, reserve the top of the fridge or get a mini fridge for your food, get a dedicated pan and cookware for your food and MARK them with like red tape on the handles. A top shelf for your stuff in a cabinet is useful. Lay out butcher paper to prep you food on to help with staying free of crumbs and makes clean up super easy. Heck look a like Nordicware microwave cookware and just use the stuff and splatter covers, or even make your own cooking space in your room with a microwave, induction cook top, and or a multi cooker. Oh and NEVER let your room mate use loose flour unless you plan to be gone for 24 hours, stuff can stay airborne that long and it settles on everything with a nice gluten dust.

Dairy...my issues just got worse then I got a whey allergy lol. So I can tell you every kind of dairy free cheese, milk, yogurt, pizza, butter etc. I been paleo for years and have a entire separate cooler full of cheeses .
Milks I loved Almond Breeze and Silks Cashew milks for the creamyness or the almond milks, There were some coconut milks also for when I wanted that. Good Karma made one out of flax milk, I once found a nice walnut milk that was great, and Ripple Even made a pea protein on....that was really creamy but acquired in taste lol My recent issues with binders have me on this expensive one called MALK that is GODLY almond milk
Cheese, I tried many, I found I got bloated from Daiya but loved the melted texture, few others were the same. I now use Miyoko's a lot and buy their Mozzarella blocks, Cream Cheese, and Road House Spreads, Kite Hill makes the best Ricotta for lasagna, they also make some dips and cream cheese but I react to the Xanthem gum in them lol another intolerance. Now for a goat like cheese Spero foods makes some you can order online even. I found these lovely spreads by leaf cusine....the smoked gouda and pepper jack were a god send. I know some places you can order a TON of artisan ones from also down the road if you do not have a whole foods to find these at.
Yogurt, There is Kite HIll, Silk, So Delicous. and a few others. I like the flavors of many but found the Kite Hill Greek to be the best on my stomach.
Icecream....tons of dairy free options now days, me having glucose issues only tried a few no sugar added Sodelicous ones and this one called Wink...which was like a frozen dessert bar in a pint.
For plant based Pizza I went with Califlour Foods Plant Crust, bit odd but find how to cook them for your and they work just melt your miyoko's or other vegan mozz, sauce and toppings. Heck Mikey's Makes a dryer crust and some good pizza pockets. And if Daiya cheese is alright with you they make their own dairy free frozen Pizzas too.

I have a list I update a few times a year with various gluten-free alternatives on it.

Edited November 22, 2019 by Ennis_TX

[Northern-Botanist]

Woah thank you so much for all this info :0 I'll start getting a feel of my own tolerance level and hopefully get to a good and easy agreement with my roommate! He's thankfully not an enthusiastic cook and I tend to cook our main meals. he just likes to (very often) snack on bread on the side. As for all the alternative products, i'll look into them! thank you for listing so many! I live in a remote area in Canada so I don't have access to big supermarkets but online stuff should ship and i can get crafty with fresh produce so it should be a (hopefully) smooth adaptation!

Thank you so much! It's heartwarming to have joined such a friendly and helping community!