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Introducing Myself While I Wait For Test Results

KC in KC

By KC in KC
in Introduce Yourself / Share Stuff

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KC in KC Newbie
KC in KC
Posted

Hi everyone! :D

I'm SO glad I found this forum! I'm a chronic user of such things -- the support and the knowledge-sharing is so valuable! -- so when I realized we were starting down Celiac Road, I knew I needed to find some people to walk with. I've been lurking for a couple of days now already ;)

We're approaching a celiac diagnosis a little bit backwards -- in chasing down some GI issues, my doc did the biopsy already. It came back with "moderate inflammation", so he's ordered the celiac panel. I'm just waiting not-so-patiently for the results now. I know the biopsy results *could* be from other causes, but based on symptoms from myself and my daughter, celiac sure sounds like a strong likelihood. Kinda feels like waiting for the other shoe to drop now.

We have a couple of friends with confirmed celiac, so I have absorbed a certain amount of knowledge from them already, plus I know I've got some automatic local support, if necessary. But I'm a research junkie, so I'm dealing with the waiting-suspense by researching. :P

Just at the moment my biggest concern is simply logistics. I don't do much cooking at home right now, thanks to time pressures, but I know our budget won't stretch to cover much in the way of gluten-free-convenience foods. I'm going to have to figure out a new set of priorities, I think. :(

Anyway, Hi! :lol:

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mushroom Proficient
mushroom
Posted

Hi :) and welcome to the board. I hope we can provide you with whatever support you need.

Yes, if there is one thing gluten intolerant people discover, it is that they have to do more cooking than they have been used to in the past. I once joked to a friend that if I want to make a pie with a cookie crust, first I have to bake the cookies :lol:

You will find that a crockpot is an indispensable kitchen item, and you will probably end up cooking in bigger batches than you are used to so that you have leftovers, both for lunches and for nights when that's all you're up to.

But don't let it overwhelm you. Millions of us, cooks and non-cooks alike, manage to cope with it very successfully.

Let us know how your blood tests turn out.

GFinDC Veteran
GFinDC
Posted

Welcome to the forum KC! :)

There is lots to learn here about celiac disease and gluten intolerance. And eating gluten-free for that matter. Your budget should be fine if you stay away from processed foods and concentrate on whole foods and cooking them yourself. Cooking is going to be important for you so you can know what is in your food rather than guessing what someone else may have put in it that could make you sick. But it doesn't have to be gourmet cooking to taste good and be nutritious too. Simple meals are good for starting out as your gut needs time to heal and it is easier with simple foods. Anyway, welcome again and feel free to ask questions.

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

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      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
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      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
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      results from 13 day gluten challenge - does this mean I can't have celiac?

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      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
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