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Not Yet Diagnosed - Gluten Diet
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Noob here not even sure if im posting in the right area.. am i considered young adult? 25 yrs old? lol i feel older than that, been feeling really sick, tired all the time, pains in sides and grumpy/ depressed. I was actually orginally reading an old post i found from google back in 2006 that made me want to come here. I saw the doctor today and he thinks i have Celiac Disease. I`m not on a Gluten Diet so my test will come back accurate. Day one and i feel like "poopy". All i wanna do is curl up in my bed and sleep. I`m afaird to eat anything. All i know is that bread has gluten.. so i googled some gluten foods, and now im on day one gluten pre test diet. doc says i have to eat it for 2 weeks. will it be accurate enough within only two weeks? Im looking forward to feeling better. I realise im lucky and it could be MUCH worse. Just which i couldve been diagnosed ages ago. Orginally i thought my pains were from my cysts on my kidneys but specialist said no, and to get checked out. first test was lactose, was 1.00 away from being lactose - so im not lactose but dairy still upsets my tummy. so if i am celiac, - is it hard to find dairy and gluten free products? p.s sorry for my spelling mistakes and grammer xD

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Welcome to the boards, Icis.

It's a shame about the not eating gluten / want to be tested. :( And sorry you are feeling bad back on gluten.

Many doctors will tell you that two weeks is sufficient for a challenge. There are some here who would support that timeframe, but most believe a longer period is required for an accurate result. If you shop around you will get dozens of different time estimates and estimates of amount of gluten to consume. The current consensus seems (just my perspective, I have done no statistics) to range in the 4-8 weeks range - yeah, pretty broad - and one or two slices of bread or equivalent per day. Some even prescribe down to the last microgram of gluten per kilo of body weight :wacko: So I am afraid you are either going to have to trust your doctor or make up your own mind about how long the challenge needs to be, or maybe your body will decide for you if you react strongly enough.

And when you get your testing done, there is still a chance you will test negative - as having non-celiac gluten intolerance rather than celiac disease. Same symptoms, same prescription (zero gluten), but supposedly you do not sustain the damage to your body that celiacs do. I say supposedly, because NCGI has only recently been recognized by doctors and research is just getting underway as to what this actually consists of and what it does.

If you are celiac it means that you will most likely have intestinal damage which will make it difficult to digest lactose and you will need to avoid that as well for a few months until it heals. There are many foods and recipes that are gluten free / casein free, labelled as G F C F (casein is the protein in milk).

Best wishes in your challenge and testing. :)

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Hi Icis,

I am a 26 year old male who has recently started a gluten free diet after putting up with years of awful symptoms similar to yours.

Once you start your gluten free diet, you must be vigilant in checking all sauces and snacks for gluten. Depending on where you live there will be many options for gluten free condiments, such as soy sauce, but it's better to check the ingredients before you consume anything. It is probably best to avoid eating out in the earlier phases of the diet, just to lessen the chances of cross contamination. You may want to avoid dairy in the meanwhile, but if you do suffer from celiacs/GI, you will most likely be able to tolerate them after a few months.

However, I still believe you can still have delicious and exciting food on a gluten free diet; just get use to preparing a cooking meals for you self. Meat, vegetables, fruits, and nuts and going to form the basis of your new diet and fresh herbs and spices will add flare and flavor to your cooking.

I suggest researching gluten free cooking a bit on the internet, as there is a plethora of websites offering recipes and lifestyle tips out there.

Don't worry about it too much. This is not the end of the world, but rather, the start of your new and healthy life.

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Okay thanks guys ^^ I dont think 1-2 weeks is long enough for the test either. i`ll do four weeks. Found out a few hours ago it costs money to get the test done too, rather disappointing =( But I`ve found a Lab that doesnt it for a fair price.

Is only 2 slices of bread a day enough for 4 weeks on diet? Can I make a sandwich or french toast instead of just eating plain bread, or will that affect my results? I also read somewhere that a Endoscopy is required if results turn up positive, I hope not because I dont like the idea of being put to sleep T_T

Oh and another question I wanted to ask was how long does the bloodwork take? I had a lactose test done a few weeks back that took four hours.. I`m hoping its just one vile they need and not five lol It was a nightmare

Thanks for having patience with me =) And Thanks for answering my questions <3

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Whether two slices a day for four weeks is enough is debatable. But you don't have to eat them plain--just eat them. French toast or sandwiches are fine. And it does not specifically have to be bread. Rolls, bagels, pizza crusts all work, as does ordinary wheat pasta.

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Bread is merely used as the most common expression of gluten. You can take this opportunity to 'pig out' on all those things you will no longer be able to have, all the good pizzas, phyllo dough pastries, sourdough french, -- see, now here I am sitting here saying, what is it I really miss??? :lol: After a while you forget because you don't miss them that much!! Anyway, you get the idea - whatever gluten-full goodies float your boat. Don't waste it on a piece of plain bread you are not going to enjoy very much! I will eat vicariously with you. :D

ETA: I applaud your decision to choose a longer challenge - the longer it is the greater the chances of accuracy.

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Hi LCIS,

The grains we react to as celiacs are wheat, rye, and barley and some of us react to oats also. So you can eat any of those to up your gluten intake for the gluten challenge. If you turn out to be celiac or NCGI, you will probably want to eat alternative flour products later, like quinoa, amaranth, potato starch, millet, almond, bean, rice flours etc. There are quite a few alternative, gluten-free flours available now.

If you like to cook and like whole foods going gluten-free is easier. If not you can learn to like to cook and eat whole foods though! :) Whole foods are things like plain meats, whole vegetables, nuts, fruits, etc. Foods in their natural state and not processed and boxed with a picture on the box to tell you what you are buying. Those boxed foods are processed foods. Once you get a taste for whole foods you will probably like it better than your old processed foods anyway.

There is a recipe section on this forum with lots of ideas for gluten-free eating.

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Yeah I`m not much of a cooker, but I guess now would be a great time to try stuff out and get a little creative. I`ll have to look into the recipes on this site ^^

I laughed at your message Mushroom when you told me to eat everything while I can and you`ll eat vicariously with me xD I`m going to have some pizza or something tomorrow, sounds really good to me.

Thanks again everyone ^- ^

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missed your original post...

Welcome...have a glazed old fashioned donut for me if the mood strikes ;)

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GAH! Took me forever to find this site again.. I would type celiac.com and would bring me to a different site without a log in option.. But FINALLY I found my way back lol The lab ladies told me since I`ve never been gluten free - ever, that I can take the test in my two week mark. I`m almost to my 3 week mark so got the test done today. Looking forward to results. I`ll post them when I get them and If I can find this site again xD and LOL Gottaski, That`s my favourite donut ^^ luckily theres a tim hortons near by, and I`ll eat one for the both of us ^^

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GAH! Took me forever to find this site again.. I would type celiac.com and would bring me to a different site without a log in option.. But FINALLY I found my way back lol The lab ladies told me since I`ve never been gluten free - ever, that I can take the test in my two week mark. I`m almost to my 3 week mark so got the test done today. Looking forward to results. I`ll post them when I get them and If I can find this site again xD and LOL Gottaski, That`s my favourite donut ^^ luckily theres a tim hortons near by, and I`ll eat one for the both of us ^^

Bookmarks, Icis, bookmarks!!! :D

Yes, please do tell us the results (with the reference ranges).

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Lol i know i know XD I will. Should get the results by monday at the latest

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
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