Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Not Yet Diagnosed - Gluten Diet

Icis

Recommended Posts

Icis Newbie
Icis
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

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. :)

sabin112 Rookie
sabin112
Posted

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.

Icis Newbie
Icis
Posted
  • Author

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

psawyer Proficient
psawyer
Posted

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.

mushroom Proficient
mushroom
Posted

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.

GFinDC Veteran
GFinDC
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Icis Newbie
Icis
Posted
  • Author

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 ^- ^

GottaSki Mentor
GottaSki
Posted

missed your original post...

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

  • 2 weeks later...
Icis Newbie
Icis
Posted
  • Author

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 ^^

mushroom Proficient
mushroom
Posted

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).

Icis Newbie
Icis
Posted
  • Author

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.