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. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    2. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
    3. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748
    Tdodge
    Newest Member
    Tdodge
    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

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.