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Can't Fall Asleep!


amber-rose

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amber-rose Contributor

Hi! I'm 14 (15 on Nov. 5th!!) & I've been gluten-free for about 6 months now. I had trouble on getting all the gluten eliminated, up to about a month go. And now I have absolutely no problems now that the glutens is all out of my diet!! :D.

But I do have trouble getting to sleep...and its really frustrating. I'm homeschooled, so I can sleep in later, which is good when I have those nights when I only sleep 2 hrs.

I don't even start to get tired until about 12:30 am.! I try to read a book from 11:45-12:??. but once i close my eyes to go to sleep,,BAM, i'm wide awake again! its so frustrating. My mom had me take benadryl a couple nights in a row, just because I was like a zombie for 2 weeks, only getting about 3-4 hrs a night. But usually once I'm asleep, I'm definiteley asleep. For about the last two nights I fell asleep at about 1 am (which is REALLY good for me), & I slept for about 11 hrs! I did grow an inch in about a week! lol, & I know that can make you tired. But the problem for me is, trying to get to sleep!!

Anyone have the same problem or have any ideas for this? I dont want to get addicted to Benadryl if I take it every night. Like last night, I didnt take it & i just layed in bed til about 2 am, then I got tired of not being tired, so i took one. :unsure:


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sspitzer5 Apprentice

You might want to give melatonin a try. You can pick it up in any health food store. I'm trying time relased now as it helps me stay asleep.

S

Saz Explorer

You sound so much like me, it takes me like 1-2 hrs to fall asleep. I have been this way all my of my life. Like you said I can be really tired and as soon as lay down and try to sleep I start thinking about anything and everything or feel wide awake. However once I do finally get to sleep I usually stay that way. The only time I would fall asleep within half an hour or so is if I am so tired I have headaches. At the moment I usually go to bed about 1 and sometimes dont wake untill 12. I dont really think this is helping, and Im told that if I went to bed earlier I would be able to get up easier ( I have the worst time getting up) However I fail to see the point in doing so if even when I go bed later can still lye awake for two hours.

Also I can't sleep at all unless I actually feel sleepy.

As I am typing this it is 11.21pm. I have been up since 6.30 and didn't go to bed until 1.30, so I got maybe four hours sleep. I do feel tired at the mo but I know as soon as I go to bed I willl just be lying there for two hours?

Can I ask, Have you been this way both on and off gluten? I am definetly.

If you don't want to get melatonin(sp) from the health food shop and you aren't dairy intolerant, try drinking a glass of warm milk a bit before bed, have read that it can help.

*sorry this is kinda long, I just found you post interesting as you sound alot like me

amber-rose Contributor

Hi Saz!! Wow, we sound sooo much alike!! And yes, I've been this way on & off gluten, but it seems to have gotten worse about the last month or so.

I bought some Melatonin, & I'll give that a try. The thing is, I dont know if this brand is gluten-free. I read the label & it looks safe, but you never know. So does anyone know if the brand 'Nature's Bounty' is safe?

Saz Explorer

I can't help you there, I live in Australia. You could try a web search for the company tho, some places have ingredients and allergen statements on there websites.

Nantzie Collaborator

For my whole life, before going strictly gluten-free, I had exactly the same type of insomnia as you're describing. I call my experience with it brain-buzzing insomnia. Because it feels almost like an internal vibration. If you haven't already, you might want to go completely strictly gluten-free; no cross contamination, no cosmetics, haircare, lotions or other personal care products with gluten. I'm extremely sensitive to cross contamination and even minute amounts of gluten. If I get even a little bit glutened, even if I don't have any other symptoms, I will always get insomnia. Everyone has different symptoms, so your insomnia may or not be related to gluten.

Other than that, I've found that The History Channel is a great channel to fall asleep to. I have found that the key to falling asleep with the TV on is finding something that you have a true interest in, but also nothing that is new information. For me, the best genre is Rome or Egypt. They rehash those two cultures ALL the time. I find it interesting, but I've seen and heard just about everything that the History Channel has about it. So I can turn it on and kind of listen but mostly zone out on it.

I made the mistake of watching a program on String Theory (physics) when I got glutened recently, which I didn't know much about, and it was so interesting that I was up until 4am. :rolleyes:

It can't be something that you find irritatingly boring though. My husband is into political history and I'd rather get hit in the head with a rock than hear another thing about the history of political parties. ACK!!! :lol: I'm sure with all the years of my watching Roman history at 2am while he's trying to sleep, he feels the same about Rome and Egypt.

B)

Nancy

  • 2 weeks later...
super-sally888 Contributor

Hi,

I've really found that exercising help with my sleeping - before I got into exercise I also had problems sleeping, now it is much better as far as sleeping at night goes (mind and body are both tired)...... also maybe you have to retrain yourself to sleep at the time you want, very consistent night-time routines, environment etc.. It may take some time... Also can help to get up at the same time every day... even if you are tired... cuase that may help in the body clock resetting.

Are you able to nap at all during the day? Catching some catnaps may help... I read somewhere that day time naps probably shouldn't last for more than an hour, and none after mid-afternoon. Usually I can't fall asleep during the day (unless I am super zonked - which happens from time to time), but just lying down for 45 mins and doing nothing can really help with energy levels and focus...

I actually like to do sudoku at night. I lie in bed and do one. Then roll over and sleep. It is really part of my switch off routine.

Sally


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  • 2 weeks later...
qvista Newbie

The makers of Ambien & Lunestra both told researcher Clan Thomas that "they cannot guarantee" their prescription sleep aid is gluten free. Ambien is the only sleep aid that works for me (I am paraplegic with neuro spasms as a result of being struck by a car, also a Celiac). This ticks me off. I am sure if some pharmaceuticals can be manufactured without binders containing gluten and can guarantee this, why not all? Another bit of drug company stupidity: Lasix contains gluten, the generic form, furosemide, does not. It circles back to this, my health is ruined either from no sleep or a sleep medication that works for me with the possibility of gluten contamination. :angry: Any comments?

loraleena Contributor

I use Natrol brand and it is gluten free. It works great for me. Also Valarian works well to. You can take both if you want. Also Rooibus, (Red Tea) is good for sleep. Where do you get time release melatonin??

As far as Ambien goes, can you get it at a compounding pharmacy?

  • 4 weeks later...
Canadiangirl Apprentice

Just a tip for using meletonin ( which is great) you must take it and then get into bed and have the lights off! I have found that it wont work as well or at all if I take it and then putt around before bed. The Melatonin stimulates your natural reaction to it being night time so you have to make sure that the room is dark..try 1mg at first...sometimes i need up to 3 mg. You can get both doses in pill form at the health food store:) I think you can even get it at drugstores too...

good luck!

  • 2 weeks later...
steveindenver Contributor
The makers of Ambien & Lunestra both told researcher Clan Thomas that "they cannot guarantee" their prescription sleep aid is gluten free. Ambien is the only sleep aid that works for me (I am paraplegic with neuro spasms as a result of being struck by a car, also a Celiac). This ticks me off. I am sure if some pharmaceuticals can be manufactured without binders containing gluten and can guarantee this, why not all? Another bit of drug company stupidity: Lasix contains gluten, the generic form, furosemide, does not. It circles back to this, my health is ruined either from no sleep or a sleep medication that works for me with the possibility of gluten contamination. :angry: Any comments?

I rec'd an email from Sepracor, the makers of Lunesta last week, stating Lunesta has been confirmed to be gluten-free.

  • 1 month later...
talk2et Newbie
For my whole life, before going strictly gluten-free, I had exactly the same type of insomnia as you're describing. I call my experience with it brain-buzzing insomnia. Because it feels almost like an internal vibration. If you haven't already, you might want to go completely strictly gluten-free; no cross contamination, no cosmetics, haircare, lotions or other personal care products with gluten. I'm extremely sensitive to cross contamination and even minute amounts of gluten. If I get even a little bit glutened, even if I don't have any other symptoms, I will always get insomnia. Everyone has different symptoms, so your insomnia may or not be related to gluten.

......

Nancy

Hello Nancy,

I found your posting when I searched for brain-buzzing and insomnia. I was hoping to get some input from you. I have these weird reactions that only seem to happen at night. It is almost like an internal vibration, just like you describe it. As soon as I fall asleep or when I have been asleep for some time, I am awakened by some weird brain-buzzing. Sometimes I also have heart palpitations, but that improved once I cut glutamate out of my diet. Do you think this could be gluten related?

Thank you.

Eve

  • 4 weeks later...
JNBunnie1 Community Regular

Hi Amber, here on the Celiac website's FAQ's there is a list of celiac-safe and non-safe ingredients, I'd get the bottle and sit in front of the computer and make sure every ingredient is not on the unsafe list.

Melatonin works very well, I've had problems falling and staying alseep all my life, but especially in the first year after I found out about my celiac. It'll get better, I used to use Benadryl too. Melatonin is a lot better for you, because it's something you body creates already, it's just more of it.

  • 2 weeks later...
GRUMP 1 Contributor

You all make me want to cry. I thought this was all just me the more I read on here the more I realize I am not alone in this BIG gluten filled world. As some of you have written if I get 4 to 5 hours worth of sleep a night I am lucky. Thats even on my bed pills. Then there is as some of you have also said the night terrors. They are BAD, I have learned to wake my self up from them but it only done by screaming, moaning, jerking, kicking, or any thing else I can do to get my wife's attention. Then she is able to help me get awake the rest of the way. Then there is the constant ringing in the ears. Any one else have that problem? I have been to the Dr. but they say I am fine, LOL......... Oh my I could just keep going on but it would all be just to long. SCREAM..........

  • 2 weeks later...
Moses Newbie
You all make me want to cry. I thought this was all just me the more I read on here the more I realize I am not alone in this BIG gluten filled world. As some of you have written if I get 4 to 5 hours worth of sleep a night I am lucky. Thats even on my bed pills. Then there is as some of you have also said the night terrors. They are BAD, I have learned to wake my self up from them but it only done by screaming, moaning, jerking, kicking, or any thing else I can do to get my wife's attention. Then she is able to help me get awake the rest of the way. Then there is the constant ringing in the ears. Any one else have that problem? I have been to the Dr. but they say I am fine, LOL......... Oh my I could just keep going on but it would all be just to long. SCREAM..........

Hey Grump, yes, I have had ringing in the ears for many many years. As long as I can remember. It was about 30 years before I was dianosed with celiac disease and now it is better. But the ringing continues day and night. Nothinbg stops it.

WA4MOE

runningGF Newbie
Hi! I'm 14 (15 on Nov. 5th!!) & I've been gluten-free for about 6 months now. I had trouble on getting all the gluten eliminated, up to about a month go. And now I have absolutely no problems now that the glutens is all out of my diet!! :D.

But I do have trouble getting to sleep...and its really frustrating. I'm homeschooled, so I can sleep in later, which is good when I have those nights when I only sleep 2 hrs.

I don't even start to get tired until about 12:30 am.! I try to read a book from 11:45-12:??. but once i close my eyes to go to sleep,,BAM, i'm wide awake again! its so frustrating. My mom had me take benadryl a couple nights in a row, just because I was like a zombie for 2 weeks, only getting about 3-4 hrs a night. But usually once I'm asleep, I'm definiteley asleep. For about the last two nights I fell asleep at about 1 am (which is REALLY good for me), & I slept for about 11 hrs! I did grow an inch in about a week! lol, & I know that can make you tired. But the problem for me is, trying to get to sleep!!

Anyone have the same problem or have any ideas for this? I dont want to get addicted to Benadryl if I take it every night. Like last night, I didnt take it & i just layed in bed til about 2 am, then I got tired of not being tired, so i took one. :unsure:

Yah. I get a tingly feeling in my legs sometimes, AND CAN'T GO TO SLEEP. bUT WHEN i FINALLY DO..I wake up an hour or twp later wide awake.

gfp Enthusiast
For my whole life, before going strictly gluten-free, I had exactly the same type of insomnia as you're describing. I call my experience with it brain-buzzing insomnia. Because it feels almost like an internal vibration. If you haven't already, you might want to go completely strictly gluten-free; no cross contamination, no cosmetics, haircare, lotions or other personal care products with gluten. I'm extremely sensitive to cross contamination and even minute amounts of gluten. If I get even a little bit glutened, even if I don't have any other symptoms, I will always get insomnia. Everyone has different symptoms, so your insomnia may or not be related to gluten.

Other than that, I've found that The History Channel is a great channel to fall asleep to. I have found that the key to falling asleep with the TV on is finding something that you have a true interest in, but also nothing that is new information. For me, the best genre is Rome or Egypt. They rehash those two cultures ALL the time. I find it interesting, but I've seen and heard just about everything that the History Channel has about it. So I can turn it on and kind of listen but mostly zone out on it.

I made the mistake of watching a program on String Theory (physics) when I got glutened recently, which I didn't know much about, and it was so interesting that I was up until 4am. :rolleyes:

It can't be something that you find irritatingly boring though. My husband is into political history and I'd rather get hit in the head with a rock than hear another thing about the history of political parties. ACK!!! :lol: I'm sure with all the years of my watching Roman history at 2am while he's trying to sleep, he feels the same about Rome and Egypt.

B)

Nancy

LOL.... exactly what I do but.....

On the original question....

But I do have trouble getting to sleep...and its really frustrating. I'm homeschooled, so I can sleep in later, which is good when I have those nights when I only sleep 2 hrs.

I don't even start to get tired until about 12:30 am.! I try to read a book from 11:45-12:??. but once i close my eyes to go to sleep,,BAM, i'm wide awake again! its so frustrating. My mom had me take benadryl a couple nights in a row, just because I was like a zombie for 2 weeks, only getting about 3-4 hrs a night. But usually once I'm asleep, I'm definiteley asleep. For about the last two nights I fell asleep at about 1 am (which is REALLY good for me), & I slept for about 11 hrs! I did grow an inch in about a week! lol, & I know that can make you tired. But the problem for me is, trying to get to sleep!!

This is so classic... indeed perfectly normal but you are doing everything to make your condition worse.... keep reading and let me explain.

All other problems aside its natural to think that if we don't get enough sleep we should sleep longer to catch up.... its what our bodies try and make us do.... its everyones 1st reaction.

I want you to read this and REALLY think.... what if they key to falling asleep is what time we got up...not when we went to bed the night before. This is what most sleep studies have found... I had a friend with a girlfriend who was bad enough to be admitted into the national sleep disorder clinic.... and they told her basically you have to FORCE yourself up at the same time EVERYDAY...

They will refuse to treat anyone that won't do this.... and the place is incredibly hard to get into... you need a VERY persistant GP... it is massively overbooked.

Anyway... the point is we all do this the wrong way by nature... its counter-intuitive.

Some rules.... you cannot catch up on sleep (except in a limited way the next day).... the idea of going a week and then catching up at the weekend doesn't work.... BUT what it does do is disrupt your bodies rhythm of sleep/waking....

This type of sleep problem is very common ion shift workers who change shifts frequently.... I have some experience from working offshore where you are on 24x7 call but its also a huge safety issue on rigs etc. which is why people get 3-4 week rotations because if you changer peoples schedule everyweek they never adapt (some people just find it easier than others)...

The 2nd point is your homeschooling.... this is again something to look into deeply (not the homeschooling but WHERE/WHEN)

Again it seems if we associate our bedroom with working/study we will tend to find it harder to sleep.... my father refuses a TV in his bedroom for this reason... (I don't)... but anyway.. if you have no sleep probs then fine but if you do have sleep problems then working in your bedroom is probably a bad idea.

I am no big fan of going to schools (I hated/detested/lack words to describe how much I hated school and wish I had been home schooled so don't think I'm anti-home school..I most certainly am not)...

However even people who work from home can have problems detatching the work side and the home side ....

We were never really designed as humans to have this lifestyle and have long thinking periods but we adapt... (very well) however it also means when we are thinking hard about things we can find those things hard to let go of at night.

The day is obviously never long enough.... we always have 1-2 things we didn't get round to.... and its no big deal unless you can't forget them until the morning....

Writing them down often helps.... that way your mind relaxes knowing the list will be there in the morning but also disassociating those thoughts pertaining to work is better... home workers often find this part difficult....(I do)...

So I'd say have a think.... does what I say make sense.... because you are going to need some commitment... the absolute first thing is to force yourself up at the same time EVERY morning... and it sucks.... for 2-3 days... luckily you can partially rearrange things around this (beinh home schooled) but you can't really just lay about. you need to be active .. do your study and think and establish that pattern.... YOU WILL GET WORSE BEFORE BETTER ... it takes a few days to reprogram, it shouldn't be more than a week to really start benefiting but remember if you break it you start back at square one and have to go through the hardest part AGAIN....

Benefits of this method are its free and non addictive.... and unless you are REALLY REALLY badly insomniac after a few months you can start giving yourself more leeway... and if you start having problems a small correction usually works... its not like you are stuck for life.... like gluten-free....

For me I can allow myself late nights and stuff every so often but then I need to be a bit stricter 1-2 nights.. and I'm fine...

Ky Celiac Newbie

I didn't realize sleep problems were so prevalent among celiacs. There is a word of caution about Ambien. There have been a few cases of people eating during the night (even preparing a full meal) and then not remembering. This is a real concern for those of us who have "forbidden food" in the kitchen or family room.

There have also been warnings about the amnesiac effect of Ambien and other sleep meds. I have experienced episodes of walking & talking in my sleep (with eyes wide open) and then not being able to remember all or parts of what happened. Try explaining: " I don't remember saying there were dogs and cats and Dick Cheney in the rocking chair" to someone who thinks you were hallucinating. Thank goodness they publicized the warning. I should note this was Ambien CR and could have been helped along since I was extremely tired and had an infection when it happened. I'l like to hear from anyone who has had a similar experience.

I know what it's like "When sleep won't come the whole night long".

blueeyedmanda Community Regular

Just recently I have started having trouble falling asleep and once I do get to sleep I wake up in 2-3 hours and then I am wide awake. So I toss and turn until 6:30 when the alarm goes off. I started using Tyelnol PM so I sleep through the night. When I don't get sleep I am not very productive at work.

Ed-G Newbie
LOL.... exactly what I do but.....

On the original question....

This is so classic... indeed perfectly normal but you are doing everything to make your condition worse.... keep reading and let me explain.

All other problems aside its natural to think that if we don't get enough sleep we should sleep longer to catch up.... its what our bodies try and make us do.... its everyones 1st reaction.

Anyway... the point is we all do this the wrong way by nature... its counter-intuitive.

Some rules.... you cannot catch up on sleep (except in a limited way the next day).... the idea of going a week and then catching up at the weekend doesn't work.... BUT what it does do is disrupt your bodies rhythm of sleep/waking....

This type of sleep problem is very common ion shift workers who change shifts frequently.... I have some experience from working offshore where you are on 24x7 call but its also a huge safety issue on rigs etc. which is why people get 3-4 week rotations because if you changer peoples schedule everyweek they never adapt (some people just find it easier than others)...

For me I can allow myself late nights and stuff every so often but then I need to be a bit stricter 1-2 nights.. and I'm fine...

I also have sleep problems, but it is due to a number of causes. Besides celiac, I also have epilepsy and I have at times (including currently) worked the graveyard shift. With all this going on, there is no way I am going to have what is viewed as a "normal" sleep pattern. And while I can generally get myself to sleep at night, there are many times when I am going to have to work at relaxing so I can fall asleep, and there are times when I fail. Furthermore, while I can manage six hours of sleep, seldom am I able to stretch it out to eight.

Ed

  • 4 weeks later...
redharmony Newbie
You all make me want to cry. I thought this was all just me the more I read on here the more I realize I am not alone in this BIG gluten filled world. As some of you have written if I get 4 to 5 hours worth of sleep a night I am lucky. Thats even on my bed pills. Then there is as some of you have also said the night terrors. They are BAD, I have learned to wake my self up from them but it only done by screaming, moaning, jerking, kicking, or any thing else I can do to get my wife's attention. Then she is able to help me get awake the rest of the way. Then there is the constant ringing in the ears. Any one else have that problem? I have been to the Dr. but they say I am fine, LOL......... Oh my I could just keep going on but it would all be just to long. SCREAM..........

It is 3;45 am and I am WIDE awake - again. I could also cry reading about all of this as it's made me aware that none of this is my imagination, and I am not alone. I am 40 and in peri-menopause, so it's hard to know what is causing what, but, about the ringing in the ears...

Here's my story briefly...about 4 years ago I was so sick all the time I couldn't take it anymore. I shop Wholefoods and eat organic, and no "junk" but I was gaining tons of weight. I'd NEVER been overweight in my life. I was also sick and depressed and, and, and...

I found a book at WF called "Fat Flush" and decided that maybe I needed to "detox". Anne Louise Gittleman who wrote Fat Flush takes you off of all wheat, dairy and sugar for 10 days. I'm not sure I can expain how this changed my life. I lost the weight I had gained, but that wasn't the remarkable part. It was the insomnia, the anxiety, depression, mood swings, energy, weakness... and I noticed (only after I'd gone back to eating wheat again) that the ringing in my ears had stopped when I was on her program and it was back when I wasn't.

I am currently in the middle of a HUGE move and have been living in an Extended Stay hotel with a hot plate where it is impossible to make real food and we are living on canned soup and cereal. I feel, physically, like I'm going to die and it's frustrating knowing I can make all of this stop by dumping the gluten (and for me, removing the dairy and sugar changed my life as well).

But, yes, I remember losing the ear ringing when I stopped with the wheat, dairy and sugar.

Good luck!!

  • 2 months later...
Liz92 Rookie

im fourteen too and can't sleep worth anyhting, but im not homeschooled... don't have any tips, i jut thought id say

  • 3 weeks later...
sickchick Community Regular

Wow... my story's the same lol :lol:

The worse I feel the higher the ring in my ears and it all started when I started having the reactions years ago. Sleep troubles are the same I feel like my brain won't shut off at night. I do exercise every day and that helps. And I have my alarm set for 8:30 every morning. Just because.

I feel so bad for these kids who are trying to go to school. When I was in school (about age 14) I was out of school for so long at one point, my parent's had to hire a lawyer because the school accused me of "faking it" and refused to let me back in... in college my psychiatrist told me there was no way I could be feeling these things (I was reacting to the meds he was trying to feed me and everything else) and he quit returning my phone calls... psh.

I can't wait to get off wheat after my tests...

happyhappy :huh::lol:

sickchick

blueeyedmanda Community Regular

I want to say my sleep problems are from anxiety, they seem to only exist on work nights and I just started having them in the spring, since I went gluten free a couple years ago I doubt that is the problem. My sleep problems are getting frustating though.

  • 2 weeks later...
Kelli Newbie

I have ear ringing and buzzing from "white noise" the quieter the room is the louder it is for me. I sleep with a fan on. The breeze keeps down the sweating and temp differences and the noise of it lulls me to sleep and gets rid of the ringing. T.v. helps little because I don't fall into a deep sleep-whatever is on t.v. becomes part of my dreams and I hat ewaking up to an infomercial-it pisses me off then I'm up for hours on end all mad. I have used benadryl for a long time-I learned in college from my professor that you cannot get addicted to it. It won't harm you if you use it continually as long as you follow the directions. It knocks me out until my alarm goes off-although it takes an hour or so to really wake up and sometimes I have a really bad "Benadryl hangover" where I'm tired until the afternoon. I stay on a schedule and take it around dinner time so I know when everyone else is going to bed I'll be in half pass out mode already. Ambien never worked for me and I like to feel sleepy to the point where I can't keep my eyes open any longer instead of lying there waiting to fall asleep.

Any hoo....try a fan. It does wonders!!!-Not a quiet one though-the cheap little $10 dollar ones work the best.

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    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
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