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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Sleep Too Much Prior To Diagnosis Of Celiac
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My boyfriend has just been diagnosed with Celiac disease. Up until this point he sleeps up to 20 hours a day and just can't get up. Needless to say, this affects him tremendously with work etc. Did anyone have trouble with this prior to going gluten free and did it get better once gluten free? I see a lot of posts that fatigue is worse after going gluten free. Is it going to get worse for him? I theorize that maybe he is so tired because he has not been getting the proper nutrients because of the disease but maybe I am wrong?

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My boyfriend has just been diagnosed with Celiac disease. Up until this point he sleeps up to 20 hours a day and just can't get up. Needless to say, this affects him tremendously with work etc. Did anyone have trouble with this prior to going gluten free and did it get better once gluten free? I see a lot of posts that fatigue is worse after going gluten free. Is it going to get worse for him? I theorize that maybe he is so tired because he has not been getting the proper nutrients because of the disease but maybe I am wrong?

Nope, you're right, the body isn't absorbing the nutrients needed and so he sleeps a lot. My fatigue and lethargy finally cleared up when I got rid of the last of the gluten in my diet. I had ignored the four letter word malt in my cereals and alcoholic drinks for years - I should have known better. Anyhow, celiac is an autoimmune disorder and progresses differently for everybody and everybody's healing occurs at different rates. But generally speaking - once ALL of the gluten is out of his diet, things should start improving. But many factors affect the healing rate - how long sick, how much damage, how well he is maintaining the gluten-free diet. Is he having other foods bother him? A lot of the time diary is hard to digest until the intestines have healed enough. Just focus on the gluten-free diet, and beware of cross contamination and hidden gluten sources in meds, toiletries and such. Good luck and keep us posted!

Annette

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He may notice that initally on the gluten-free diet, still wanting to sleep quite a bit. The first month or so, I felt like I couldn't get enough sleep. I believe it was my body in a healing mode. Everyone's stories of healing are different. I think that his sleep pattern will eventualy improve--it's hard to say how long that will take. As he begins to absorb his food and the vitamins and minerals he needs to begin the healing process, I'm sure that he will begin to feel more energetic as well.

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Thank you for your fast responses! You mention watching hidden gluten in products such as meds and toiletries. How do we go about finding these out? Is there someplace on the internet or elsewhere that will help figure this out or is it a one product at a time thing? Also, do you know if using certain external products can affect him, such as shampoo and lotions? Or is it just things ingested? He also has DH. Thanks!

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I was also sleeping about 20 or more hours a day. After I went gluten-free, it did not take that long for me to sleep relatively normal. I have been gluten-free for two years and I still have a problem with exhaustion. But, I am almost 64 and went undiagnosed for at least 30 years. I did not find this support group until last year. So, what I did in the beginning was use my wok almost daily. I cut up fresh meat and fresh veggies. I used only olive oil. I put this on plain rice. Then I went through my frig and pantry. I called every company in there to find out what was safe. It took me weeks, but I wanted to get better. I have found some of the better gluten-free foods from this forum. I order my bread from Kinnickinnick in Canada. Whole Foods, Henry's and some health food stores have many gluten-free items. My local grocery store sells my Tinkyada (sp) pasta. And all the previous stores sell it. Get a new toaster because of cross contamination. Get gluten-free shampoos because it can get in his mouth. Anything that gets in his mouth has to be gluten-free. If you have any doubt do not eat, until you call. Most manufactures have info on their websites and most will answer a email. I also lived on my computer in the beginning asking about gluten in their products. If they did not answer me, in the garbage it went. It used to be that you could not get a pharma (can't spell it) company to respond to an email about a generic drug. My expierence has now been that they answer within 24 hours. Good luck. Everyone here will have wonderful ideas to help you transgress this path. He will get better.

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i used to sleep so much and felt very lazy before I was dx. My energy got better and a B-12 shot really helped me. It has taken me 6 months now to controll the D, and the energy has returned but I still have a long way to go. So patient, it will come. :):)

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Before my diagnosis, I was sleeping 12 - 14 hours and FORCING myself to get up...it was so awful. I went immediately gluten-free upon diagnosis, it was tedious at first trying to figure everything out.....but after just a few days on the diet, I felt MUCH better. Physically, I usually have much more energy now, and only sleep 8 hours usually, over two months gluten-free. Mentally, I'm on a bit of a roller coaster, but there is much in my life to keep me stirred up.

This forum saved my life....there is so much information here. Your first instinct will probably be to go to Whole Foods, but be warned, I had a breakdown the first time there, as many people do, I hear. It's overwhelming but it DOES get better. If you have a Trader Joe's anywhere nearby, that is fantastic. And, there are some great recipe threads on here to look into where wonderful people have taken the time to post great foods.

blessings -

Susan

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I used to have chronic fatigue and would be so tired it was a major effort to go from the bedroom to the bathroom. I almost lost my job during that time. After two years I have a lot of energy and only need 6-7 hours of sleep. It was a two year process to become fully healthy but it is so worth it. I have a new job that is extremely demanding but I have the health and energy to handle it.

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wow things are making so much more sense. I would sleep for a good 12 hours and still get up exhausted.

I just got diagnosed with Celiac about a month or so ago. So i'm still working out all my symptoms.

I thought i was just lazy, but maybe my celiac had alot to do with it.

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Guest Babbia

I would sleep 12-14 hours regularly prior to going gluten-free. Everyone in my life complained about my sleep habits, but little did any of us know!

:)

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I could easily sleep 12-14 hrs before diagnosis and gluten-free. The hours I was awake, I wasn't awake. Once I went gluten-free, my sleep habits and alertness improved pretty rapidly. I may have slept more for a few weeks, (someone said, "healing mode;" that was exactly what I felt like). I know that my digestive system is still healing; I'm still having some problems there, and facing additional intolerances. Fortunately, however, I'm awake.

Oh, and also significant, is that I sleep better. I use to wake up tired and did a lot of tossing and turning, and just yuck sleep. Now I sleep restfully and for far less time; I awake feeling refreshed.

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Guest BERNESES

Before I went gluten free I was sleeping 12-14 hours a night plus a 3-4 hour nap during the day. I was really lucky that it was summer time and Ii wasn't in classes! I attributed it to depression and grief because my mom had just passed away. I'm sure those factored in. I actually went on Wellbutrin because I was so chronically exhausted.

When I finally went gluten-free about 6 months later, I was able to go off the wellbutrin within weeks. I still need more sleep than the average person (like 10 hours at night) but generally the only time I need to nap is when I'm glutened or it's just a good nap day.

You asked about finding the hidden gluten. Companies now clearly list wheat (major allergen) but you still have to look for rye, barley, oats, malt. There's a list of forbidden ingredients on this website that I printed out when I first went gluten-free and carried around with me. Also, there's a big 70 page list from the Delphi gluten free forum but it's about a year old now.

For shampoo, soaps, etc. 2 companies that will clearly list wheat are Dove and Neutrogena.

He will eventually need less sleep, but like everyone else said, we all heal at different rates so it might take awhile.

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Before I was gluten-free, I did not sleep for more that 2-3 hours at a time all night long. I was always exhausted and sick. Right after I began the diet, I suddenly could sleep deeply all night--8-9 hours straight. I felt like I could not get enough sleep. That lasted for about 4 months.

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I can never get enough sleep, I'm always tired and on the days I'm home I take a nap every afternoon, if I don't I can't even cook dinner.

I was DX with FM/CFS 5 years ago and have hypothyroid..can't get my numbers down even with the synthroid

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I thought i was just lazy, but maybe my celiac had alot to do with it.

OH MY GOD!!! That's just what I thought too! (If I had a dolar for every time I have said that....)

Thank god for the miracle of the internet & forums...

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I can never get enough sleep, I'm always tired and on the days I'm home I take a nap every afternoon, if I don't I can't even cook dinner.

I was DX with FM/CFS 5 years ago and have hypothyroid..can't get my numbers down even with the synthroid

Try some Armour thyroid (or other T3 source if you are a veggie). It's done great things for me. Might not work for you. but it's at least worth a try. Levoxyl migh as well be a placebo to me. I need large amounts of T3.

I've been tired all week and found out that my protein powder has gluten in it. The replacement I ordered also has gluten, despite the "gluten free" label. I can't wait until I'm completely gluten free for several months to see how much energy I have.

I was tired to the point that it seriously effected my reaction times and made me a danger to myself when I'm on anything less than 15mg below the Armour dose that causes me occassional heart palps and a stimulant. It's hard when you're an adrenaline junkie that's too tired to get your fix. I used to do bicycle distance riding and let me tell you, it sucks when you space out on the motorcycle and end up asphalt surfing. The only good part is all the new gear I'm buying (Mmmmm, leather).

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I was sleeping about 16 hours a day just before and for a few months after being diagnosed, I was anemic. It wasn't until a full year after going gluten-free, that I didn't tire easily (i.e. I wouldn't wake up tired, but I could still tire if I walked around downtown shopping etc). It clears up and then you feel amazed at the amount of energy you have! I also used to get really lethargic and an almost doped up feeling after eating during those few months after diagnosis, thankfully that went way. It was like I had just eaten a huge Christmas dinner, every day for three four months! Awful, it seems like you will feel tired forever, which can be depressing but it goes away. Like others have said, once he heals, it won't sleep as much. Unless his fatigue is due to something else, but chances are it's from lack of vitamins and nutrients.

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    • Then she has already been diagnosed. Dh equals celiac, although I never heard of a MILD case. It's usually quite extraordinarily disturbing.
    • I would stick to a very basic gluten-free diet as recommended by Dr. Fasano and other celiac experts.  It would not hurt for a short amount of time and might get him through his exams.   This is the study about dealing with Trace Amounts of Hidden Gluten (not saying your son has non-responsive celiac disease) Look at Table 1 found a few pages into the report.  The diet is basically, plain meats and fish, veggies, fruit, rice, etc.  — nothing really processed.  It is what I do when I get “glutened” until I recover.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/  
    • Yes do follow up with testing, once confirmed we can help you along the road. Other intolerance and allergies are very common with this disease. Lactose is broken down by enzymes produced by the tips of your villi in your intestines, they are normally the most damaged and in some cases just gone. As this is a autoimmune disease it is VERY common to develop other issues, including other AI diseases. I developed a ton of food intolerance issues and some messed up allergies like corn.
      WE do suggest a whole foods diet starting off only. This boost healing, and makes seperationg food related issues easier. I can provide list of processed food alternatives....there is gluten-free versions of everything if you know how to track them down. But this is more then just a food change, it is a whole life style change. The transition is frustrating at first but becomes second nature with great benefits in the end.
    • Please  follow the advice of celiac experts and get your daughter tested before going gluten free,  Your doctor, like many, is woefully misinformed.  You should be tested too (all first degree relatives), even if symptom free, and especially since your mother was recently diagnosed.  Learn more about testing from the University of Chicago.  They are one of many excellent celiac centers, but I personally like their website.   http://www.cureceliacdisease.org/screening/ Celiacs can have no symptoms, have anemia, have GI issues or not....the list is endless.   https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/ Eating gluten free is not expensive.  Buying processed Gluten Free food often is expensive though.  Instead eat whole natural foods like beans and rice!   Cook like Ma Ingalls (Little House on the Prairie).    It is a learned craft.  Plus, you will save by not eating out!   I wish you all well!    
    • We in the UK he takes a pack lunch and have asked for a health plan so wait and see. Not easy when he taking his gcse and he wants to do well. Thanks for the advice 
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