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Want To Sleep 24-7

CruiseWriter

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CruiseWriter Apprentice
CruiseWriter
Posted

Not sure if I really am Celiac or not (unhelpful GI says no) but I want to sleep all the freaking time. Can barely work or stand on my feet, bloated like a stuffed pig and weigh 240 pounds,have mouth ulcers,depression and acid reflux that was so bad, I was misdiagnosed with asthma and put on steroids that I never needed. I sleep 10 hours a night and wish I could sleep around the clock....I hate being awake. Oh yeah, I've been gluten free a week and a half and cheated once because I came face-to-face with a Wawa pretzel that I coudn't pass up.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, your symptoms are all the miserable symptoms of Gluten Intolerance, which is just as serious as Celiac in terms of how it destroys your life. Get off the gluten as diligently as you can. It is very important. I ballooned up to 200 lbs and cried or slept all the time. Just miserable and could sleep all evening and all night and barely functioned the next day. You might feel rotten for a while before you start to feel better but you really could have all that weight from inflammation. I don't know why but it happens to some people. I weigh 115 now and am back to a normal size and feeling pretty good for all the hell my body has been through. Give is 6 months and see how you feel. I am only on month 7 of the rest of my life...but it feels great and I no longer sleep all the time. When I do need a nap, it is refreshing, not like the gluten fatigue you are describing which is very real. Wishing you fast healing.

Goof Rookie
Goof
Posted

Hang in there Cruise! I had many of the same symptoms you have, same answer from the GI, and the gluten-free diet has helped GREATLY! Energy level through the roof, acid reflux has gone down quite a bit...the overall improvement blew my mind! Give it another week or two, especially since you were just glutened, and hopefully you will start to feel better! I'm usually a little bit off for a few days, sometimes a week or more after I've been glutened. If you're not feeling better in a few weeks on the gluten-free diet, you may want to get your thyroid checked. That's a simple blood test, and may explain the tiredness. But I think you may be like me - intolerant, but no positive diagnosis for celiac.

P.S. - I know what you mean about Wawa pretzels! I used to love those. Now, I just stick to their coffee.

txplowgirl Enthusiast
txplowgirl
Posted

I weighed 200 or more since I was 14. No diet ever helped until I went on a whole foods diet 2 years ago. I have since lost close to 50 lbs. I can't eat any of the gluten free foods because I react to them..

I eat plain meats, fish, chicken, brown rice, sweet potatos, carrots, corn, asparagus, lettuce, peas, peanut butter, nuts, tostito chips, grapes, apples, etc.

It's gonna take awhile for you to heal.

I went from sleeping 3 to 4 hors a night and falling asleep when ever I got still to sleeping 7 to 8 hrs a night and not needing to sleep during the day. My fatigue has eased up a lot but not perfect.

Hang in there and try to be patient. After all it took several years to get this way, so it's gonna take awhile to heal.

I had all of your symptoms plus a whole lot more. They have, I would say resolved about 70%. I've had this since I was 7, so I figure I have another 3 to 4 years to go before I heal 100%.

I wish you well, good luck.

Txplowgirl

Guest Selhi
Guest Selhi
Posted

I weighed 200 or more since I was 14. No diet ever helped until I went on a whole foods diet 2 years ago. I have since lost close to 50 lbs. I can't eat any of the gluten free foods because I react to them..

I eat plain meats, fish, chicken, brown rice, sweet potatos, carrots, corn, asparagus, lettuce, peas, peanut butter, nuts, tostito chips, grapes, apples, etc.

It's gonna take awhile for you to heal.

I went from sleeping 3 to 4 hors a night and falling asleep when ever I got still to sleeping 7 to 8 hrs a night and not needing to sleep during the day. My fatigue has eased up a lot but not perfect.

Hang in there and try to be patient. After all it took several years to get this way, so it's gonna take awhile to heal.

I had all of your symptoms plus a whole lot more. They have, I would say resolved about 70%. I've had this since I was 7, so I figure I have another 3 to 4 years to go before I heal 100%.

I wish you well, good luck.

Txplowgirl

I have had same problems and never realised why I was tired all day and slept in the afternoon or even evening after coming back from work. My kids would also joke on me that either I work or sleep. I have very unusual presentation of Celiac, I had tiredness and deranged liver functions with Diarrhea which was not that profound. Once I was off gluten after diagnosis, I realised I didnt to sleep and was never tired during the day.

Recently again had tiredness and got the tests done, my Anti-TTG level was high, probably some exposure. So please be patient, it is part of the disease, it shall improve once you leave Gluten products.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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