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Has This Happend To You

cat3883

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cat3883 Explorer
cat3883
Posted

I am 6 days gluten free. I must say my brain fog is better but I am having trouble sleeping. I go to sleep rather easy but I am waking up around 4 or 5 am the last few mornings a cant go back to sleep. I must say one of my main symptoms of celiac disease was fatigue as I could and would sleep about 12 to 14 hours a day. Please tell me this gets better!! But on a good note I have been told by a few people that I have more coloring in my face.

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ShayFL Enthusiast
ShayFL
Posted

Yes it does get better. In the early days I was waking up that early because I was "starving". I ate like crazy for the first 6 weeks. My body was playing catch up. I sleep great now!

lisa25 Rookie
lisa25
Posted
Yes it does get better. In the early days I was waking up that early because I was "starving". I ate like crazy for the first 6 weeks. My body was playing catch up. I sleep great now!

Shay,

Kind of off track from the original post, but I saw that you recently became corn free, grain free...etc. What made you decide to do this? Did you get tested? I have been tested through enterolab and came back positive for gluten, dairy, and soy. I am wondering if there are more things since the test only included gluten, dairy, soy, egg, and yeast. I have been feeling better, but not all the way better. I still take excedrine several times a week, still get really tired, still feel nauseas some of the time.

ShayFL Enthusiast
ShayFL
Posted

Over time you just realize what bothers you and you cut them out. I have been corn free for years. It always bothered me. I recently tried adding some back in. It still affects my blood sugar but no other symptoms. I am trying to keep my BS stable, so I wont eat it often...hardly ever...if at all. I dont need it in my diet. I cut out the grains because in general I do not tolerate starchy carbs very well. It really messes with my BS and I get digestive symptoms. The SCD diet is what I eventually adopted because it is what I am basically eating/not eating anyway.

ravenwoodglass Mentor
ravenwoodglass
Posted
I am 6 days gluten free. I must say my brain fog is better but I am having trouble sleeping. I go to sleep rather easy but I am waking up around 4 or 5 am the last few mornings a cant go back to sleep. I must say one of my main symptoms of celiac disease was fatigue as I could and would sleep about 12 to 14 hours a day. Please tell me this gets better!! But on a good note I have been told by a few people that I have more coloring in my face.

It should resolve soon. One thing that may be going on is that gluten was a neurotoxin for you. Your brain got used to having it's own gluten supplied drug stash, so to speak, and now it has to learn how to sleep without the soporific effect of the gluten. For most this should resolve within a couple of weeks at the most. As long as you don't regluten.

Puddy Explorer
Puddy
Posted

Yes, the same thing happened to me. The first 6-8 weeks I was gluten-free I woke up at 4AM every day! It was driving me crazy, but it gradually stopped happening and now I get a full night's sleep.

Mtndog Collaborator
Mtndog
Posted

it happened to me as well and eventually got better. Hang in there- up from here!!!!

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MNBeth Explorer
MNBeth
Posted

Yup; me too. Now I'm back to sleeping like the dead.

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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
      Finding gluten free ingredients

      By captaincrab55 · Posted

      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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