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1 Year Anniversary

hh73

By hh73
in Coping with Celiac Disease

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hh73 Apprentice
hh73
Posted

So I was officially diagnosed about 13 months ago.

I am 23 years old.

Before Diagnosis: I was sleeping 15-18 hours a day, way too tired to work out. Eating like a pig.

Now: I sleep about 9-10 hours a day. I can do my routine as a student, and I can work out, but not with the kind of energy that would be expected of someone my age. For example, I can walk but not run, do light weightlifting, and pushups. I eat slightly less than I did before, but now its all very nutritious because I cook half of it.

My "celiac belly" is still there.

My weight hasn't really changed. It was 210-215 before diagnosis, and now its 200. As a male, I stand at 5 feet, 10 inches

When am I going to get better? My last bloodwork (6 months ago) said that I am not getting any gluten in my diet. I have been taking my multivitamin. What am I doing wrong?

Should I be going easy when I work out, or is it time to try to work up a sweat?

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notme Experienced
notme
Posted

i just passed my first year mark last month. i am still tired as krap. but everything seems to be evening out and i hardly ever get sick anymore (ugh, i probably just jinxed myself) my muscles are rebuilding well - i have a doctor's appointment on the 30th and that is my major basic question: *when* am i going to quit feeling soooo tired?? i can't get a job if i can't stay awake..... :( i went 25 years undiagnosed, how long to recover????

eatmeat4good Enthusiast
eatmeat4good
Posted

Celiac Belly may respond to the Paleo way of eating. Just eliminating gluten may be leaving too many carbs in your diet and your body doesn't know what to do with them...the pancreas puts out insulin to store all the extra carbs as fat...and the belly stays. If you eat more protein you might feel better and find that your metabolism responds better.

Mark's Daily Apple is my favortite site for Paleo. It is very informative about why it works and how to do it right. As a matter of fact today is the start of the 30 day challenge to try this way of eating. I always respond really well to this diet and it is perfect for Celiacs.

You maight be surprised at how much energy you regain and how quickly it happens when you stop the grains. It amazes me still. I've been on and off of it several times this year. Each time I go off it because I want a treat it results in gaining belly fat back. I have more energy to exercise when I eat this way. So I'm trying to make it a permanent lifestyle.

I think men's bodies respond especially well to this. My son was overweight and not really losing or toning up even after months on being gluten free. He is 16 and we both try to avoid grains and carbs now so we can use our bodies better. He has lost weight and gained muscle rapidly. I don't think it is for everyone, but read about it and see if it is for you.

I love the information and the articles about why gluten is bad for everyone and why all grains are too. It might not work for you, but it might be worth a try. We felt way better just 5 days in! Muscle tone is improving rapidly. The only problem is Snickers are not Paleo...but we don't worry about that every once in a while! :D

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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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