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J-DUB

By J-DUB
in Coping with Celiac Disease

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J-DUB Newbie
J-DUB
Posted

I'm new to this forum, never posted, but have read a lot of posts and really feel like I could benefit from this forum and help everyone at the same time. I was diagnosed with celiac in 1995 and gluten free since. It was a tough lifestyle to get adjusted to while going through middle and highschool, but I dealt with it because the consequences were too severe. I stay active going to the gym consistently and play sports all the time. I usually have a lot of energy, but recently I've been completely drained even with no activity. I've been eating lots of fruits and veggies and went to my DR. and he gave be a vitamin B shot(for energy), but I still feel tired most of the time. I push myself to go to the gym but I get lightheaded after 10 min and leave. Its tough because I just turned 21 and have played sports my entire life, not to mention that all my friends are out having a good time and I feel like I can only keep my eyes open til 10:00. If anyone can help I would appreciate it. GO HEAT!!!!

-JOHN in Ft. Lauderdale, Fl

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Guest Elizabeth19
Guest Elizabeth19
Posted
I'm new to this forum, never posted, but have read a lot of posts and really feel like I could benefit from this forum and help everyone at the same time. I was diagnosed with celiac in 1995 and gluten free since. It was a tough lifestyle to get adjusted to while going through middle and highschool, but I dealt with it because the consequences were too severe. I stay active going to the gym consistently and play sports all the time. I usually have a lot of energy, but recently I've been completely drained even with no activity. I've been eating lots of fruits and veggies and went to my DR. and he gave be a vitamin B shot(for energy), but I still feel tired most of the time. I push myself to go to the gym but I get lightheaded after 10 min and leave. Its tough because I just turned 21 and have played sports my entire life, not to mention that all my friends are out having a good time and I feel like I can only keep my eyes open til 10:00. If anyone can help I would appreciate it. GO HEAT!!!!

-JOHN in Ft. Lauderdale, Fl

I WAS JUST DIAGNOSED LIKE A MONTH AGO AND IM 18 AND ITS SORTA DIFFICULT AT TIMES.

PS- GO PISTONS

Lisa Mentor
Lisa
Posted

Hey John, good to meet you----

We all have alot of ups and down as we travel through Celiacland. Since you have been gluten free for ll years, I would suggest that you get a full blood work-up to see where you are are regards to your nutrients in and out of your body.

And are you taking in as many calories as you are burning. When your body tells you to slow down, it's telling you something. Look into that.

If you have other questions there are a bunch of people her that most likely will have the answer for you.

Lisa

KaitiUSA Enthusiast
KaitiUSA
Posted

Welcome to the board....if you have any questions let me know...I am here to help:)

inquirer Newbie
inquirer
Posted

Have you had your thyroid checked?

J-DUB Newbie
J-DUB
Posted
  • Author

I never had that tested...What will it detect and what kind of test is it?

inquirer Newbie
inquirer
Posted

It's a blood test that will check for thyroid hormones. Celiacs suffer from autoimmune diseases and hypothyroid is very common. Some symptoms are lack of energy, intolerance to cold, brittle hair, etc.

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Becka85 Newbie
Becka85
Posted

I'm 20 and I've been having the same kind of problem as you. I can sleep for 12-14 hours and still be exhausted a couple of hours after getting up. I have no energy to do anything and no appetite so I have to force myself to eat full meals. I've had this off and on for about a year and I think it may be due to hidden gluten in my diet. I've been rotating my diet to prevent further intolerances from developing but I think there is gluten in one of the new products I tried. I went back to eating food that I knew was 100% safe and I feel much better. It takes a few days to get your energy back though. Have you changed your diet recently? Or are the ingredients different in a product that you've been eating for awhile?

J-DUB Newbie
J-DUB
Posted
  • Author

I'm always lookin for new foods to try or new ways to cook different things so maybe something new I tried had something in it. I'm extremely cautious when I try new foods but have been surprised before. The crazy thing is that I've been gluten free for 11 years and never had a reaction like this (if what I'm experiencing is from gluten).

sandeehier Newbie
sandeehier
Posted

Maybe if the tests don't cost too much, or if your insurance will pay for them, you could get a blood test for hypothyroid AND to check for gliadin antibodies, to see if you've been exposed to hidden gluten.

Good luck and I hope you feel better!

loraleena Contributor
loraleena
Posted

Hi welcome. I suggest you get your thryoid checked also. Make sure they don't just do tsh(it is extremelyinaccurate) There is a whole panel that should include T3, T3 free, T4 free, thyroglobulin antibodies, and thyroperoxidase antibodies (these show hashimotos). Also you should get your adrenals tested as well. Also I would look into hypoglycemia. If you eat lots of carbs your blood sugar could be crashing and causing fatigue. Good luck.

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  • Posts

    • SusanJ
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      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
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