Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Newly Gluten-Free, Over-Sleeping
0

2 posts in this topic

Hey Everyone,

 

First, this forum is great :) Thanks for sharing all of your knowledge!

 

Second, I just started a gluten-free lifestyle (going on 3 weeks). Here are a list of symptoms that lead me to this change:

 

For the past two years:

Diahrrea (managed for 2 years with probiotic treatment. Never fully corrected, but managed).

Intense and painful gas.

bloating.

Brain fog.

Poor Performance on Balance Test.

Weak fingernails with pits (I was told this reflected poor absorbtion of nutrients).

 

For the past three months:

Migranes

More noticable brain fog.

Chronic Urticaria.

 

Once the Chronic Urticaria (hives) kicked in, and having seen 7 different doctors to no avail (they simply said "IBS" after I tested negative in a blood test and colonoscopy), I self-diagnosed some type of gluten intolerance (I notified my doctor before starting the diet) and began a 100% gluten-free diet. The Hives cleared up in 2 days, and I've taken 1 probiotic in 3 weeks and have had much more normal digestion than I ever had in the past 2 years (I had been taking 2 Probiotic Pearls a day for half a year, and before that 1 a day). I'm still learning which things to avoid (I've accidentally glutenated myself a couple of times...and Udi's products cause most of my symptoms to return), but on the whole my life is much improved on the diet.

One thing that I've noticed is that since starting the diet, I've needed a lot more sleep. It's fairly normal for me to sleep nearly 10 hours. One day I stayed home from work and slept almost 20 hours for that day (I was, however, on anti-histamines because the hives had returned thanks to a so-called "gluten-free" option at a local resturaunt).

So a few questions:

1) Does anyone have any tips on how to navigate going to the doctor? I've been pretty frustrated by their inability to put two and two together. Not to be offensive towards doctors, but I have seen 6 of them!

 

2) Has anyone else had this over-sleeping experience? I figure that my body is trying to heal itself and that's causing me to sleep so much. What are your thoughts?

 

 

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

Yes, healing makes you sleepy. Allergies and glutenings don't help. It will lessen in time.

Keep personal copies of all lab reports. Keep a diary of symptoms or put them on a calendar.

If docs go in circles start cutting. Be honest with them and tell them they aren't working for you. No need to be rude, but it benefits no one if you don't speak up. Perhaps an integrative practice is better, or an ND. Good docs are rare but if you find one keep him/her.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined