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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Contamination=No Energy
0

9 posts in this topic

Hi everyone, writing on behalf of my wife again, who doesn't have time to visit this forum. Before I start, I've found a lot of very helpful info and support on this forum, thank you to everyone who contributes.

My wife was diagnosed a few years ago. She has DH from Celiac. She's also hypothyroid. ONce she starts getting the rash, it's a red flag, she's been contaminated. So we are keeping a diary, she is eating nothing but the bare basics(fruit, veggies, yogurt mostly). She's been flaring up for about 4 days now, we still haven't figured out what's getting her.

My specific question is this: Do you experience a complete absence of energy when contaminated? We figure she's not getting any nutrients from food, and possibly not absorbing her thyroid medication. She used to take adderall, but has recently found it's next to impossible to find adderall that she knows is gluten free. She's really having a tough time, can't keep her eyes open at work.

Has anyone else experienced this? Are we assuming the right reason that she's so tired? And is there ANYTHING that can be done? She cant even drink coffee because it makes her joints ache. Really at a loss here and would appreciate any thoughts you have.

For all of you with this disease, I feel for you. Experiencing this with her has been a nightmare.

1

Share this post


Link to post
Share on other sites


I've heard that people with DH can also have issues with iodine. I know of at least one user that does.

0

Share this post


Link to post
Share on other sites

I have DH from celiac and it is true that iodine can worsen it but I always get DH after I have been glutened and I am very tired with it. Sometimes I run a low grade fever with it too. Sometimes you just don't know what got you. I agree that celiac is a nightmare. There isn't much that she can do but wait it out, drink water to flush her system..not healthy but Dr. Pepper which is gluten free has a lot of caffeine. It may help keep her awake at work since she can't have coffee.

I feel for her, I go through the same thing.

0

Share this post


Link to post
Share on other sites

so question for you Gluten-Free: How long do your flareups last? Do you go through an extended period when they get worse and then better? She's been getting worse all week, and she's barely eating anything right now so we're not sure if that means that something else is contaminating her that she doesn't know about. She washes her hands before every meal.

0

Share this post


Link to post
Share on other sites

My flare ups can last weeks with dh. In fact my current one has been going since Christmas Eve. Mine do get better and get worse. It also moves. Starts on my back then goes to my chest where it currently is. Sometimes I get it on my scalp, knees and elbows. It is also worse at night for some reason.

0

Share this post


Link to post
Share on other sites

. "My specific question is this: Do you experience a complete absence of energy when contaminated? We figure she's not getting any nutrients from food, and possibly not absorbing her thyroid medication. She used to take adderall, but has recently found it's next to impossible to find adderall that she knows is gluten free. She's really having a tough time, can't keep her eyes open at work."

I so feel for you both. I hope that your wife will feel better as you continue to walk through this thing.

I always thought there were times when it took more energy to cook my supper than I got out of it I can agree with the experience that you are talking about. My husband and I have had times when we feel I was not absorbing nutrients from the food I took in. It was only recently I found out about villi damage. I feel that could be the explanation..

Did I experience the feeling of a complete lack of energy? Yes, at times I didn't want to hold myself up, bend over to retrieve a dropped object, or cross the room.. The list goes on and on. It is so overwhelming. I had my refrigerator on stilts and constantly determined how to save myself strain or hassle. Yet, I would sometimes fall asleep between giving words on a homeschool spelling test. It is especially hard to stay awake when sitting still. Motion helps me to stay more alert. When it is a temperary thing, one can perhaps plan for more rest, and cancel engagements. But most people have some obligations which they must do.

Stay on the diet.

Try to get optimal nutrition

Watch out for other intolerances.

Get sunshine.

Get excercise ( perhaps only mild in the fatigued state)

Get rest (I hope it will be refreshing soon)

I say these things, because my fog has cleared and stayed away for a while. I hope you will be in that spot soon. It all gets pretty complicated and sometimes you need to cover all the bases to experience stable improvement. It also takes time. I sure hope you find a cause to the recent struggle.

Diana

0

Share this post


Link to post
Share on other sites

thank you, I know it's a sensitive subject, I really appreciate your sharing with me.

0

Share this post


Link to post
Share on other sites

Diana, thank you. My wife's a workaholic, and has recently come to the conclusion that she can't continue working at the pace she has been. The frustrating thing is she's been sleeping like a baby all week but still doesn't have the energy. We definitely think the villi damage is what causes this. She was nearly suicidal before she got diagnosed because she couldn't stay up. And I'm GUESSING that she may not fully absorb her thyroid medication, which she can't even function without(she actually just found out that synthroid, a drug she's taken her whole life, is no longer gluten free!). Last week she was on vacation, no rash, lots of energy. This week she gets home, flareup happens, gets worse, today she can barely function. Frustrating

0

Share this post


Link to post
Share on other sites

What i do when i've got no energy (not nessisairly due to CC, but as a college student), if i have the time, i will try to just sleep. Bad things happen when i try to get something done when i'm like that.

1

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
      102,702
    • Total Posts
      914,493
  • Topics

  • Posts

    • cadbury eggs?
      According to last year's Coeliac UK Food and Drink Directory they both are safe foods for us - I haven't got this year's though.   I do react  if I am glutened but have never had any problem with Creme Eggs - and  I bought some just after Christmas.  If you are anywhere else in the world maybe they change the ingredients but I would say you are fine in the UK..     
    • Glucose Tablets
      According to RelioOn, they do offer Gluten free glucose tablets website info   Lar
    • Do this, scientists! (experiment to confirm/deny the existence of "leaky gut")
      Good idea! Add also the lactulose - mannitol test, to confirm they are/are not experiencing leakyness in the gut, then correlate the results with the symptoms (obviously digestive symptoms would have to be excluded, because diarrhea and bloating will probably be present anyway, due to having damaged intestines). You see, ironically it would be "gluten-free challenge", because possibly systemic symptoms ("leaky gut syndrome")  and GI symptoms start after going IV fluids -> gluten-free (instead of "gluten challenge", which would be gluten-free -> gluten).
             
    • "Pre-Celiac" & scared
      PPIs should not affect your digestion of gluten one way or another. Many folks with celiac disease may have villous damage without obvious symptoms. Others eventually get symptoms after the disease is "activated," but exactly how or why this happens is not yet clearly understood. Biopsies are generally done after someone has symptoms, and likely already has villous damage, so I would imagine your doctor must be necessarily a bit vague about whether you might have "inactive" or "active" celiac disease. The gold standard is to get a biopsy while still eating gluten, and then another after being on a gluten-free diet for some time, to assess whether you heal without gluten in your system. Positive genes and blood work, AND villous atrophy would seem like fairly strong evidence, but that's up to your doctor to determine. If you feel comfortable sharing your test results on the forum, some folks here can give you their two cents. But listen to your doctor! Glutenease might help your digestion, but if you have an autoimmune reaction to gluten, it won't prevent the possible damage that comes with gluten mistakes. Research on l-glutamine is somewhat supportive for healing, but it's not a panacea.  You will read about various levels of sensitivity and prudence here and elsewhere. Eventually you'll come up with a plan that you consider is "safe," but hopefully will still let you get out in the world. Read up on gluten-free groceries and how to deal with restaurants safely, and you ought to be able to find a happy "middle-path" between prudence and paranoia. I'm one of the fairly sensitive/paranoid types at this point in my life. I personally don't worry too much about possibly breathing in gluten, but on the other hand I wouldn't eat anything that's been out where flour is in the air. Nor would I use a shared toaster or fryer. Again, it's important that you form a lifestyle approach that is informed about the risks but still a good life! Most importantly, work with your medical team to determine if you in fact have celiac disease.
    • Second Panel has come back...advice?
      We are utilizing the "our kitchen is completely gluten free" and DEFINITELY checking every label every time methods. SO glad to hear my DGP should drop!!!! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,739
    • Most Online
      1,763

    Newest Member
    larnotlars
    Joined