Contamination=No Energy

[notkuroda]

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.

[shadowicewolf]

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

[GFreeMO]

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.

[notkuroda]

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.

[GFreeMO]

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.

[1desperateladysaved]

. "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

[notkuroda]

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

[notkuroda]

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

[shadowicewolf]

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.