I'd keep a food and activity diary. I've found viruses break me out, as well as starting increased t3 mess for me thyroid (along with a strenuous massage). In short - I changed things in my body and the rash was a protest.
Thanks for the input. I agree with yall, it is just too early for me to be eating out. I am not going to eat out again for a very very long time. It is hard because we are always on the go, but I am just going to have to find a way to make it work. This disease is really a difficult thing to deal with. Its discouraging because its SO hard and just knowing that it is permanent is frustrating. Oh well. I am committing today to not eat out for a very long time in order to give my body time to heal. Thanks for all your support! I have been dealing with feelings of depression lately because the reality of my diagnoses has set in. Knowing that I will never go out for pizza again, and that I will never be able to eat at family get togethers, and that I will never have my favorite deep fried, breaded buffalo wings again, and that I will never be able to eat anything that anyone else cooks for me ever again, etc etc ( the list goes on and on) Is so discouraging! Oh well. I am just going to take it one day at a time knowing that it is not a choice, it is something I MUST do in order to have a healthy life. I am glad that all of you can relate to what I am feeling
I just realized how much I just rambled haha. Oh well. I say all this to say that I am NOT eating out for at least 4-5 months so that my body can heal....Thanks for all your input!!
It can be difficult in the beginning. I ate out, conservatively....in the beginning. You CAN eat out, just not reliably. You could try to eat out at a "safer bet" place - a place you've heard from other local gluten-free'ers is reliable. I've never put fast food in the "reliable" category...well, maybe specific In n Outs and one Chipotle.
My point is that you can try it. Just don't read too much into it. And the more you try it, and "practice" screening gluten-free and asking questions at restaurants the better you'll get at it. There is a learning curve.
Thanks, everyone. That makes sense, pricklypear: I have half of a celiac gene. I need to brush up on my chemistry and biology...
I am 1/4 Irish. I'd be interested in that article, stanleymonkey, if you happen to come across the link.
Prometheus Labs, unfortunately, will not discuss results with patients and will only release the info to doctors. I hadn't even realized that my doctor ordered the genetic tests. I hope that the half-DQ2.5 gene plus symptoms will be enough to get the GI to do an endoscopy. I'm glad my daughter is ahead of me in the diagnostic process - it should help my doctor to take this seriously if I go in with documentation that a first-degree relative has celiac.
Remember, she can get more genes from Dad. My son has half a gene from Dad that I don't have...which leaves the question if hubs has a whole gene....
And I wouldn't do gene testing on your daughter yet - some docs will EXCLUDE celiac if the gene test isn't fully positive. So, it can work against her.
I don't know, other than a glutening. Many have reported a dh type rash after going gluten-free, then doing a challenge or getting glutened.
I'd look for sources of cc, or think back to your last glutening....
If you think it's dh, you may try a low iodine diet to see if it helps it go away. Most dh is iodine sensitive - and it sure contributes to mine worsening if it flares up. Try the thyca.org cookbook (online/free) for how to go low iodine.
There are other gluten related rashes, and other skin diseases are common in the autoimmune challenged.
It is like learning to walk again. I have let the house go just trying to learn in the past few weeks. I will not go into details on what has been going on with me. Except, I think I may have had this in the beginning of my going gluten-free last year. Right after a week of 2 birthdays and an anniversary, I had the flu, a 3 day flu, and then right afterwards I had red dots all over me head to toe. I looked at the picture in the first post, it looked like that. I did not panic at the time, because at the time I knew I had something that week I should not have had, and then started looking up rashes associated with gluten, found this and it looked just like mine. But I never put the flu with it. Was the flu part of it too? My husband will want to know this. We thought this reaction I just had was the worst one, but my temp spiked higher than it ever had with that flu, it was the worst and yet the shortest I had ever had. I had been trying to be gluten-free for about 6 weeks, after 2 birthdays, I gave in on our anniversary and enjoyed a night out, it was mostly healthy food, but there was dessert. The rash lasted for at least 4-5 weeks. We discussed my going to a dermatologist, but I did not want to take the only thing I saw that was prescribed for it, so I did not. I should have shouldn't I?
So my question is, is the flu part of it? I still get a few itchy red bumps here and there and worry is it coming back?
I have not had a positive test, all we know for certain is I should not consume Gluten in any way shape or form.
Since going gluten-free and figuring out iodine, I have had dh very few times (knock in wood). But one of my most consistent triggers is A VIRUS. That's actually how I know it was/is a virus and not allergies. I break out in dh.
Honestly, it is hard to tell. Benadryl makes her sleep, so there is that... We use the steroid (which we are stopping) for the eczema, and I think that helps the itch on both rashes.
There are two classes of antihistamines. Some people only respond to one. It's worthwhile to see if she does respond. Antihistamines can work in two ways - by addressing an allergy or by suppressing the immune system. They do help me if I'm in an autoimmune flare. They don't fix it, but they do help. It's a cheat, but a useful one. Use this chart to figure out which types she's tried.
She is willing to try it even after her DO told us both that "Going gluten-free when you don't have Celiac Disease can cause serious health issues." I have no idea what she was talking about but I tried not to roll my eyes. Now I just need to tear apart the kitchen and go through all her meds and lotions etc. She has a lot of prescriptions. If there any data base to check for gluten in prescription drugs?
I was thinking late last night about how important a forum like this is for us to be able to begin to make sense of what is happening to our bodies. The "symptoms" issue was what prompted this post.
Before finding this forum, there we are, all struggling along alone and wondering why no one else we know has constant headaches, bleeding noses, thin nails, tingling feet and nose, occasional blurry eyes, indigestion, dry skin, canker sores ... and of course we don't mention the fatty stools and the gut issues. Except maybe to our PCP/GPs ... and if they don't connect the dots we soldier on. We get tested unnecessarily for stomach ulcers, parasites, hepatitis, stress tests, etc. We begin to sound like hypochondriacs to anyone who is not afflicted by this condition so we mostly keep quiet about it ... for years until things get serious like the appearance of DH with all its misery and it obvious seriousness ... the suicidal itching, the agony, the profuse bleeding.
Even a diagnosis of osteoporosis and the tests that were done at that time didn't reveal my underlying condition and so I carried on poisoning myself for five more years. The last 15 months with DH was a real downward turn for me with my health and I really thought I was genetically fated to have a short life ... that's how unwell I felt. And this after living a healthy life ?? ... I felt like my body was cheating me.
To find out just a few short weeks ago that the "healthy" food I was eating was my poison was an emotional relief beyond words ... my body wasn't cheating me it was trying to get my attention ... and I didn't understand what it was trying to tell me!
Exactly. Your body was trying to get your attention.
I've cycled through so many "stages" of AI disease/celiac/thyroid it's ridiculous. Cycling is a symptom, apparently, and no one talks about it.
Well ladies and gents . . . the more I read today the more discouragement I feel. Food and Dapsone after 8 months has not cleared this horrific rash nor stopped new lesions, blisters, itching, stinging, etc.
I really feel good that Tinpins has found relief with diet alone. That is absolutely fantastic.
I will renew my search for an answer for my rash. It may be DH that is not responding to diet or Dapsone. It may be something else that I don't want to speak into my life but . . . I have to have relief.
I did go to the pool and I also hand a tanning booth session. The pool was okay and the sun didn't cause the rash to be worse. I used a tanning booth that was not to burn (? rays) and I didn't burn, seemed to dry my skin but none of the lesions have disappeared.
I have been showering, applying peroxide (yes it burns) and applying Bacitracin Zinc Ointment trying to fight the infection (just started this week). Taking Benedryl and my new dosage of Dapsone. I thought I felt relief but after the past 2 days. . .been terribly itchy and broke open many lesions on my side and buttocks. Blood just flows out of these lesions. I really feel I'm back to the first stages of my outbreak from February of 2012. I may post some photos when my phone/camera is fixed. Until then . . gluten-free and taking Dapsone. I will call my Oncologist and ask for testing this week.
Oh Lyn, I'm so sorry. Blood flowing out of sores sounds terrible. I had fluid coming out of mine, but never blood (though I did scratch them to the point of bleeding a few times).
I hope you get into the doctor soon, and get some help. I do know how it is to suffer with a rash of unknown origins for years...and how defeating it feels when you can't find relief.
I know you're fearing the worst, and I hope there's another explanation and a solution.
Well, I'm going to say some stuff that will probably be called wildly inappropriate, but here goes.
First, I think it's quite normal for your brother to expect you to participate in the wedding festivities, particularly the rehearsal dinner. Traditionally, it's a family and wedding party affair...and he (along with his bride and her family) could easily interpret it as an insult that you won't attend.
Second, I understand the logistics of driving across town to a place where you won't be eating.... As you stated, you can eat prior, after, or take some food and hope the restaurant allows you to eat it there. Personally, I'd eat before and stick some safe chips in my bag and feel out the restaurant to see if the salsas are safe.
Third, Celiacs can suffer from a "lack of invitation" quite easily. No one quite knows what to do with us and are pretty sure they can't feed us, so we are at high risk of not being invited to as many events. People tend to forget it's not just about food (we can handle our own food), it's about socialization, too.
Fourth, I completely understand the Jerry Springerish family dynamic...but I don't recommend using celiac disease as an excuse because it can turn into #3. What happens when you're more comfortable and everyone remembers the wedding and never invites you to events you may want to attend?
Fifth, if you are at that "completely exhausted I just can't deal" stage of recovery, find a way to communicate this - even if it falls on deaf ears. I suggest a private conversation with your brother and the bride.
I understand your fears, as newly gluten-free. Really. But I advise dealing with this particular situation differently.
For those asking, we used to live nearby each other and frequently hung out together, but she moved away right before we both were diagnosed, so I don't get to see her in person anymore. We just talk on facebook these days, where I see her food posts getting more out of control, and since she is so far away now there literally is nothing I can do except watch.
I suggest the political election season approach: hide her posts from your feed or choose "important ones", or whatever they call it.