I have another appointment booked for the middle of may, (she is on vacation for the month of april....go figure!!) so I am going to stick to the hypo diet now until she comes back. I have taken pics of my newly raging rash to show her just how her cream worked . I will tell her that I am now totally gluten free and advise her to open her mind. Not all DH takes the same form nor does it land in the same places on the body on every person. She had looked at my elbows and knees and stated that it probably wasn't DH because it was in the wrong places. After I see her I will try adding back in dairy and soy. I am actually a bit scared to eat a huge variety of foods right now, the rash has totally freaked me out. My husband cant believe how much worse it is, he is totally on the side of the hypo diet and thinks the derm should update her antiquated education!!
It's good to hear from you Elaine. You have been much in my thoughts & I was wondering how you were doing. I'm so sorry it has worked out like this. I wish it had been something else. Question: When you said that after the trial hypo allergenic diet & seeing the deem, you went back to your normal diet. Do you mean you ate gluten? Or do you mean that you ate gluten free but not hypo allergenic?
AMEN to telling her of her narrow mindedness!!! I, personally, would never succeed in keeping my cool & being all diplomatic with her but if you are versed in those methods & can do that with her, it would be better than blowing up at her (which I know I would do!). The old saying, you catch more flies with honey than with vinegar....... If you can keep your cool, you may be able to get it through her narrow brain even if she doesn't openly admit it to you & it just might make a difference when her next patient with possible dh walks through the door. MAYBE she will take a second look & consider the possibility. It is my great downfall that I am not able to practice that kind of diplomacy & I admire those who can.
I want to tell you just how much better I am!!!!!!! 2 yrs. & 4 months gluten-free now. I haven't had a lesion or itch in days!!!! DAYS!!!!!!! My legs & ankles haven't had dh in about a month or more. I sit sometimes & just bask in the glory of not having a single itch on my entire body!!!! For a long time, I thought I would never know that feeling again in my life. A feeling that before dh I just took for granted & never thought about but after the hell of dh, I can truly appreciate not itching anywhere. I am sure I will have the occasional itch here or there but I know that I will be free of this soon. I know to you, it seems like 2 years + is inconceivable but however long it takes for you, you will make it! And when that time comes, it is SOOOOOOOOOOOO sweet!
I am very hesitant to do the gluten challenge. We started one on ds2 last June, but had to quit within five days due to vomiting, rash and diarhhea. The thought of another scarring episode for dd, in addition to the gi pain... No, we'll skip it. If she wants to do one when she's older, we'll revisit the idea of a gluten challenge.
Restricting another thing (dairy) from her diet is just so frustrating. I guess I'm trying to abracadabra a way out of it by questioning the diagnostics. On the upside, I've requested a genetic test for dd after reading through threads. I'm learning. Yes, five years later, still learning.
I am so glad to hear you will not do the challenge! I can't even express HOW glad. Nothing in this world could make me go through a gluten challenge --- NOTHING! I truly would rather die first. I came close to killing myself with the dh --- no way, no how would I recommend a challenge to anyone who has dh. GottaSki & cyclinglady both were right in their responses to you & I agree with all they said.
I know cutting dairy is rough, real rough but it sounds like she's a tough girl. She'll make it. There are substitutes. ((((HUGS)))))
I agree with what everyone here says. I am a little different than them b/c I have the skin presentation of celiac disease & didn't have all the awful, extreme GI symptoms the others had --- instead I get a horrid blistering rash called dermatitis herpetiformis & that means I have celiac disease. But I still did have some GI symptoms like never ending indigestion, nausea, gerd, belching like a sailor, bloat so bad I thought my body would just end up exploding from my stomach being so unbelievably distended & tight. I also did have periods of "D" but that would only happen maybe every 2 weeks or so but the terrible pain in my gut when it happened made me want to scream. I had migraines for 25+ years. Docs wanted to put me on antidepressants but I refused. Yay me! I was dx'd with spinal stenosis, osteopenia, carpal tunnel. I was prescribed epidural injections for my neck & spine pain & the debilitating pain throughout my entire body that was unendurable & made my life torture. Parts of me would either swell up &/or get so screamingly painful that I could not stand even a kleenex tissue touching me. I can't tell you how many times I could not use my hands b/c they were incapable of movement & indeed, just the vibrations from me walking made them hurt so bad I have no words to describe the pain. That kind of stuff would travel around my entire body --- didn't matter where; it could be a knee, hips or just the forearm or calf. I have been strict gluten-free for 2 years & almost 2 months. I have not had an epidural injection since going gluten-free & I no longer have those symptoms that caused me to get them. I had fatigue & have so much more energy now. I don't have bloat, gerd, no periods of "D" or the cramps it caused in my gut, no more belching -- heck I don't even burp ladylike burps! LOL! I had the feeling of needles in my hands & feet but no more. One of my fingers would go numb, blue then white & hurt like hell when the finger got the least bit cool --- it hasn't done that in I don't know how long now. I have no depression, no rage, no dizziness, my mind is clear again, no brain fog & forgetting words like "fork".
I urge you to give the gluten-free diet a trial of 6 to 9 months. Please! And no cheating. Do it for yourself, do it for your children & grandchildren.
Big hugs to you sweetie! (((((HUGS)))))) If they did a celiac blood panel on you --- 60% of us with dh test false negative on the blood panel -- that's b/c the antibodies are in the skin (causing our dh - DUH!). And unless the skin biopsies were specifically looking for dh & NOT done right ON TOP OF a lesion then that's why they didn't know what it was. Read, read, read as many of these threads both on the dh forum & the other forums.
This will help you get started on being gluten free:
You'll probably always wonder. It's really hard to say. It could be & it could not be. It sounds like it very well might be when you describe it & how you ran out of the lecture & went for cold water & how you couldn't bear clothes on it plus the cracking noise when they burst --- I call it a popping sound but I could see it being described as a cracking noise. There can be many skin issues related to celiac. Bottom line is that you are gluten-free now & that's the answer to the whole shebang so just continue & be very vigilant about your diet or you might get that chance to find out it's dh & that's something you definitely do not want to do. And there's no point in trying to get a dx of it since you're now gluten-free b/c dh can't be biopsied after going gluten-free & it wouldn't matter anyway b/c you've already been dx'd celiac so you don't need any more than that. DH is not a separate disease; it is the skin manifestation of celiac disease.
Pardon my last post. I meant Terrific as a response to Blaze's saying he was going with Silk Almond milk -- no carrageenan.
Abby! Good for you!
Mendylou, I really feel for you @ 3yrs. ((((HUGS))))
Okay. Blaze, now I know you must be a southerner!!!!!! Blackeyed peas for New Years --- you just gotta be from the south or your wife is. I'm in Fl. but mom was from Bama.
I did low iodine, gluten-free, & low sal for 9 long months. It's a total bitch! No other way to put it. Let's see if I can remember my allowed foods for 9 interminable months:
Celery (still haven't wanted to get near the stuff since I don't HAVE to eat it now), deeply peeled potatoes, sweet potatoes, iceberg lettuce, chicken, beef, pork, egg whites, rice, saffron, cashew butter, instant decaf coffee, leeks, apples, green beans till they came out my ears, snow peas, sugar snap peas, cauliflower, zuchinni, yellow squash, white acre peas, black eyed peas, field peas, lemon, cashews, bananas. The end. That's it. That's all. Breakfast, lunch & dinner, 7 days a week, for nine months. Then we said screw the low sal thing & absolutely nothing happened that made our rash worse for eating sals. We were the same as if we had been low sal. But OH!!!!! we could eat SOOOOOOO many more things! It was as if an entire world opened up for us!!!!!! Food, glorious FOOD!!!!!
Blaze, is the Dapsone working for you? How much are you taking per day? And have you noticed a difference? Tell us please what is going on with your rash at this point & how that differs from when you first came on this board?
Another day of no itching for both hubs & I. I'm running my hands over my skin & it feels so soft & smooth & I haven't felt it like this for what seems like forever. Only my lower legs still have rough patches which are rapidly healing. After having itching somewhere on my body continually since 2010; to not itch is a bit odd feeling but it is exhilarating!!!!!!!!
Same here as Prickly only my problem with iodine lasted longer than Prickly's experience. I had to go low iodine for literally well over a year. I would keep testing it along the way & had to keep backing off of it. But since Sept., have been eating it to my heart's content & have no problems. I have not yet added back seafood or iodized salt but everything else is back on the table.
And I am very happy to say that 2 years & 1 month strict gluten-free; I have not itched in 4 or 5 days now & all my places are healing rapidly & no new ones have appeared. YAY!
Frankly I wouldn't touch barley grass with a 90 foot pole! I don't care what it says. Just how careful are they when they harvest it? Did any happen to go to seed or the beginnings of seed? Where was it grown? Somewhere that it had gone to seed in previous years or worse yet -- an old wheat field? What equipment is it harvested on? The same equipment as wheat or barley that has gone to seed? Nahhhh, I'll pass on that thank you very much. I think like Abby says ---- lots of fresh leafy greens.
Culturelle makes a gluten-free & dairy free capsule probiotic. Very good. If you're doing dairy then Greek yogurt.
Like Abbs says --- make sure all the supplements are sure fire gluten-free.
As to ACV, I'm wondering if the sulfites in it are affecting the rash. Reason I say that is b/c it seems when I drink wine (sulfites) my dh flares more. Not an ironclad conclusion yet but enough suspicion there for me to question it. I'll have to test the wine theory 3 or 4 more times before I'm sure. Today I don't feel like testing it. Might not tomorrow either. LOL! And then, we are all different so what happens to me may not happen to the next person. And I understand there are sulfite free wines out there if one really desires to drink wine.
Bleach baths? That's up to you. I'm with Abbs on that one --- Eeeek! But whatever floats your boat ya know.
There are people on this site who do alternative therapy. Lots of them. You ought to post a thread in the post dx forum asking about it.
Don't forget Vit C is good for your skin too & it's something you can't OD on so go nuts if you've a mind to.
Okay, now to your first question as to if moisturizing is a factor in the healing. NO. That's my short answer. This is really hard to wrap your head around & I think 1 reason is b/c we humans are so accoustomed to being able to take pills or treatments for just about everything that ails us. We are getting a cold, we take Vit C & zinc, we get allergies, we take antihistamines, we get aches, we use Ben Gay, we get flu & pneumonia vaccines & so on even with prescription drugs. We have developed a certain unconscious arrogance that we can control things, or have a certain amount of control over things. We simply find it impossible to accept that we have no control over this rash other than a strict gluten-free diet but we have zero control over the hour to hour, day to day, month to month presentation of this rash. We persist in thinking we can do something, anything, to heal it & make it go away. But the flat out truth is that this rash is beyond our control. We can stay off gluten & even go low iodine but that's where our control over this stuff ends. For well over a year, I thought I could control it in some way. My hubs still reverts back to thinking he can heal it somehow. If I hear him say these things one more time, I think I will scream!: "Maybe it needs the Caladryl & it will dry it up & then it will heal." or "Maybe it is too dry now & needs the vaseline to moisturize it. I may have burned it too much with the Caladryl & now need to moisturize & that will heal it". And there are many more he says. He knows he can't heal it but still has times when he can't accept the fact that nothing he does is going to heal the danged stuff until it's good & ready to heal! One thing is fact --- when a lesion or lesions decide to heal; they heal up so fast it can near make your head spin. It can look like total hell for weeks & then in 3 days your skin is amazingly healed. Jaw droppingly fast! This rash has a mind of it's own & nothing we do will stop it from going through it's cycle. It will break out & I guarantee it is not going to heal until it's damned good & ready to decide to heal no matter what we apply to it topically or orally. As long as we persist in trying to control it, we will make it worse by stressing about it. The sooner we accept the fact that there isn't a thing we can do; the lower our stress level goes & the better off we are. You can make yourself in-freakin-sane trying to figure out how to control this stuff & all you do is make yourself nuts.
The only thing we can do is whatever it is that makes it feel better at whatever given point in time or cycle of the rash.
Great big hugs ((((((((((((((HUGS))))))))))))))))))))))
Okay, breathe, just breathe. Your body is going through massive changes & it can be really wonky for (I hate to tell you this) months. You're probably going to go through gluten withdrawal & that's no fun at all --- been there, done that.
You're doing right though judging by what you've said with the dedicated pans etc.... Try bone broth & bananas, sweet potatoes. Keep a food log to see what doesn't like you. And you'll most likely soon get lots of these foods back. But you're going to have periods where foods just don't like you no matter what. I'm so sorry you're suffering so but I PROMISE it WILL get better --- it WILL!
My hubs had been having dh but he was sailing down the river of Denial. I knew what he had but he was not willing to admit it. Finally, he could ignore it no longer & had to admit dh was what it was. And for the first several weeks he only went gluten-free but kept the synthroid & iodine. His dh did improve some but well, dh is dh & makes you insane & so that was when he decided to withdraw iodine.
The signs were there for years about celiac but at that time we were not astute enough to pick up on them. We didn't even know what celiac was. He would have D for days followed by C for weeks, off & on it went with periods of "normal" (a relative word) in between. He had rashes on his legs. What brought it all to a head & exposed it was a crushingly, tremendous amount of stress along with cancer for a number of years. Then the rash became well defined as dh & presented on his feet, ankles, calves, thighs, buttocks, hands, fingers & arms with some mild ones on his back.
We already knew I had dh & knew how difficult it is to get an official dx. We discussed, at length, whether he wanted to try to get an official dx (he was gluten light already b/c of me) before going gluten-free. I called all the derms within any reasonable distance & they had no clue about dh & doing a biopsy for it. Since the blood panel for celiac turns up false neg. 60% of the time with dh the decision was made to forego an official dx & go gluten-free. We know what it is. And we don't need anyone's permission to go gluten-free. He had also seen how I was suffering (having it way worse than him) & wanted no part of dh worse than he was already dealing with. Neither of us have had any trouble staying on the gluten-free diet. It's gluten that scares us, not gluten-free.