In 2 months I will have been strict gluten free for 3 years. I have dermatitis herpetiformis, the skin presentation of celiac disease (for those of you who don't know me).
I have good news to report. I am 5'1" and celiac disease had me down to 93 (at times 90) pounds. After going gluten free I would weigh myself & get depressed that I was not gaining weight. This went on for literally years. I did know not to expect much the first year so I wasn't that concerned & it didn't bum me out too much during that first year. By the end of year 2 though, it was getting pretty depressing every time I stepped on the scale & I hadn't gained anything. I got tired of seeing the same thing every time I stepped on the scale so I just quit weighing myself. Just about the last month or two, I noticed my jeans felt a bit tighter than they had been. I screwed up my courage the other day & stepped on the scale. 103. I thought it was an apparition. I Have weighed myself every day for 4 days & it always turns up 103! It's REAL!!!!!! FINALLY, FINALLY!!!!!!!
Ha,ha,ha,ha,ha! If this keeps up, I'm going to have to get a new wardrobe because of weight gain for the very first time in my life (I'm 57)!
Also, my bp had been steadily inching up in the years before I found out I have celiac disease. Well folks, my blood pressure is now back to so normal there probably aren't many people in the world who have such normal bp.
I've told you the things that can be measured. The other things like fatigue & gas, bloat, migraines, depression, etc., etc., etc...... have all resolved.
I do still have the rash. It is a billion times improved but I still get itchies here & there; rarely ever blisters any more. This is a humongous improvement. Those who know me, know what I'm talking about. I had the rash bad. It's just going to be a long time for me before I'm completely free of any vestige of the rash but I can certainly live with the state of it now.
I have been reading in this forum thread after thread where you "newbies" are chomping at the bit for permanent improvement. I wanted to post this to let you know it really & truly WILL happen for you but it is not something that happens in mere months, nor in 6 months, nor in a year necessarily but it WILL happen. Some take longer than others. Just stay the course and know that one day it will be YOUR day to write a post like this.
That's the problem with Dapsone. You take the pill, you have no rash, therefore you don't have a clue when you're getting a little cross contamination but the antibodies are still getting deposited under your skin. Obviously this is what has been happening with you as you say you've had a few attacks while on the Dapsone. Your Dapsone dosage wasn't enough to override the gluten you were getting. I would think the iodine should not make a difference while you're on Dapsone. BTW, while I'm thinking about it, potatoes are fine -- it's the skins that contain the iodine so peel them deeply & you can eat potatoes.
And while you were relying on the Dapsone to take care of the rash; the villi in your small intestine were being damaged as well as all the other nasty things celiac does to us. You've been risking cancer, neurological damage, upping the risk of other auto-immune disorders, thyroid disease & a host of other problems. At the very least, your doc should run a thyroid panel & check your vitamin levels and your iron.
I have never read a medical text that says Dapsone should be taken for more than 2 years for dh. It's only supposed to help you during the time the antibodies are getting out of your skin. it's not supposed to be a lifelong drug for dh control. Has your doc been running tests to make sure the Dapsone is not doing other bad things to you? You really are supposed to be carefully monitored while taking Dapsone.
I have never read that you can build a tolerance to Dapsone. I think what's happening (I'd bet cash money on it) is exactly what I stated in my first paragraph. You may have never been totally gluten free but instead getting cc'd all along.
As to the fluoride triggering an attack --- nope, never heard of that & I think someone doesn't know what they are talking about if they are saying this. If you read that in a medical text or some bonafied study then I would greatly appreciate a link to that.
As much as I hate to say it, at this point, you might need to have your Dapsone dosage upped to control the rash. Or you can go cold turkey & ditch the Dapsone right now & suffer the consequences. I'm really sorry you're going through this & I'm really sorry I have to say this but you know you have done this to yourself. It may take years for the antibodies to get out of your skin & until then, the rash can wax & wane even if you're being strict gluten free.
You should read the Newbie 101 & make sure you have all the rules down & aren't getting cross contaminated. Here's a link:
You need to be brutally honest with your doctor & let him/her now that you've been cheating on the diet & have likely been getting small amounts of gluten all along for the past 14 years that you've been on Dapsone.
You can try going low iodine for 2 weeks & see if it helps you. Here's a link to the low iodine diet ( you of course wouldn't eat the gluten parts of it). It won't hurt you to go low iodine for 2 weeks.
Please document your rash in photos, print them out & take them to the derm @ your appt. The rash may not look like your photos or be flaring when you see the derm. You can't rely on just telling the doc what it looked like, you need to show them!
Do NOT get a biopsy if you have taken oral steroids or used topical steroids in the past 2 months.
DO NOT go gluten free or even gluten light until AFTER the biopsy has been performed.
Kopka, as to your question on delay time....... as I understand it from your previous posts, as yet you have not gone 100% gluten free. I believe you said 70% and then 80% for the last 6 months & each time, when you go back to eating 100% gluten, it's 3 or 4 weeks before the rash appears again. I'm not being snotty here but it's hard to put this into words that will not sound snarky so please don't misinterpret what I'm about to say. You can not say that the rash appears again after 3 or 4 weeks b/c you HAVE NOT as yet, been 100% gluten free. You could only say that IF you had been gluten free for a length of time. What it seems to me that is happening with you is that you may very well be celiac & began with the GI issues. What I have garnered from what has happened to *most* ppl in those cases where they begin as GI issue celiacs & then over time, progress into the rash (for those who are prone to get dh). Remember, the rash can come & go at will ANYTIME, EVEN while eating gluten. I would be worried that if you continue to eat gluten, you will, one day, have the mother of all break outs & then it will NOT go away quickly or easily. You need to get a dh biopsy but only after you have been off steroids (oral or topical) & eating a FULL gluten diet for 2 months.
No, I don't have the links for you re: topical steroids & the rash & biopsy. My old computer died & I don't have all those links anymore. They are out there. If you wan them you will just have to hunt for them like I did.
If you've been doing any reading on here, you know that it's the very DEVIL getting a dh dx. Bad enough getting a celiac dx when you have gut issues but when you cross over to the dh rash; it's whole new ball game & it's the 9th inning, you're down by 1 & the bases are loaded & you have 2 strikes.
Well Rusty, if you have been reading on here then you know that dh can come & go as it pleases & that means ON gluten or OFF gluten. If you have dh (& you never mentioned anything about itching) then the flare you had after adding the almonds, honey & spinach may not have been related to those foods at all. It could have been & then again it could not have been. That's what's the real bitch with dh is ~~~ trying to figure out what you're reacting to IF you're reacting to anything at all. In the beginning, I thought I was reacting to salicylates also but I found it was just coincidence that I began healing when I removed salicylates. I also believe I probably didn't need to be low iodine as long as I was but again, dh will make you nuts out of your ever loving mind until you imagine you are reacting to everything. A food journal can be of some help but again, with dh & the way it flares for no earthly reason; a food journal doesn't necessarily give you the answer & can in fact, cause you to remove foods you don't need to remove. The iodine is telling though. I tested my iodine reactions repeatedly & every time I added it, the rash flared, so it wasn't a fluke & I was indeed reacting to iodine which further cements the dh dx.
How long have you been on the GAPS diet? I would suggest adding one food per week & only one. Then add another for a week. And if you get a flare during these times, try to wait it out & see if you improve even though you're eating that food. That is going to be a torturous, long process. OR you can stop limiting your diet of sals & GAPS & just limit iodine for a while longer & then just eat & wait it out. DH can take years to get out of your skin. Ask me, I'm proof! I am now 2.5 years pristine gluten free & though I am 56,000% better; I still get places. They do not continually itch 24/7 & they subside in 1/2 day to 3 days & there are times when I go 4 days without 1 single itch. But it has been one hell of a long haul for me. The key is if you are sure & then you must be so dedicated that you stop listening to those little niggling voices that cause you to doubt literally every single thing you put in your mouth. Been there, done that! I assure that every tiny item I eat is gluten free beyond a shadow if a doubt. Beyond that, I EAT!!!!!! The only thing not in my diet yet is seafood. I'm not a huge fan of it anyway so it's no biggie to me. I could go for a little tuna fish or some salmon once in a while & I do dig lobster but other than that ~~~~ meh, I can do without it.
BTW, I had heart palpitations or rapid heart beat & that whole dizzy thing going on & while not high, my bp was borderline high where they were warning me I better get it down or go on meds, which was really weird for me. Gluten free fixed all that. Now they take my bp & it's back like it used to be ~~~ they remark on how chilled out I am @ age 57!
You are a 35 yr. old. You need nourishment more than chicken, broth & bananas. You can't stay on that for an extended period without doing some other form of damage to your body. Your body NEEDS nourishment to heal.
I think maybe the most important thing I could say to you is that this is a mental game you're playing. DH is the world champion at making you doubt & will take you down in a heartbeat if you aren't constantly on alert for it's mind benders. It will wiggle & worm it's way into your mind when you least expect it. Don't let it win. Do not let it make you insane & afraid to eat good nourishing food.
I will also say that eating out is playing Russian roulette. And that includes eating at friends & family. They do not know all the rules & unless & until they do then you put yourself at risk. BE STRONG. Take your own food wherever you go. Do not take any chances with this. This is how you will defeat dh. You defeat it by not risking any cross contamination & thereby being sure in your mind that you are not reacting to gluten contamination.
Awwww hon, it's hard to be a parent. I have to hand you credit. Even harder being a parent when your child has an illness.
I've been thinking.......
What I think I would REALLY do? Keep him on gluten & start looking for a new derm right away. See if you can't get him in before you have to go back to the one you saw yesterday. Hedge your bets. I have to say the derm yesterday doesn't really seem to know his stuff. My gosh! I can't believe that statement about it just being a mild case. And if you take him off gluten then a biopsy can't be done. Where is this doc coming from??????
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)))))