How Long Before Even Slightest Improvement

[Straymo]

I am still undiagnoised at this moment awaiting the 2nd biopsy to come back. All signs point to Celiac DH but nothing to confirm it yet. I figured that while I'm waiting for results, I would go gluten free to hopefully reap the benefits prior to dx.

I've been gluten free since Saturday (7 days) and not only is there zero improvement, it's still spreading. I know many have dealt with it longer but I think 2 months is just long enough.

I'm starting to get really frustrated and upset. My body is not my own anymore, it's on big itchy, ugly rash. I try to cover it up with clothing at work but it's summer in FL and I'd look stupid in a turtleneck. Besides that would cover my face would looks like I'm going through puberty worse than when I was a teenager.

So.....when will I even see a hint of an improvement? I go back to the dr. on Tuesday and if the results are negative again, I'm going to lose my mind. These are board certified, former Mayo drs. I don't want to be a medical mystery (which is what they called me last month).

[skyyblues]

I feel your "itch"!! I have been called a freak by more than one Dr. I have been gluten free for about 5 weeks now. My stomach problems got better within a couple of days. My skin is another issue.... I have noticed though that the blistering on my hands is not as bad as it was. My arms and legs have cleared up pretty much. It seems from what I have read it can take anywhere from 6 mos to a year and a half... I had blood tests come back negative, not sure what ones. I also had a edoscopy and colonoscopy which also came back negative. I tried to eat gluten for the scopes, but only made it 4 days and I broke out so bad that both my docs said to go back to gluten free. I have decided not to go through any more testing. My body has told me more than any of the upteen docs I have been to in the last 5 years. What I can tell you is to hang in there and give it a chance to heal. I personally refuse to take anymore steriods!! All they do is make me b%$@#y, want to eat all the time, and mask the symptoms, which I think come back worse!! Do you have any other symptoms? I have also noticed that when I get poisoned now my reactions are worse than they were before. It also seems that I am very sensitive now to gluten. So be careful!!

[lkonya]

  Straymo said:

I am still undiagnoised at this moment awaiting the 2nd biopsy to come back. All signs point to Celiac DH but nothing to confirm it yet. I figured that while I'm waiting for results, I would go gluten free to hopefully reap the benefits prior to dx.

I've been gluten free since Saturday (7 days) and not only is there zero improvement, it's still spreading. I know many have dealt with it longer but I think 2 months is just long enough.

I'm starting to get really frustrated and upset. My body is not my own anymore, it's on big itchy, ugly rash. I try to cover it up with clothing at work but it's summer in FL and I'd look stupid in a turtleneck. Besides that would cover my face would looks like I'm going through puberty worse than when I was a teenager.

So.....when will I even see a hint of an improvement? I go back to the dr. on Tuesday and if the results are negative again, I'm going to lose my mind. These are board certified, former Mayo drs. I don't want to be a medical mystery (which is what they called me last month).

Hello,

I have DH, Thyroid and Celiac Disease. I "HAD" a place on my back that was the size of a fifty cent piece and I had it for almost two years. I didn't think much about as my Mother had the same issue and hers were never cancerous. We did not know that she was celiac, but now that she is passed, I realize that was what it was. Anyways, the goods news is that once you go allergen free and add some iron (if your Dr tells you you are anemic) and add some B-complex vitamins "every" day, your skin will begin to clear up. I have been allergen free for over eight months now and my DH is about 80% cleared up and the crater on my back is about 98% gone. It will all get better, but it does take time. I did use some Calendula on my back on the big crater spot that was there and that really seemed to help. It's an immune system problem so until you get your immune system settled down, quiet, and relaxed, your DH will stay the same and it may get worse at first, but in time, it will relax and settle down. Just get on some good vitamins (allergen free kind) and stay on them faithfully each day. One other thing, stopping soda's with high fructose corn syrup and taking high fructose corn syrup out of the diet will be very beneficial in speeding up the process. Good luck

[MajorC]

  Straymo said:

I am still undiagnoised at this moment awaiting the 2nd biopsy to come back. All signs point to Celiac DH but nothing to confirm it yet. I figured that while I'm waiting for results, I would go gluten free to hopefully reap the benefits prior to dx.

I've been gluten free since Saturday (7 days) and not only is there zero improvement, it's still spreading. I know many have dealt with it longer but I think 2 months is just long enough.

I'm starting to get really frustrated and upset. My body is not my own anymore, it's on big itchy, ugly rash. I try to cover it up with clothing at work but it's summer in FL and I'd look stupid in a turtleneck. Besides that would cover my face would looks like I'm going through puberty worse than when I was a teenager.

So.....when will I even see a hint of an improvement? I go back to the dr. on Tuesday and if the results are negative again, I'm going to lose my mind. These are board certified, former Mayo drs. I don't want to be a medical mystery (which is what they called me last month).

Straymo

First, unfortunately you may never get your "official clinical" diagnosis. In my case I have never had a skin biopsy that came back definitive, but the pattern of blisters: hands, elbows, toes sometimes knees matching on both sides of my body made every dermatologist say "oh you have DH". Family Practice doctors are fairly worthless with this as I was initially diagnosed with everything up to and including scabies!

Second, even though people throw the word allergy around it would be more helpful if you break that habit. DH is your body's immune system attacking the gluten in your system. When you say allergy almost every brain defaults to hay fever and Benadryl. As opposed to having that type of allergic reaction that you could have taken a Benadryl to flush your system or dull your symptoms, you unfortunately cannot flush the gluten that's in your body out by any means other than time and you certainly don't want to dull your immune system.

Third, take a close look at your blisters. In my case all the blisters starter at the base layer (or maybe below?) the skin. So even when your body does run out of Gluten to attack you still have blister that are multiple layers of skin deep that need to heal. In my case I figured that it took about 4 days from consuming gluten to have a reaction and if that was the only consumption then the blisters would be gone in about 2-4 weeks depending on how bad the breakout was.

Fourth, there's a great deal of information on the site but since your new to this I would have to guess that no matter what you've read you probably are not gluten free. Reactions can vary from people needing to eat gluten enriched bread for an attack, to people that even have to avoid the caramel coloring in soda to prevent one.

Fifth, if you are diagnosed or your Dr. decides to treat you like you have DH; I would have to admit that drugs were an absolute requirement to avoid the pain as I transitioned to gluten free. Prednisone was awesome but it has a whole list of other horrible things that it does to your body. My Dr. tried to transition me to Dapsone but I had a sulfa reaction. We then tried Doxycycline which destroyed my stomach and finally settled Minocycline. Thought not as effective and still with side effects it was better than pain, constantly scratching myself or walking around feeling my exposed skin made me look like a leper.

I will add that for me creams/lotions, no matter what the stregth or chemical were absolutley worthless, as the pain always felt below the skin and they just made me have slimy hands.

Ok now that I've told you all that, I do want to share that it is possible to do it. I reached a point with meds first and then with diet that I could control it. I stopped being embarrassed about explaining why I eat what I ate. In some cases I just stopped explaining or just made others feel weird about why would they ask a grown man what he was eating? If you don't want to be rude or it