I Dont Care About An Official Dx Anymore, I Know I Have It!

[crazyitch]

I am back after a few weeks hiatus from the forum and I just want to say screw the diagnosis!!  I am sticking with the gluten free diet now whether the dermatologist thinks 'gluten intolerance' is just a new fad disease that is cool to have, or not.  Yes that was what she said when I told her that I thought I was gluten intolerant.  She looked at my rash and said it was eczematic and prescribed a compound of cortisone cream mixed with some sort of aveeno moisturizer and an antihistamine that I had already been taking which did seem to lessen the itch at night so that I could sleep.  I told her that the rash had been over most of my body but that I had been doing a gluten free diet for a few weeks and it seemed to have cleared from my tummy and back.  She at that point said well lets put you on a hypoallergenic diet of just lamb rice and pears as well and told me to come back in two weeks.  So I went home and did her diet of lamb rice and pears and continued with the antihistamines.  It took 7 days for the cream prescription to be filled as it was a special compound, so I just followed her diet for  that first week. By the day that I actually got the cream from the pharmacy, my rash was looking markedly better and was not nearly as itchy. So I did the last week with the diet (I did add in some foods that I found on a list of hypoallergenic foods online) and the cream and then went for my next appointment with the derm.  She looked at my rash and said it looks a lot better and told me that the antihistamines and the cream were responsible for my improvement.  So like an idiot I went home and went back to eating my normal diet.  What a huge mistake!!!! my rash is awful again and it came back even worse than before....my legs and arms are a complete mess and once again so itchy that I am waking up in the night even when I take two (dosage is actually only one pill) antihistamine pills before bed.  My hips and butt are also starting to itch so I am nipping this in the bud.  I am back on the hypoallergenic diet in the hopes that it puts a stop to this.  I think the hypoallergenic diet worked so well because there is no real chance of getting cc'd.  Its all homemade foods like quinoa, yams, fresh veggies, rice, lamb, wild fish, and only organic meat that is raised on no grains, it has to be grass fed.  It is only day 3 of my being back on this diet so I haven't yet seen an improvement but I will keep you posted on my improvement.  I am shocked at how much worse the rash is that before, my legs look like they have been burned in a fire...all red and raised tissue with scabs...so horrible!!!

I would recommend the hypoallergenic diet to anyone who is struggling, it seems to have helped me once so I am hoping that it works again.......

 

Elaine

[BlessedMommy]

I hear your frustration!

 

When I first went to the dermatologist with my severe skin rash, he just said that it was eczema which was being made worse by pregnancy and prescribed me a steroid cream. No mention of other causes or looking at any other possibilities. I had bloodwork at the OB/GYN and it never showed much of anything.

 

I had to figure out on my own with an elimination diet that wheat caused the rash to flare up.

 

I wish you the best in your efforts to heal! 

[1desperateladysaved]

I had eczema for which the doctors had no explanation of the root of it.  Yes, the cream could clear it up, but it would come back with a vengeance!  I can't wait to hear about your progress with the diet, and I expect it will help you a lot.  You may want to keep track (in writing) of the changes you experience in your symptoms.  Do you know to identify allergens in your skin care and hair products too?  If I use anything besides my handmade soap, I still break out in a rash.

 

Best wishes for getting healthy and stopping the ITCH.

 

D.

[crazyitch]

Thank you Ruth for your support...I have a question, since you have been gluten free for 4 yrs has your rash cleared up?

 

Elaine

[CaliSparrow]

In my mind's eye, I see you going back to her, showing her the rash caused by gluten and then handing her a bill for her continuing education. .

I'm glad you figured it out!

[crazyitch]

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!!

 

E

[squirmingitch]

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!!

 

E

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! 

[Autumnsong3]

Have you gone to a doctor and blood tests done for Celiac? I'd highly recommend that since you've been eating gluten. That way you will  know for sure and won't have to try to reintroduce it back into your diet after being off of it for an extended amount of time. 

[BlessedMommy]

Thank you Ruth for your support...I have a question, since you have been gluten free for 4 yrs has your rash cleared up?

 

Elaine

 

My skin is much, much better than it used to be. Is it perfect? No and sometimes I still have flare ups (plus have contact dermatitis hand trouble that I attribute to too much contact with soap and water in the winter), but certainly nothing like what it used to be. Another symptom of my gluten intolerance was swelling. In another thread, I had a before gluten-free and after gluten-free picture, I'll have to paste them and show them to you.

[crazyitch]

Hello Squirm, I have just been so busy that I haven't had time to come back...weird how you make time when your itch is raging lol.  I went back to eating everything...gluten included after the derm said it was the cream and antihistamines that was improving the rash. I think I have been in a bit of denial that I could have this so I latched onto her words in the hopes that I didn't have it. I have been healthy all my life.  I rarely catch colds, don't think I have ever even had the flu and even when as an adult I got chicken pox I only had 4 or 5 little spots!  I haven't taken a sick day from work in over 20 yrs.  I work for myself but even on days when I am feeling less than 100% I still manage to work.  I was and still am  having a hard time getting my head around the idea that this can just come on out of the blue.  That being said I know that when I restricted my diet I improved a lot so I am going to put my energy into eating clean and accepting the idea that it is possible for even my 'superhero immune system' has its kryptonite Achilles heel: damn the DH!!!!

 

On another note, and I will try to make this as short as I can, I have been estranged from my biological mother since I was 10 yrs old.  She lives in England and my father brought my sis and I to Canada 40 ys ago (I am 50) I have had very limited contact with her over these 40 yrs.  The last time we spoke would have been over 3 yrs ago.  Anyway I play an online scrabble game on my phone and I have an opponent whom I play with on an ongoing basis, I had no idea who it was until the other day.  Turns out it is my mother, she came clean on the chat feature and told me who she was so we started chatting.  So during our chats I asked her if she has any food intolerances and I explained what is going on with me and she was shocked.  Turns out she is currently dealing with a rash that she got about a month and a half ago.  She hadn't been to the doctors yet thinking that it would just clear up on its own.  It is exactly like mine, she itches then she scratches like mad until she bleeds and the scab takes forever to heal.  She said she gets a red raised area too.  She has never had any issues with rashes or eczema nor with her intestines. Is it possible we have the same thing at the same time....mine is a few months older than hers but I think it is a very strange coincidence that she has it also...........and that she contacted me at this time............

 

The universe works in mysterious ways

 

E

[BlessedMommy]

Here is a before gluten-free picture, I was newly post partum with my first baby. This was not the worst of my rash, not by a long shot, it was much worse when I was pregnant. But you can see the obvious swelling, lines under my eyes, and general look of unwellness.

 

Open Original Shared Link

 

And here is a photo of me about 6 years later, and about 2 1/2 years into being gluten-free. I was feeling MUCH, MUCH better, as you can visibly tell!

 

Open Original Shared Link

[crazyitch]

I haven't had any blood work done for celiac, I had a hard enough time convincing my doc that I didn't have scabies!! He was convinced I had that lol. I am not sure if I even care about it at this point. If I can control this by myself with diet I will be a happy girl. I have been off the gluten for 3 days and even though that isn't long, I don't want to waste that small progress. Changing my diet is hard work for me so 3 days is huge. I love, love, love, bread, pasta, beer and did I mention beer :-)?? I don't want to give the idea that I drink beer 24/7 but my husband and I enjoy a pint socially a couple of days a week so this is hard for me. I have to stay the course now or I do the slippery slide back into gluten and we all know how sticky that is.....

If my restricted diet doesn't work this time then I am at a loss.

Hoping for the best....

E

[BlessedMommy]

It is so hard to work with doctors when they won't even order the tests that you need!

 

I understand the desperation of just itching constantly and wanting it to be over with.

[crazyitch]

Ruth I can totally see the difference, you really look much healthier in the second picture!  I am hoping for similar results: I am not swollen, in the face anyway, but my rash is bad.  I will keep you all posted as to my progress.  Take care and thanks so much for your support!!

[BlessedMommy]

I hope that it works great for you! KUP!

[notme]

Have you gone to a doctor and blood tests done for Celiac? I'd highly recommend that since you've been eating gluten. That way you will  know for sure and won't have to try to reintroduce it back into your diet after being off of it for an extended amount of time. 

the doctor already didn't do the test    that rash is HELL - they call dh "the suicide rash". 

[crazyitch]

I haven't been tested for celiac....my regular doctor has no clue and the dermatologist is convinced it is eczema (she keeps mentioning stress as the culprit for the eczema)....so frustrating!  I will definitely know for sure if I see improvement again after eating a clean diet.  I just have to stay strong around flour products....im a carb hound (not always the good carbs)

 

E

[BlessedMommy]

That is so frustrating! It's annoying when the chance to get a good diagnosis is blown away by medical professionals who won't take you seriously.

 

Could you call around and find a dermatology office that will do a DH biopsy for you? It doesn't sound like your current doctor is much help....

[squirmingitch]

Elaine, there are gluten free beers out there. It may take a good while for you to accoustum yourself to them  but they are there. They taste like beer to me. LOL! But I was never fond of beer & in fact avoided it as much as possible. Gee, I wonder why? It was because when I drank beer, that was when I would actually get GI issues. Tore my guts UP!!!!!! I always thought it was b/c of the barley --- come to find out it was! But I didn't know the half of it. Malted milk balls did the same to me so I didn't like them. Any time I ate or drank anything malted (barley) is when I would experience GI stuff. Things with wheat like bread did not do that to me. Perhaps it was just the overload combo of wheat & barley that triggered the reaction. 

I am not at all surprised your mom has a rash. I can't give you the link to it b/c of the computer issue so you'll just have to take my word for it but med texts document that ppl with dh tend to have children who have dh instead of normal celiac disease. It isn't a guarantee but the #'s are higher for a dher's children to present with dh rather than GI. My mom had it in her scalp. She always said it was nerves but would scratch her scalp raw & I felt the places so when I got it in my scalp, I thought it was nerves just like mom. Later on, mom got it on her elbows & couldn't leave them alone. I am positive mom had celiac disease presenting as dh. At one point late in life, she lived on Tums.

The timing of your mom though is surprising. Wow! Yes, the world works in mysterious ways.

As to carbs...... Glutino makes some fabulous stuff. The pretzels are amazing! They'll make that gluten-free beer taste better.  They make some dandy Table crackers too. We love them with ham & swiss cheese, mayo & mustard.  Here's a link to FritoLay products in Canada that are gluten free:

Open Original Shared Link

Pamela's makes great stuff too. I adore their pecan, chocolate chunk shortbread cookies.

And of course rice & potatoes are carb abundant. Bake a potato, them slice in half lengthwise, stick a knife in & cut up the inside, then stick pieces of butter & sharp cheddar cheese in & bake them @ 400 degrees for about 30 min or until toasty on top.

Since you were improving so much before going back to a regular diet, I hold much hope that this road will not be so long for you.

I don't think I need to remind you but you need to tell your kids about celiac disease & the symptoms including the GI version & they will also need to be on the look out for it in their children.