CeCe22

On 12/21/2022 at 3:30 PM, Katerific said:

I just figured something out.  Planter's and Fisher's Dry Roasted peanuts have a lot more ingredients than just peanuts.  Cocktail peanuts contain just peanuts and salt.  I have a gluten-free scanner on my phone and it said the Planter's and Fisher's Dry Roasted salted is gluten-free but the lightly salted dry roasted is not gluten-free.  I'm switching to cocktail peanuts.  The gluten-free scanner on my phone is really handy.

I love my scanner also. Thanks for your reply. 

Thank you. I kept looking it up but would get conflicting reports 

I am making potato soup and it has cream of celery soup in it. What can I sub for the celery soup?

What brand of salted peanuts are gluten free. I researched it but got conflicting answers. Thanks. Wanting to use in a recipe. 

On 12/11/2022 at 10:27 AM, Hopeful1950 said:

Your mention of 10 years jumped out at me…I recall reading somewhere (I wish I could provide a link or a cite, but can’t find it) that DH goes into remission in some people after 10 years or so.  Maybe you are one of these very lucky folks…

Enjoy your remission!!!!  I have always heard and read that even if you are in remission to stay on a gluten free diet. I have had since August short spurts of time when I go without DH symptoms. The last lasted about three weeks. I stayed on gluten-free diet during that time. Went out to eat recently and had small breakout but DH symptoms not lasting as long as they usually last. Once I realized that I was getting gluten by my dog and changed her food I am so much better!!!!!

On 10/15/2022 at 9:45 PM, CeCe22 said:

Can you get gluten from a dog?  My nutritionist has been working with me with my gluten-free diet and she says I am doing great with my food selections but I keep a rash all the time except when sick. I have been gluten-free since July 2021. Rash is worse at some times than others.  We eat at home most of the time. Eat out very little. I just started thinking about my maltipoo. Her food did have gluten so today I spent time at pet store looking for a grain free/gluten free food and treats for her. She loves sitting with me and of course licking. I do try to keep her from doing that, however, she is so fast. Went to my dr two days ago. She says my case is so different from other patients. She thinks I have something else as well as DH. She did a lot of blood work and all my numbers are coming down. This is so frustrating. Just had the thought about my dog today. 

After several months I am now doing so much better. Almost afraid to say it out loud!!!😂. I do think switching the food my dog was eating has definitely helped. I no longer have the rash all the time. I have also been eating at home or when we go somewhere I take my own dinner. It sure has been hard with the holiday events!  But would rather do without than have a terrible flare up. I have been trying to be gluten free now for a year and five months so maybe that is part of the reason for not as many outbreaks. I just want to tell anyone just beginning this journey with DH it takes a while and can really be frustrating and depressing. Hang in and it will get easier and better!  Also get you a good dermatologist and nutritionist. Merry Christmas to everyone. 

I asked a couple of weeks ago as to whether my dog could be part of what was going on with me having so many DH flare ups. Well after two weeks with my dog,Sadie, being on gluten free food and treats I have been so much better.  Still a few itchy bumps but nothing like I was having. Hopefully this has been some of my problem!  

I am not taking any supplements. I have cut back on iodine but maybe not enough. 

Can you get gluten from a dog?  My nutritionist has been working with me with my gluten-free diet and she says I am doing great with my food selections but I keep a rash all the time except when sick. I have been gluten-free since July 2021. Rash is worse at some times than others.  We eat at home most of the time. Eat out very little. I just started thinking about my maltipoo. Her food did have gluten so today I spent time at pet store looking for a grain free/gluten free food and treats for her. She loves sitting with me and of course licking. I do try to keep her from doing that, however, she is so fast. Went to my dr two days ago. She says my case is so different from other patients. She thinks I have something else as well as DH. She did a lot of blood work and all my numbers are coming down. This is so frustrating. Just had the thought about my dog today. 

I just always wash my hands really good when that happens. That is what my nutritionist told me to do. 

We have been eating at home. Very seldom do we eat out and then I am very careful. However when I broke out again we had been eating at home for weeks and I was eating same thing I ate while I was clear? V. 

Unfortunately it came back after 10 days. It sure was a nice relief!!!  I have had two other times in February 2022 and May 2022 that I was sick with bronchial infection and the rash cleared up during that time. However, both of those time the dr had given me a shot and predisone. With COVID they just told me to use Robitussin and Tylenol. 

I developed Covid over a week ago. Since that time my rash has completely disappeared. I wish it would not come back!  😃

4 minutes ago, Scott Adams said:

Apparently lentils are often contaminated with wheat as well. I still wonder if you're not getting contamination, but it could also be some other trigger.

I hope we can get to whatever it is soon

3 hours ago, Scott Adams said:

Do you include oats in your diet? If so, around 10% of celiacs also react to oat avenin in a similar way that they do to gliadin in wheat, rye and barley gluten.

I quit eating oats several months ago. I had read on here that it could be oats. 

I have been on strict gluten-free diet for almost six months and I still have rash with very few days of relief. We have changed cooking pans and utensils. My husband is pretty much on gluten-free diet with me. Recently I started seeing a doctor at a celiac center. She did new blood work and all my numbers have come down since my blood work in May. That is a good thing. She is sending me to another dermatologist for a second opinion to see if I have linear IgA dermatosis instead of DH. I go for that appointment in early February. Anxious to hear what results will be. 

On 11/23/2021 at 10:31 AM, Cbf said:

I’ve had that reaction, but it is from sugar for me

Yes been diagnosed with dermatitis Herpetiformis. When I eat gluten or get cross contaminated I break out with very itchy rash. 

3 hours ago, Scott Adams said:

This site is very helpful to find drug ingredients:

https://dailymed.nlm.nih.gov/dailymed/

If yours is the capsule it looks gluten-free:

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=90a6bfcf-faf9-21c0-e053-2995a90ad69f

• D&C YELLOW NO. 10 (UNII: 35SW5USQ3G)     
• GELATIN, UNSPECIFIED (UNII: 2G86QN327L)     
• FD&C BLUE NO. 1 (UNII: H3R47K3TBD)     
• STARCH, CORN (UNII: O8232NY3SJ)     
• MAGNESIUM STEARATE (UNII: 70097M6I30)     
• SHELLAC (UNII: 46N107B71O)     
• FD&C BLUE NO. 2 (UNII: L06K8R7DQK)     
• SILICON DIOXIDE (UNII: ETJ7Z6XBU4)     
• TITANIUM DIOXIDE (UNII: 15FIX9V2JP)     
• ALUMINUM OXIDE (UNII: LMI26O6933)     
• FD&C RED NO. 40 (UNII: WZB9127XOA)     
• FERROSOFERRIC OXIDE (UNII: XM0M87F357)     
• SODIUM LAURYL SULFATE (UNII: 368GB5141J)

Thank you. This will be so helpful. I have recently made an appointment with a dr at Celiac Clinic at Vanderbilt in Nashville. I am anxious to go and hope they can get me on a good path to deal with DH. As part  of their team they have a nutritionist that I can’t wait to meet with and see what I am doing wrong/right on this journey. 

I found some old posts on here in regards to the medication Nortriptyline but was wondering if anyone knew for sure if the medication is gluten-free. It does have starch but said made from corn maze????  I have been on 10mg of Nortriptyline for 30+ years for headaches. I am afraid to come off of it for I sure don’t want the headaches to come back. They were awful. Any help is appreciated. 

4 hours ago, ravenwoodglass said:

If you do have DH you do have celiac. Celiac is an autoimmune disorder not strictly a GI one. In some the antibodies attack the skin and even the nervous system long before GI symptoms show up as more than a 'normal' annoyance. (Jumping up and down waving vigorously as I was one of those people) It can take a very long time for the antibodies to leave the skin and it takes very little to reactivate them. Do reduce the amount of iodine in your diet as that can trigger a flare in some with DH. Make sure that your med is gluten free and if generic the pharmacist needs to check with any maker.

TY

Just now, Gmcd198 said:

Thanks for your response! I’m seeing my dermatologist in a few days. I’m hoping she has some solutions, being disfigured is horrible, I can’t even take my shirt off anymore 

Good luck to you. 

On 12/18/2018 at 8:56 AM, razzle5150 said:

is there any one else that has the rash and dont have celiac.. I was told by 2 drs you dont have celiac.. Please help , this rash is horrible

I have DH but do not have celiac. My blood work came back that I was celiac but I had a scope done and my biopsy was normal. I started the gluten free diet in July 2021 and I still break out but it is not as itchy as before. I have a few clear days from time to time and then I break out again. I am sticking to the diet very strictly (very rare eating out). My dermatologist has me on doxycline because I could not take dapsone. Not sure it is helping any!

On 9/17/2021 at 9:56 PM, knitty kitty said:

@FitnessMom,

Does your rash get worse when exposed to the sun?

Welcome to the forum! 

Heading to beach with family soon. Does DH get worse when exposed to sun?

3 hours ago, cristiana said:

Thanks so much.    It will be nice to know what's behind it all but I'm not looking forward to wearing a monitor.  Is it 24/7? 

Yes

8 hours ago, cristiana said:

No, but interestingly I'm pretty sure they kicked off after I'd been taking some sort of medicated lemon drink for flu/colds, which I've since learned can contribute.   They went away but have since come back without me drinking those lemon drinks.   Perhaps taking a particular medication can kick start that sort of issue, for it never to truly resolve.

Once I came off of my medication they went away. Cardiologist had me wear a monitor for several days but he said it was nothing to be concerned with. I would definitely have it checked out. Hope you are better soon.