Traveling This Weekend...

[momxyz]

hi, I am a self diagnosed person .. with DH. I will spare you the details, suffice to say, I have been dealing with this "rash" for 10 months. Once I connected the dots to possible gluten intolerance as the root cause... a combinantion of eliminating gluten from my diet and religious application of hydrocortizone topical cream has calmed the storm. Mind you, I sitll have spots. But more of them are purple brown and fading, and fewer are red and itchy. I feel like I'm winning the battle! I have been attempting a gluten free diet for almost 3 weeks.

now, tomorrow, I head out of town for a family wedding. Due to finances, I can't stay at a hotel. I have a family member in the town who is graciously willing to have me stay with them, even tho its not all that convenient for them. I appreciate their hospitality and we do like each other so it will not be a hardship...

on the other hand they are not aware of my new found nutritional problems so I am in that dicey situation...They are great cooks and I am hoping that I can just pick "safe" options from what they cook...but am fearing that at some times that may not be an option.

so this is a problem but it may be an opportunity as well.

I will be trying to eat from gluten free options, but knowing my kin , I suspect there will be occasions where i either eat something wiht gluten or don't eat at all. not eating is not an option for me. I am very probably going to have to eat something with gluten this weekend.

My question to the group is , for those of you with DH, when you ingest gluten, how many days does it typically take for you to experience a response?

[jststric]

MY own experience is about a day and a half to two days. Many in here will say they can feel it immediately. I've read that many times. If I were you, I would be completely honest with said relative and let them know the issues you've been experiencing. Tell them NOT to change what they had planned at all just for you. I would go in with a roasted chicken and some fruit to help tide over in those times you may not have much choice. DON'T eat something just to be nice and undo what has taken you 3 weeks to accomplish!! This is your health. Just consider what may be going on INSIDE you that you CAN'T see or put topical creams on! Best wishes!! I don't envy you!

[angieInCA]

I start feeling tingling and itching within hours of ingesting gluten. THe blisters and rash show up 24 to 48 hours later.

I agree with jststric, Honesty is the best policy. Explain you new found dietary needs and tell them not to worry about creating a special environment just for you but to please not to be offended if you turn down any food offered. Pack some safe food to take with you or visit a store when you get there.

If they are great cooks they might surprise you and be very interested and will certainly be able to help you navigate through the selections they have prepared. Who knows you might teach them a thing or two. I have found thet when you involve people in helping to root out gluten in products they become quite intrigued by how much is used without our knowledge.

I have found that I have to take control of my diet. I don't hide it and I don't apologize for it. It is what it is. To be honest I have found that I have become a more assertive person since finding out I have Celiac and DH and the people around me respect me for it. Family member who used to push me a little now take everything I say at face value and don't push me to eat something I shouldn't.

[momxyz]

Well, I've got the answer to my own question!

Friday and Sunday I "fell off the wagon" - as I suspected, there were minimal gluten free options, and I was starving.

Well Saturday I had some minor itching, but it was so minor I felt it was my imagination. Sunday and Monday I began questioning my self diagnosis.

But in the wee hours of this morning I woke myself up with my scratching - the itching had returned with a vengeance. Fortunately I had not inflicted too much self damage and I applied hydrocortisone cream and covered the area with bandage. I was able to get a couple of more hours of sleep this way...

[momxyz]

I was not able to retrieve your advice before my trip...

I wish I had. But, on the other hand, at least now I have no doubt about what is causing the rash; this "gluten challenge" really confirmed for me my self diagnosis.

But, in the future, when I stay at my brother's house, I will be bringing gluten free food stuffs with me. I had packed a few of my homemade rice crackers in my back pack, but I ended up eating most of those in the airport between connections (as gluten free options there were limited to fruits and salads).

Interestingly enough.... my brother has been having problems with a rash on his leg. His doctor has had him using a prescription strength cream, and while its helping, its not curing. His rash does not look like mine but I am wondering. I didn't say anything, because his wife is a little skeptical about the connection of food to health problems.

The topic has come up in other family gatherings, because my niece (who was the bride the weekend) has problems with gluten, and her mom is a very firm believer in these connections. (She gave my sister in law a book called Nutritional Healing, which, I don't think went over well.)

My niece's wedding was lovely, and the dinner at the reception allowed for many gluten free options, which was nice. I think the day off from gluten between Friday and Sunday helped me...

And over the weekend, I found out that another brother of mine has diverticulitis. I found that very curious. Has anyone heard of connection between gluten intolerance and diverticulitis?

Next family gathering I won't shy away from explaining my own needs.... and may be so bold as to point out these other connections....

[ChemistMama]

Momxyz-

Since you've only been gluten-free for three weeks, I'd go to a dermatologist and at the least get bloodwork done. The U of Chicago Celiac Center has some good pages on the appropriate tests to get done. You may opt for a biopsy,too...just make sure they biopsy near an active site, and not directly on a blister.

Travelling can be a pain with celiac. Get some lock and lock boxes, they seal tightly and you can carry gluten-free snacks on the plane. Soyjoy bars became my safety net, they're gluten-free and you can buy them at the Walmart. If they're not helpful offering gluten-free things for you, or you don't feel comfortable eating them, tell them you need to go to the store to buy food. Smart Ones frozen dinners has about 6 dinners that are gluten-free (check the Heinz web site here:Open Original Shared Link.

Amy's frozen dinners are at some walmarts now, and they make several gluten-free dinners. Hormel also has a gluten-free list of instant take-along items here: Open Original Shared Link. My favorite quick meal is the Taste of Thai noodles ina box: pad thai and curry noodles, they're in the oriental section of the grocery list. THey're packed in yellow chinese take-out boxes, and they're great.

Good luck with your family, and get some sarna lotion, it works wonders! (the one with the pramoxamine).

[momxyz]

Thanks for the suggestions, ChemistMama.

For the last 3 now going on 4 weeks, I haven't made too much use of prepared products, other than a pizza mix and rice pasta. Since at this time of the year fresh produce is so wonderfully available, I've been eating lots of fruits and vegetables, along with meat, brown rice or potatoes.... I am glad to know that there are some gluten free Taste of Thai products. I love Thai food, but haven't eaten any takeout in the last month since I figured the sauces probably did have some gluten in there somewhere.... it will be great to have some pad thai and curry again!

a couple of questions... at the risk of sounding clueless... what are "lock and lock boxes"? Do you just mean tightly sealing plastic containers (like Ziplock brand)?

is sarna/pramoxamine an over the counter preparation?

I've been applying hydrocortisone three times a day and the itching is starting to subside, but you're not the only one who's suggested I see a dermatologist. (My husband said the same thing last night.) I'll have to go through my primary care first..... Is the bloodwork likely to still be positive after 3 1/2 weeks?

The experience this weekend has made me look ahead to the holidays. This might be a 2 turkey year! (One with grandma's stuffing, and one with whatever gluten free concoction I can figure out between now and then.)