Brand New And Feeling Completely Overwhelmed

[gfinchandler]

Hi All,

This is my first post here. I've just joined today, and am hoping to find support/guidance/information. I'm feeling really frustrated and overwhelmed the last few days.

My story in a nutshell:

My mom is a very severe celiac, but somehow I didn't know it was hereditary until I was talking to a naturopath about 6 months ago. I'd been going to the same naturopath for some time so she had created a pretty comprehensive picture of my health and asked me about my family. When we made the connection with my mom being a celiac, she immediately put me on a gluten-free diet.

Since then we've worked out the diagnosis (of course I'm a very sensitive celiac), but even with all the information my mom and my ND have, I keep thinking I'm completely gluten free but am still having symptoms, so I dig deeper and find something else. Today, for instance, I discovered that the soymilk I've been drinking (Whole Foods Plain) has vitamin E in it, which is apparently questionable because of source?--but the label on the box says Gluten Free, and I trust Whole Foods to be careful about those things. Right?

My most pressing issue right now is my skin. It's on fire. My scalp, arms, chest, sides, and back are itching like CRAZY and have been for days and I can't figure out what it is. It doesn't look like DH, at least not any pictures I've seen--it looks like mild acne, which is weird since I never had breakouts in my teens. This started on and off in my early thirties (I'm almost 37).

The other day my partner discovered an article about gluten in lipstick and did more research, then looked up every body product in the house and discovered that the face stuff I've been using is FULL of wheat (Meaningful Beauty. EVERY product but one is full of gluten according to the gal on the phone there) and my conditioner (Aveda), lotion (Bath and Body Works), hair styling products (too many to list here), and lip balms (aveeno, bath and body works) were full of wheat, oat and tocopherols.

So for 3 days I've been washing my skin and face with ivory soap and using baby oil for lotion, then using whole foods brand citrus shampoo (their website says it's gluten free and sulphate free)on my hair--and olive oil for my face (they were the only things in the house that were safe). My face is actually not inflamed for the first time in ten years (I might actually stick with ivory and olive oil), but my scalp, throat, chest, arms, back and sides are still itching and burning like crazy. I feel certain it's related to gluten (I have a similar but much more acute reaction to MSG so I'm really careful to avoid it)--I even looked up the laundry stuff we use (downy free & sensitive and purex free and clear, both of which claim to be gluten free). I use Tom's of Maine toothpaste, and I have been on a strictly gluten-free diet for about 4 months, though we keep discovering new, hidden things...

Help! What am I missing? If you have any ideas for me, I'm absolutely open to them.

Thanks.

[mushroom]

Hi All,

This is my first post here. I've just joined today, and am hoping to find support/guidance/information. I'm feeling really frustrated and overwhelmed the last few days.

My story in a nutshell:

My mom is a very severe celiac, but somehow I didn't know it was hereditary until I was talking to a naturopath about 6 months ago. I'd been going to the same naturopath for some time so she had created a pretty comprehensive picture of my health and asked me about my family. When we made the connection with my mom being a celiac, she immediately put me on a gluten-free diet.

Since then we've worked out the diagnosis (of course I'm a very sensitive celiac), but even with all the information my mom and my ND have, I keep thinking I'm completely gluten free but am still having symptoms, so I dig deeper and find something else. Today, for instance, I discovered that the soymilk I've been drinking (Whole Foods Plain) has vitamin E in it, which is apparently questionable because of source?--but the label on the box says Gluten Free, and I trust Whole Foods to be careful about those things. Right?

My most pressing issue right now is my skin. It's on fire. My scalp, arms, chest, sides, and back are itching like CRAZY and have been for days and I can't figure out what it is. It doesn't look like DH, at least not any pictures I've seen--it looks like mild acne, which is weird since I never had breakouts in my teens. This started on and off in my early thirties (I'm almost 37).

The other day my partner discovered an article about gluten in lipstick and did more research, then looked up every body product in the house and discovered that the face stuff I've been using is FULL of wheat (Meaningful Beauty. EVERY product but one is full of gluten according to the gal on the phone there) and my conditioner (Aveda), lotion (Bath and Body Works), hair styling products (too many to list here), and lip balms (aveeno, bath and body works) were full of wheat, oat and tocopherols.

So for 3 days I've been washing my skin and face with ivory soap and using baby oil for lotion, then using whole foods brand citrus shampoo (their website says it's gluten free and sulphate free)on my hair--and olive oil for my face (they were the only things in the house that were safe). My face is actually not inflamed for the first time in ten years (I might actually stick with ivory and olive oil), but my scalp, throat, chest, arms, back and sides are still itching and burning like crazy. I feel certain it's related to gluten (I have a similar but much more acute reaction to MSG so I'm really careful to avoid it)--I even looked up the laundry stuff we use (downy free & sensitive and purex free and clear, both of which claim to be gluten free). I use Tom's of Maine toothpaste, and I have been on a strictly gluten-free diet for about 4 months, though we keep discovering new, hidden things...

Help! What am I missing? If you have any ideas for me, I'm absolutely open to them.

Thanks.

I'm with you on the itching. It drives you crazy. I already had psoriasis when I went gluten free, but developed a bright red rash all over my chest and neck that itched intolerably. It came to pass in due course that I discovered it was caused by soy. Other things I am intolerant to that have caused me to itch are potatoes and citric acid. Sometimes it's just a rash, sometimes hives. So I would suspect that you have an additional food intolerance and I would start with eliminating soy since you seem to have substituted that in. Try hemp or almond milk, they are both delicious. Earth Balance makes a spread that is soy-free. But you will find soy is almost as hard to eliminate as gluten, it pops up everywhere. Good luck on getting to the bottom of your itching. If it's not soy you will have to try eliminating something else, probably something you have been eating more of lately.

[mamaw]

Hi & welcome

Your red itchy skin may be coming from other things besides celiac. It seems you may be expericing an allergic reaction to something that may be other than gluten. I too can not have MSG, or any artifical sweetners ( which can be in just about anything these day) gum for sure.

Many cannot use corn sweetner, soy is another . Diet soda?

I can not do fabric softerners whether they are gluten-free or not....I pass out when I smell Murphy's Oil Soap which is supposed to be all natural!

Do you have pets? Some react to the feed if it is not gluten-free.

I have found since being gluten-free for a long time I'm now more sensitive to many other things.

Laundry soap is another thing that can make one itch & get red.

I also cannot use bath lotions, or anything that smells like perfume, scented anything sets me off....

hth

mamaw

[gfinchandler]

Hi & welcome

Your red itchy skin may be coming from other things besides celiac. It seems you may be expericing an allergic reaction to something that may be other than gluten. I too can not have MSG, or any artifical sweetners ( which can be in just about anything these day) gum for sure.

Many cannot use corn sweetner, soy is another . Diet soda?

I can not do fabric softerners whether they are gluten-free or not....I pass out when I smell Murphy's Oil Soap which is supposed to be all natural!

Do you have pets? Some react to the feed if it is not gluten-free.

I have found since being gluten-free for a long time I'm now more sensitive to many other things.

Laundry soap is another thing that can make one itch & get red.

I also cannot use bath lotions, or anything that smells like perfume, scented anything sets me off....

hth

mamaw

I already avoid artificial sweeteners of any kind (they give me migraines) and I don't use anything scented since most everything (especially anything floral or powdery) gives me a headache or makes me nauseous, so I don't think it's that...

I wish I could just sort out if it's a food thing or a contact dermatitis thing. Is there any way to determine that clearly, or is it all trial and error? I'm finally getting medical benefits in another month or so, so I'm hoping I can go to an allergist and have those skin poke tests done since I'm pretty sure gluten's not the only culprit...

[gfinchandler]

Oh! And the pet food! You mean some celiacs react to handling their pets' food if the pet's food isn't gluten free? We have two dogs and we keep their food in bins, so I'm sure I'm breathing particles of it when I'm dishing up their food every day...I don't even know if their food has gluten in it and we always get rid of the bags, so I'll have to look it up--could I really be THAT sensitive?

[Ahorsesoul]

I suggest you try a different shampoo than your citrus shampoo for a week to see if there is any improvement.

[GFinDC]

Oh! And the pet food! You mean some celiacs react to handling their pets' food if the pet's food isn't gluten free? We have two dogs and we keep their food in bins, so I'm sure I'm breathing particles of it when I'm dishing up their food every day...I don't even know if their food has gluten in it and we always get rid of the bags, so I'll have to look it up--could I really be THAT sensitive?

I feed Muffin the cat-head Friskies Seafood sensations, definitely gluten filled. But I use an old tin can to get the food out of the bag, and I always wash my hands right after getting her food out.