AzizaRivers

Thank you! I've been CRAVING good soft pretzels like nuts for weeks...brought on by my boyfriend who just had to have that Auntie Anne's pretzel. Now if I can just get my hands on some potato flour...

I know not everyone is sensitive enough to have to worry about this, but I'm wondering how reactions typically go for those of you who do.

To start with, when I eat gluten, my reactions are pretty much all GI-related. I had no DH or neuro symptoms or anything. Now, for the past two weeks or so I've all of a sudden been itchy all over. The only visible indication of this was a patch of hives behind each ear. They didn't spread. But I found myself having trouble falling asleep because I kept having itchy spots all over my body, especially my scalp. I've also been breaking out with acne on my back, with I haven't had a problem with since my early teens. It's not really itchy except on dry spots, so I doubt it's anything but acne.

I was in the shower last night and decided on a whim to check the ingredients of the new shampoo bottle I've been using for oh, say, about two weeks. And what do you know? Hydrolyzed wheat protein right up near the top. And I thought "Hmm, I wonder if that's why..." and decided not to wash my hair this time.

I didn't think I was that sensitive, but the pieces fit together so perfectly. So I'm just wondering if my symptoms are plausibly a reaction to gluten in my shampoo. On the other hand...aren't our reactions to non-food items usually a result of it somehow getting in our mouths? Thoughts?

A few weeks ago I sat through an entire dinner at the crowded hour of my college's dining hall, and I didn't need my inhaler or feel like I was going to pass out! So I guess my claustrophobia is somewhat gluten-related.

I also found my KP to be far less severe...it's nearly gone entirely.

I used to have this shaking thing. My whole body would tremble like crazy under any sort of stress. The good kind included...and no matter how mild, if there was any kind of emotional response necessary, I would start looking as if I were about to go into convulsions. I knew that was a problem but I never thought it was related to my other problems until it disappeared along with them when I went gluten-free.

I've also found my indoor allergies to be much more manageable.

Tapioca flour and tapioca starch are the same, just different names (note that this is not necessarily the case with other flour/starches, sometimes there is a difference).

You said you were open to other recipes...try this one. It's my favorite. It's from Gluten Free Goddess. Karina's recipes are amazing.Open Original Shared Link

Try using 1 teaspoon of xanthan gum in place of the gelatin. I don't know if you haven xanthan gum yet...if you plan on doing a lot of baking rather than buying already-made things, you'll want some xanthan gum. It will cost $10-14 for a bag of it, but that single bag will last you a long, long time.

I would definitely go with what the first poster said about going with who foods for awhile. I don't recommend my own suggestion until you've got your glutenings under control, but for when you do, about the foods cravings...there really are some decent alternatives. I have found a gluten-free way to either buy or make (usually make, from scratch) almost every gluten food I miss.

Good recipes are out there. If you need help finding something that will satisfy your cravings without making you sick, any of us are willing to help!

Well, it depends on what you mean by "confirm." You have a few options from here:

1. Request a referral for a biopsy. If your intestines are damaged, you need to go gluten-free.

2. Try going gluten-free and see what happens. If you get a biopsy that turns up negative, still give the diet a try and see if it clears up your symptoms. There are plenty of people on this forum who didn't test positive on both the blood and biopsy (in fact, there are some who were negative on both but still healed up on the diet!). If you don't get the biopsy and the diet works for you, stick with it.

Hi Janet! Welcome to the journey.

As for reaction time, this varies greatly. Some people will feel sick pretty much immediately, others react within hours, and some days. For me, I will start to feel "off" a few hours after eating something bad, and I will wake up sick the next morning. That's with CC or small amounts. I haven't had a major glutening since I went gluten-free a few months ago so I'm not sure what that would be like. So basically, everyone is different.

For the medications, you can try this if the pharmacist says they can't help you: when you're filling a prescription, ask what the current supplier is and the name of the generic they are currently using. Then do your research on that, call the supplier if necessary, and then go to actually fill it once you know if it is safe. For me, none of my medications have generics out so I always know they're okay. For over the counter stuff I always get the name-brand (assuming I know that's safe). I know there are ways to check the generics but it's too complicated for me since they can always be changing ingredients. You often will have to check name brands too because their ingredients can change.

If you haven't yet been told by anyone, make sure you replace old pots and pans and cookie sheets that are scratched, wooden spoons, wooden cutting boards, etc. because they can harbor gluten. Give everything in your kitchen a good scrub and clean out any crummy crevices if you have them. Keep all gluten-free foods separate from the regular stuff and do not share a toaster, pasta strainer or condiments with gluten-eaters as it's easy to spread contamination that way.

I wish they had tests in which you didn't need to poison yourself. The genetic test doesn't require this, but it only indicates if you have the HLA DQ2 or (and) DQ8 gene(s), not if celiac is activated. I doubt it would help if you map out what you eat in terms of nutrition, because doctors are very lacking in this knowledge, too. Perhaps a note from a nutritionist would help. A doctor friend of mine said they only studied celiac for a few minutes in school, and she knew nothing about it. All you can do is say no.

Keep in mind that there have been some 27 genes shown to be associated with celiac and non-celiac gluten intolerance BESIDES DQ2 and DQ8 genes..those are just the two most commonly recognized and by some doctors and organizations, the only accepted. My GI tested me and when I turned up not to have them, we did an endoscopy and diet trial and he diagnosed me with Celiac, aware that there is so much about this disease that is not yet understood by doctors.

I'm not sure where the OP is from, but I've heard in Europe they recognize more genes than the US doctors typically do.

^ Thanks. That's exactly along the lines of what I was talking about...things that just seem to happen regardless of whether we are 100% glutened or 100% gluten-free. I have a lot of issues with candida that just keeps coming back and I know overgrowth is often caused by a lack of the good bacteria that keep the yeast in check.

Just a warning about the recipes that use Betty Crocker "gluten-free" mixes...I'd be wary of using them. I know many have eaten the mixes without any problems, but I get terribly sick, glutened, from them and I know others who have the same experience. I'm always skeptical of mainstream companies that try to jump on the gluten-free bandwagon.

Just to add something, since the above poster did mention foil for pans...keep in mind that if you bring anything that needs to be cooked in pots or pans that cross-contamination may be an issue. I second the foil recommendation, but that won't work for everything (you can't exactly cook pasta in a pot with foil). I can safely use other peoples pots and pans if they've been washed thoroughly but others can't, and there's always the question of the damage we can't feel for those who aren't sensitive enough to get sick from pots and pans.

This is mostly me being curious. When I started getting sick and no one knew what was wrong, I became highly in tune with everything about my body that didn't seem normal. I'm the same way now that I'm gluten-free and healing; I'm very aware of different parts of my body and what they're doing.

I'm not sick anymore, except when I make a mistake, and I few myself getting stronger again. But I still have a few funny little things that I have started to wonder about. There's always the possibility that my body is still taking awhile to fully heal from nutrient deprivation and everything, I know that. But what I'm wondering is, have any of you found that Celiac has effects on your body that a completely gluten-free diet does not resolve? Not things caused by unknown CC or tiny amounts of gluten, not lasting effects of damage...just like, things that maybe have absolutely nothing to do with gluten at all-they just come with the genetic abnormality, or whatever.

Thoughts? Experiences?

I'm another one with the same experience. I was a competitive dancer and also spent days running around outside in warm weather. When I started showing Celiac symptoms I didn't have the energy to do anything, I could take a short walk without feeling hot, exhausted, short of breath and nauseous. I'm showing little improvement after 2 months gluten-free since I was diagnosed, but it's too terribly cold, snowy and windy to really test myself. Hopefully by the time it gets warm around here and I've been healing for 6 months or so I should be more back to my normal self.

My GI told me this was all normal. It sucks, but it's to be expected, I guess.