New And With Questions..

[Bekka]

Hey everyone. I'm new here, and new to gluten-free.

Right now, I am in the process of practicing a gluten-free lifestyle as to figure out whether or not I am gluten intolerant. I have no health insurance and no money outside of what I make to pay for bills and living expenses (I'm a broke 25 year old, ha) so I don't really have means to get a test done for Celiac disease. Gluten intolerance has been suggested to me in the past by doctors, but I blew it off because I was an ignorant kid and "didn't care". Recently, because I am in therapy for an ongoing eating disorder, it was suggested to me again, because we were discussing my body image. I explained to my therapist that my body image issues had much to do with how I physically felt, and I've been telling therapists and doctors this for YEARS--- you don't feel like you look that great, when you feel like hell-- and you especially don't feel good about eating when everytime you eat, you feel worse. We made the connection that the foods that seemed to make me feel even worse were foods that contained gluten.

Now, I don't know how probable this is. I really don't know a whole lot about the intolerance/disease and the differences between gluten intolerance and Celiac---I know that Celiac is an autoimmune disease...BUT, do the symptoms differ as well?

I took it upon myself to go gluten-free to see if I noticed any changes. I'm aware it can take a long time to notice differences, however in the past week, I have already noticed drastic changes in my gut. I don't feel weighted down and have irritable bowels as much. It's not perfect yet, as I suspect it's going to take a long time for me to feel "normal" if I am gluten intolerant, but it's a LOT better already.

I guess my main question though is if the symptoms for Celiac differ from those of an intolerance? I ask because I am not sure how far to take this. As far as eating goes I have been eating things that I know are gluten-free (well, to the best of anyone's knowledge, that is) but don't know how important it is to switch shampoos, etc?

I know that there are different levels of sensitivity for people. I live with a boyfriend who is far from gluten-free, and don't want to make him feel obligated to change his way of living, either.

Most of my symptoms are gastrointestinal, but I've also been struggling a lot with anxiety. I also have Raynaud's which sort of came out of nowhere when I was about 20 years old. I am considering whether or not this might be linked? And if so, can something like that be linked with a gluten intolerance, or is it more likely to be linked to Celiac because of the autoimmune aspect? I'm sort of lost. (I also struggle with a host of other symptoms that can be linked to a gluten intolerance/Celiac, much dealing with mental--i.e. foggy brain, fatigue, mood swings, etc.-- and hormonal, as well as skin rashes, the gastrointestinal stuff, etc.)

I'm meeting with a nutritionist on Friday to get things underway and some ideas (free of charge) so I'm hoping to get some answers then, too.

I am just wondering how all of you have determined how sensitive you are? Is it through testing or by observation? I know I should get the test done but simply don't have the money :/ Ideas???

[mommida]

I think everyone finds out that your reaction is an individual experience. It does seem that quite a few people feel reactions to accidental gluten exposure after being gluten free is more severe.

Symptoms of Celiac and gluten intolerance are quite a long and varied list. This has lead to many misdiagnoses for some people.

It might be helpful to keep a food journal. You can track your progress, identify other food intolerances, cross-contamination exposures, and in general just take out a lot of guess work.

Welcome to the board! There are many people willing to help with advice from their own personal experiences and support and understanding the changes you are going through.

[Kjas]

It certainly sounds like you are gluten intolerant or have celiac disease.

Raynaud's alone is inherently linked to the autoimmune system, so at a guess and along with you other symptoms I would say it's likely. Celiac disease and gluten intolerance aren't really separate things per say, its more of a spectrum. At the moment, we really don't know all there is to know about either of these conditions (barely scratched the surface actually), to the extent that many doctors, particularly GP's believe that the neurological symptoms have nothing to do with the either condition (many of us who live with it know that's incorrect). Testing can be useful but even that is somewhat flawed, as they have a 30% rate of false negatives.

As for how sensitive you are, it's just a learning curve really. When you stop reacting to obvious things, you may start reacting to the less obvious ones. The sensitivity is almost always from observation. It can take a year or so to really get the hang of it, and particularly during the first 3 months, you will probably have quite a few accidents and that's normal. If you get stuck on something or can't figure something out, most here are happy to help with answering any questions, but most of the time it's going to be trial and error.

[Bekka]

thanks guys, for your help and ideas. I am seriously considering getting a quote on how much it would cost out of pocket to get the testing done-- has anyone without insurance done it?

I've read that in order for the test to be as accurate as it can be though, that you can't be eating gluten-free before the test?

The thing that works to my advantage I think is that I've always been sort of hyper-aware of physical sensations and the way my body reacts to things, so I shouldn't have too much trouble recording my observations. I have to say though, it's amazing to me that I haven't had really any tummy trouble for the week that I've been eating gluten free...I can't even remember a time (at least not before the age of 10) that I didn't have a stomach ache for even a day or two. I did go raw-vegan/fruitarian at one point a couple years ago and also noticed a huge difference, but I still struggled with stomach issues because I am pretty certain I also have trouble with nuts. I was eating a lot of raw cashews (making "raw sauces" and stuff out of them) and I found that nuts really screwed my gut up, but at the time it was my only source of protein. I found that on days, though, where I didn't consume nuts, my gut felt pretty darn close to a million bucks...and my hair grew like crazy, too! Raynauds was almost non-existent, and mentally I felt a lot clearer than I have in yeears. Raw-vegan was way too hard to keep up with though, and I ended up gorging on junk when I switched back to a more "normal" way of eating, and then all the other problems began again. Sigh.

[researchmomma]

Welcome to the Board. My daughter is non-celiac gluten intolerant. We are seeing that she has malabsorption issues much like Celiac because she has high fecal fat (but we are hoping to rule out some other diseases like Crohn's Dissease too). However, we know she is very sensitive to gluten. So I feel the big difference between gluten intolerance and Celiac is the intestinal villous blunting which is diagnosed by biopsy.

I replied to answer your question about testing. Yes, you have to be eating gluten for them to work. Since you have only been gluten-free for one week, you could start eating it again and get the blood test in a week or two I suppose (someone more medically savvy will reply).

The cost of the blood work is about 200 dollars. We did ours without a doctor through www.ineedlabs.com. However, there is a 30% (at least) false negative. But if you really want to get the blood work done (I did) before you go completely gluten free, do it now because after you are gluten-free for a period of time, it is very hard to go back. My daughter was accidentally glutened after being gluten-free for 3 weeks and she got very sick (all the old symptoms came back with a vengeance). If her doctor asked her to eat gluten again, I am not sure we could do it. Her anxiety, moodiness and gut reactions are not worth eating eat.

If you decide to do the labs from ineedlabs.com, you will want the Comprehensive Celiac Panel, not the HLA gene test if you are trying to save money.

It sure sounds like you have Celiac with that Reynaud's diagnosis. Eating gluten free can be overwhelming in the beginning but this board is a fabulous resource so ask away. My daughter is only frustrated by gluten free if her friends are hanging and eating pizza or some other easy to grab food that she can't have. However, I then remind her that she didn't like pizza because it made her stomach hurt, etc. We laugh then. It is more about being told you can't have something than it is about eating gluten free. Hope that makes sense.

Welcome to the road of better health.

[Bekka]

Welcome to the Board. My daughter is non-celiac gluten intolerant. We are seeing that she has malabsorption issues much like Celiac because she has high fecal fat (but we are hoping to rule out some other diseases like Crohn's Dissease too). However, we know she is very sensitive to gluten. So I feel the big difference between gluten intolerance and Celiac is the intestinal villous blunting which is diagnosed by biopsy.

I replied to answer your question about testing. Yes, you have to be eating gluten for them to work. Since you have only been gluten-free for one week, you could start eating it again and get the blood test in a week or two I suppose (someone more medically savvy will reply).

The cost of the blood work is about 200 dollars. We did ours without a doctor through www.ineedlabs.com. However, there is a 30% (at least) false negative. But if you really want to get the blood work done (I did) before you go completely gluten free, do it now because after you are gluten-free for a period of time, it is very hard to go back. My daughter was accidentally glutened after being gluten-free for 3 weeks and she got very sick (all the old symptoms came back with a vengeance). If her doctor asked her to eat gluten again, I am not sure we could do it. Her anxiety, moodiness and gut reactions are not worth eating eat.

If you decide to do the labs from ineedlabs.com, you will want the Comprehensive Celiac Panel, not the HLA gene test if you are trying to save money.

It sure sounds like you have Celiac with that Reynaud's diagnosis. Eating gluten free can be overwhelming in the beginning but this board is a fabulous resource so ask away. My daughter is only frustrated by gluten free if her friends are hanging and eating pizza or some other easy to grab food that she can't have. However, I then remind her that she didn't like pizza because it made her stomach hurt, etc. We laugh then. It is more about being told you can't have something than it is about eating gluten free. Hope that makes sense.

Welcome to the road of better health.

Sigh, $200? That's not something I can afford anytime soon unfortunately

So, I guess my next question is. If I were to take the safe route of just assuming I may have Celiac just to err on the safe side of things-- would it be required to switch all hair products, body soaps, laundry detergents, and other things that only make contact with the skin and are not ingested? Or is this suggested because there's the assumption you will put your hands in your mouth?

What seems the most overwhelming to me, isn't even what I can't have, it's the expense of the gluten-free alternatives to get the feeling that I'm still eating foods I enjoy/other products I enjoy. I guess that would be another question... what are some strategies for living gluten free on a budget? I've read about baking your own gluten-free breads and such. Breads aren't a huge concern to me, pasta is more likely to be a point of weakness for me. And as for the hair/skin products, are there more generic, name-brand products that are gluten free so that I don't have to spend a fortune? (links to other topics about similar things or websites are cool, since I'm sure all of this has been asked at some point)

Today I have to get some new foundation makeup (clumsy and broke my bottle of it this morning) and wondering if any of the cheaper big brands carry any that are gluten free? I was using Cover Girl, but I have no idea where to start in finding out what to watch out for. I have a list of ingredients that aren't safe... but is that all I need? It seems like there can be so many different complications with cross-contaminations or mislabeling. Bah.

I do pretty well with eating gluten-free because a lot of my favorite foods are relatively simple, and I'm used to restrictive diets from being vegan for 8 years, etc. I worry more about everything else that goes into it, the skin products, the worry about CC, etc.

Another thing is trying to help my boyfriend (I live with him) understand all of this. He's super supportive and trying to learn about it but because I don't even know the ins and outs of all of it, (and I'm sure even those who have been gluten-free for years still learn things) I don't totally know how to help him understand and he's not much of a reader

Thanks again everyone. Very much appreciate the replies! <3

[researchmomma]

You can definitely go gluten free without testing but if you want to know if you are Celiac you need the testing. Is there any State or Federal programs that you would qualify for? Probably not, but thought I should ask.

I am no expert on skin care products but someone posted here that gluten is a large molecule and doesn't cross the skin barrier. Honestly, I would wait for awhile to worry about that. Start eliminating the WADS of gluten that you are ingesting. I will let others comment on that.

Do you have a Trader Joe's near you? Their rice pasta is pretty darn good and dang cheap. I have one indulgence....I cook trader joe's spiral rice pasta (they have a huge list of gluten free products including cosmetics) and I use the Kraft Mac and Cheese packet which is gluten free. I cook the pasta, set it aside, then mix the cheese packet with the butter and milk until smooth and then I toss the pasta in. Cheap and good. If you like canned chicken or tuna you can toss that in. My daughter is so happy I can make that for her.

I am sure if you start feeling better, you boyfriend will be on board. My husband thought "wow, so much work" until he witnessed how much her health improved.

[Melissa Palomo]

My opinion isn't always the popular one - but if you feel better gluten-free and don't have the means to easily get tested - then just live a gluten-free life. There's not anything I do differently than my gluten intolerant friends - we both live a gluten free lifestyle. And we both feel like crap when we eat gluten. Sure, it puts you at a higher risk for certain things later in life but not much you can do about it now.

If you later have the means to get tested, go back on gluten and do it - but IMO the goal should be to do what you have to do to feel better whether you have a Celiac diagnosis or not.

[Bekka]

researchmomma,

I may qualify actually, because I did in the past when I sprained my ankle...I'll have to check it out.

As for the skin products, I checked out what I use anyway, and I am pretty sure the stuff I use is gluten free--not sure about CC, but the ingredients themselves seem to check out just fine.

I tried some sort of rice pasta the other day with pesto, it was darn good! Didn't notice much of a difference besides the noodles seemed softer/flimsier, and I'm okay with that because I always overcooked noodles to get them mushy-soft. I have been eating a LOT of low-sodium/gluten free canned tuna and salmon on Udi's bread with that Smart Balance gluten free mayo spread...soo good.

I was laying in bed last night thinking, realizing that I wasn't going to bed with a gurgly, crampy, upset stomach--that alone is worth the gluten-free lifestyle to me. Whether or not I have a problem, I can already see I feel better...digest gluten-free foods much better.

Another question though...I read about teeth and gum problems if you're gluten intolerant/celiac-- when some of you switched to gluten-free did you notice your gums becoming more sensitive at first? The past couple days when I brush my gums bleed like crazy and they never did before? I've had gingivitis for quite some time but never had a big problem with it before.

And Melissa, I like your way of looking at it. Like I said the lack of stomach problems alone is worth it to me.

Thanks guys!