Need Help From A gluten-free Veteran

[Guest thatchickali]

So my symptoms that led to my diagnosis were constipation and mild nausea, pain and bloating, major anxiety issues BECAUSE, I am completely germophobia, emetophobic, and just plain getting-sick-phobic. If I feel the slightest discomfort in my body it causes sheer panic. I have learned to live this constipated and gross feeling life, and now I am terrified to feel better because what happens when I get contaminated with gluten?! I'm going to feel ill and I'm going to completely panic.

Can someone tell me what the symptoms are of contamination, how long it takes to hit you(like right when you eat it, hours after) How do you distinguish contamination from say, a stomach bug. Also I am hoping to hear from a person who had the constipation, not so much the diarrhea issue. But any advice will help. My nerves are sky-high about this. I have even considered not going on the gluten-free diet because I have learned to survive with the feelings I've had for so long and I'm scared to feel better just because I know I can't go my whole life without getting contaminated at least once.

Scared...please help. Feel free to email my personal account too. I check that constantly

[ravenwoodglass]

Welcome to the boards. Do not be afraid to go gluten-free, it is something that takes some getting used to but the change in the way you will feel both mentally and bodily will be well worth it. At first try to stay with naturally gluten free unprocessed foods as much as you can. That is going to help a lot with the fear of glutening. I have been doing this for 5 years and my CC issues are almost non-existant because I take few processed risks. If you live in a place that has a Wegmans make that the place you shop. They put a circle G on all their gluten free stuff and I have never had a CC issue with them.

There are many different reactions to unintended gluten, some will have them within a few minutes but for others it takes a couple of days. I myself know it is gluten when I have a recurrance of my anxiety, OCD and depression issues. Those had all left me within a couple months gluten-free, if I don't feel off balance and those don't appear we can be certain it wasn't gluten that did it.

You sound like you may have some OCD type issues yourself, because of the intense relief my DS and I got from those issues that may be reason enough to get thee gluten free. Within a month my son lost his lifelong hand washing compulsion, it just went away. We no longer have multiple bars of soap with deeply indented finger marks and he no longer has constantly chapped hands. I do hope you decide to go with the diet, it may actually make your life mentally much easier.

[Electra375]

Well, gluten causes nerological problems and I dare say you are one of the ones affected by gluten in that way. Being gluten-free and learning to live comfortably without feeling gross is well worth it IMO. Feeling better 99% of the time or 99.9% of the time should entice anyone to move over and accept the risk of CC. If you are careful, CC is less of an issue.

What happens if someone gets glutened, depends on the person and the quantity and type of glutening.

My son (the diarhea type Celiac) gets stomach cramps, lack of appetite, leg cramps, headaches at the worse end and simply disagreeable, mood on the lower end. These reactions happen within hours to as many as 18 hours later and last 1 day to 3 days. I should say he is just 5. In the nearly 3 years gluten-free, he has had 3 glutenings, all b/c of my dh's carelessness. 1) dh left cookies in a camp box accessible to child, 3) dh bought soft tacos and fed child w.o my knowlegde, I was napping from a long day and pregnant 3) son found dh's crackers and decided on his own to eat what he knows he should not, this was most recent and he is 5 now, but I doubt he will do it again.

My other son, a baby, had no outward signs, he just lost weight. Not good, I have no "signs" to watch for and thus have a baby scale for weekly weigh ins. Although right now that is to get his weight back up and his access to gluten is extremely limited and the entire house will be more strictly limited once he is up and moving around able to pick stuff up off the floor (ie other kids, crumbs in the kitchen and dinningroom etc.)

If you are really scared of getting a gluten reaction, then be careful. Contact the food manufactures of things not specially labeled gluten-free. Don't eat out, it is a risk. Don't have other gluten in your home. My son's glutening came from having gluten in our home and my dh not thinking.

For example when eating out - McD fries have been certified gluten-free, however they are made with wheat and dairy derivatives in the par frying before they are flash frozen. Some people react, my son is one of them, some do not as GIG stated they are okay. I knew before the fiasco that my son reacted to them and they are just a no no, well McD in and of itself is a no no -- wheat starch even in their grilled chicken breast... Some say the oil might be CC, but who's to know, I just know my son did react and now will not eat FF of any kind.

If you must eat out, call ahead and find out about the restaurant. Our chic-fil-a is safe for us, I called and asked questions about the kitchen, the preparation, etc. We can eat the Char-grilled Garden Chicken Salad and the fries if we want. That does not mean every Chic fil a on the road is safe though, probably, but not definite. Eating out is never 100% unless it is a 100% gluten-free restaurant which I have yet to see.

I do take risk with foods not specifically labeled gluten-free for my older son - now. I did not early on. I will not with the baby. Fortunately, some companies are more than willing to say whether or not their products are produced in a plant with wheat ingredients and if CC is an issue.

Many gluten-free eaters go years without a CC or glutening. Some are more sensitve than others, there really is no way to tell if you will be ultrasensitive or not. There is no way to say 100% that you can never get CC or glutened. But I can say if you are careful and don't cheat, your chances are low and feeling yuck 1X per year for a few days is probably better than 365 days of yuck.

In the early days, avoid dairy and oats. If you are DQ2 consider never having Oats safe or not, DQ2ers have the potential of a reaction similar to gluten from the oat protein, not a CC issue.

[gfpaperdoll]

hi thatchick... Yes, you will be a whole lot better off mentally & physically when you go gluten free.

Have you contacted the Austin Celiac Support Group? You are lucky to be living in Austin, it is a very gluten free friendly place. Have you been to the gluten-free place on Bee Caves Road? Wildwood Art Cafe or something like that...

Also, you have Central Market & the best Whole Foods anywhere.

& a whole bunch of restaurant choices

[tarnalberry]

While many people react very differently to getting glutened, the majority of people do not appear to get truely nauseous or need to vomit. (A few, yes, but it appears to distinctly be a minority.) Food poisoining (aka, the 24-hour flu, the stomach flu, etc.) almost always causes, at the least, distinct vomitting, and quite often a fever as well, which also is not characteristic of gluten contamination.

[DianaH]

Today marks 3 weeks since I have been diagnosed with Celiac. My main symptoms were fatigue, brain fog, low ferritin levels (down to 14 in Dec. 2006) and constipation. I just plain felt bad all the time. I have felt so much better since I have been off wheat. Tonight I went to a Mexican restaurant and ate some tortilla chips before thinking to ask if they had wheat in them . . . well, I am still new at this. I feel OK now (several hours later), but I guess I will have to see how I feel in the morning. This may be my first glutening. I was so bummed when our waitress told me the chips did have wheat in them. I have had no hesitation to go gluten-free, and it has been well worth the effort. I just hope I don't feel too bad tomorrow. I felt so great for the last two days.

[par18]

Today marks 3 weeks since I have been diagnosed with Celiac. My main symptoms were fatigue, brain fog, low ferritin levels (down to 14 in Dec. 2006) and constipation. I just plain felt bad all the time. I have felt so much better since I have been off wheat. Tonight I went to a Mexican restaurant and ate some tortilla chips before thinking to ask if they had wheat in them . . . well, I am still new at this. I feel OK now (several hours later), but I guess I will have to see how I feel in the morning. This may be my first glutening. I was so bummed when our waitress told me the chips did have wheat in them. I have had no hesitation to go gluten-free, and it has been well worth the effort. I just hope I don't feel too bad tomorrow. I felt so great for the last two days.

Hi,

When I started the diet a couple of years ago the first couple of weeks I was paronoid to say the least. I was convinced there was no way I could avoid accidental glutening. Maybe that was why I was so careful. I did not eat out at all for about 6 months. Each day that passed and I did not get any of my pre-diagnosis symptoms was a little milestone in itself. I just knew that sooner or later I was going to have a bad day. Here it is over two years later and I am still waiting for that first accident. Yes I know it is hard to believe but it is possible to heal and not show any signs of minor glutening. I am sure I have had some exposure to gluten but for some reason I have not had any reoccurance of symptoms. I am positive that if I do get a good dose of gluten somewhere down the line I would not expect to be affected more than a day or so. My pre-diagnosis symptom of chronic D went away the first 36 hours never to return. I think in some cases the body can recognize the absense of gluten just as fast as the presence of the offending agent. For this reason it has been easy for me to relax, continue to be careful and hope for the best each day. The only time I ate something that I know for sure contained wheat was some crab flavored potato chips a couple of weeks ago. After munching on a large bag over the course of a couple of days I read the label and saw the ingredient list. It said wheat starch. I had a minor panic attack but then realized that nothing had happend. I did not eat any more and reminded myself that I need to check the labels more carefully. Don't feel too bad about your experience last night and I don't think you will have too bad a response (if any) over the corn chips. If you do then just make sure you keep it simple for the next few days and let the body respond accordingly. Good luck.

Tom

[Eriella]

Hello,

I also suffer with the constipation end of the spectrum, and it does make it slightly harder to tell if I have been glutenated. My first symptom is a head rush/fuzzy feeling. I immediately drink caffeine (because it is a laxative and will speed everything through you AND you can concentrate better or I take a charcoal tablet. For the next week or two I am bloated, feel yucky, have nasty gas, and have constipation despite everything that I do. Once I "go", I return to normal within a few hours.

Gluten can produce a lot of neurological symptoms, so going off gluten may help you. Also, sticking with whole, basic foods like fresh fruit, vegetables, rice, and plain meat/fish will give you initial control with close to 100% control as long as you use new cutting boards/spoons/oven mits... Not only are these foods better for you, they also are unprocessed so there should be no gluten in them. As you feel better and get more trusting, add in frozen and canned fruits/veggies/beans, McCormick spices, and cheese. Then, once you are fine with those, start adding in specialty products and processed foods.

Good luck!

[Guest thatchickali]

I appreciate everyone's help so much, please continue to share your stories and advice, they make me not so scared to go gluten-free.

Thanks, Ali

[ArtGirl]

Everyone's reaction to gluten is different. Some have more severe reactions after a time of being gluten-free, others less. Fortunately, I'm in the second category. Also, fortunately, for most of us, these glutenings are far and few between. If you're careful, you may not have much of a problem with this.

By the way, it is so much easier to be safe at home when the entire household is gluten-free. It's just my husband and myself at home, and he is very supportive and willing to go gluten-free. He eats bread only at a restaurant. (My making delicious gluten-free muffins and cookies helps.)

And, over the year, I have found three "safe" restaurants near us (Chili's, Outback and KC Masterpiece Restaurant). Since I'm not willing to eat out very much (maybe once a month if that) then these few places are sufficient.

It's funny (not really, but at least interesting) that one can get so used to being sick that it feels "normal" and when some of the sick feeling leaves, one can almost feel at a loss, healthwise, for a time until the new well feelings become the norm. I used to spend so much time and mental energy on my body's reactions to gluten. It had been a way of life for me for 40 years! So now I'm learning a new way of life - one that gives me freedom to think of something else, freedom to go places without fear of not being close enough to a bathroom. But the mental transition was not as fast as I would have thought.

Even though it seemed that most of my improvement was of physical symptoms, I found after being gluten-free for about 3 months that my mood lifted considerably and I began to feel happy and less irritated with other people. Several posters on this forum have reported OCD symptoms leaving. I would think this would be like getting your life back. For this reason alone, the gluten-free life would have great appeal.

[StrongerToday]

I know exactly how you feel. I'd started the gluten-free diet and was doing well, then because I was finally feeling better I was so dang paranoid about getting sick that I found myself not eating. Christmas dinner, I sat there starving - even though my parents are very aware and supportive, and were reassuring me that it was all safe- I was just misrable. This went on for months until I was a total wreck - not eating or sleeping, just so scared.

What finally really helped was when I went to my dr. and he put me on an anti-depressant, anti-anxiety mediciation. Now before everyone starts yelling - this was a decision I made between myself with my physician. I did not take it lightly. I also knew I could not keep living like that! The medication has helped tremendously, I feel better then I have in years thanks to it and the gluten-free diet!

[celiacgirls]

I've been gluten-free for over a year now. I got my gluten intolerant dx from Enterolab only after my daughter who did have GI issues was dx'ed by them. My symptoms that cleared up after going gluten-free were anxiety, irritability, depression, and fatigue. Now I can tell (I think) if I've been glutened by those symptoms returning. Sometimes I can tell right away by my sudden need to take a nap but sometimes it is a few days later, when I realize that I am more tired and irritable than usual.

I try not to eat out because that is when I end up getting glutened from cc. It has been a couple of months since I have felt glutened. I think that the way I feel then must be the way I felt all the time then and it just feels worse now since I am not used to it. It is definitely worth it to be gluten-free even with the cross contamination problem.

To start out, I think it is important to eat only things you are sure are gluten-free. It is easiest to do with whole, unprocessed foods. Take the idea of cc seriously so you can be sure you are seeing what it is really like to be gluten-free. One of my early mistakes was eating some "gluten free" Mexican rice at Taco Cabana and watching the server pat it down with his hand after, I'm sure, serving everyone their flour tortillas. I scooped off the top part of my rice, thinking that would get rid of whatever gluten there might be, but felt nauseous the next day.

I live in Austin also and do mostly trust Wildwood Cafe. I have been glutened by Chick Fil A, Outback, Taco Cabana, and Hula Hut so I don't consider them to be safe even though they have a gluten-free menu. I seem to be very sensitive so it might be fine for you but I would wait until you have been very stictly gluten free before trying to eat out.