Hey, I have some questions and thought I’d see if anyone here thought my story sounded familiar. Some background information I’m 24 male Caucasian 6’3” and overweight at about 280 (why can’t I have the weightloss symptoms heh). About 4 years ago or so in college I started having trouble that some times after eating out with my girlfriend I’d wind up getting sick (racing to the nearest bathroom on the 10 minute drive home from the restaurant even) shortly there after. At the time I attributed it to eating greasy foods and maybe gallbladder problems starting (family history of it, and in HS I ate way too much fast food). It didn’t happen all the time, but now and then. I tried to avoid greasy food a little bit more. Not a big deal but it started to cause me to be a little less social.
Now if we go back about a 1.5 years ago I was still having problems, but they started to get a little more frequent. I cut class for the day every couple weeks because I was feeling bad. Annoying for sure, definitely cut into my life, and I should have went to the doctor. What can I say, I figured it was something bad that would take a lot of invasive tests and I irrationally dismissed it and let it go and finished my degree.
Now being done with school I thought I’d enjoy myself a little, indulge my passions hobbies for a while, and work part time (read: no insurance). While I was off I was going to work on losing weight and cleaning up my diet more and wishfully hoping that would take care of it. That was last may. Now I’m not sure I could hold down a full time job with my problem. Just a month ago I decided to take a little trip to a town about an hour away for some shopping. I was half way there when all of a sudden I started getting stomach cramps and gas and the like. I stopped at 3 gas stations in the next 15 minutes and had (and I’m sure this is more than most of you want to know) terrible diarrhea. Feeling so bad I was thinking about driving to a hospital…if walking were an option at the time at least. Its pretty rare for it to be that bad though.
Usually I feel a little gassy, with some stomach cramps, and that feeling that there could be a BM any time. Sometimes they’re normal, sometimes a little fatty seeming, and sometimes all out diarrhea of what seems like impossible volume. Sometimes they’re just 3-4 small regular BM’s through the day and cramping all day. Headaches now and then, not all that often but more often that I'd think is usual. I also have a small (2" square) rash on my chest thats been there for about a year. Its itchy and I can't moisturize it away. I'm wondering if its Dermatitis herpetiformis. It doesn't seem pus filled or near as nasty as some of the pictures I've seen but it does seem to match celiac.
At first I thought gallbladder, but I don’t have any of the pain outside my stomach so I question that. I thought IBS-d so I tried more fiber, and fiber supplements, and then calcium supplements. No change. I tried going to a very low fat diet, nothing, small meals, nothing, ranitidine thinking maybe something ulcer like (despite not having bloody stools), nothing, and even dairy avoidance. All failed. I’m about to have to go to the doctor despite my fears of not having insurance at this time. It’s just become too crippling to my life. Car trips anywhere worry me to no end, social outings are unheard of, work is even too much some days, the gym is right out.
On days I go in to work I generally have a bowl of pinhead oats around lunch (1/4 cup uncooked). Some small snack mid day like an apple, a 6” subway sub for dinner. If I’m not working that it’s the same except for dinner I’ll usually have a grilled chicken breast, corn, fresh tomatoes, a small baked potato or green beans or something like that. No one food seems to be the trigger, which me wonder about gluten since it seems like in so many places. After lunch I’ll often get some mild cramping in the afternoon, and then it alternates, mild cramps one night, pretty bad and diarrhea the next night. I’m wondering if it is worth it to try a celiac type diet for a while, or if I’m just grasping at straws with my symptoms hoping I’ve found the answer and should just face the doctor and bills.
And if you read all that, thank you
cliff notes: *sometimes gas, always cramping, sometimes diarrhea, sometimes fatty stool *no pain like gallbladder *fiber and calcium don't help
Bite the bullet and get tested so you know for sure. That way you can get on with your life. Your symptoms are bad. I noticed that you have oats for lunch (bad unless they are pure, which is difficult to get in the U.S. and Canada) and a Subway sandwhich (bread again.) BUT, do NOT switch to a gluten-free diet before you are tested.
It definately sounds like celiac. And like you said, your recent spike in symptoms can very easily be related to the beer, which has a lot of gluten in it. Luckily I was diagnosed when I was 18 and didn't drink in high school, so I never acquired the taste for beer. But I have tried the Ramapo gluten free beer and think it's pretty good. Before I was diagnosed I would sometimes share your experience of feeling very ill on the drive home, especially when we'd eat a Jason's Deli. It was the WORST. There is gluten all over that damn restaurant.
My advice to you would be to do a little basic research, try the diet for a few days to see if you feel better, and NOT see a doctor about it. When I initially went gluten free, my diahrea stopped completely within less than a week. Before the diet I would probably get diahrea once or twice a week. I say to do this for a few reasons. Doctor visits/bills are never fun. There is nothing the doctor can do to help you. All a doctor would do is diagnose you since no magical drugs are required, only a diet. My final point is that you mentioned you have no insurance. If you have a positive diagnosis of celiac in your medical file, getting health insurance will be much more difficult and/or expensive. My dad cancelled our health insurance to try to get a lower rate with another company (which was an idiotic thing to do) and they saw I had "Celiac Disease," got scared, and declined me. Even though studies have shown celiacs on the diet are healthier and live an average of 5 years longer than the normal population. Insurance companies don't know sh*t. But unfortunately thats the world we live in. To tell you the truth, I've been thinking about going back to the doctor, getting tested again (since I've been gluten free), and the test should come back negative. Then maybe the insurance companies will think I don't have it anymore and will accept me! Anyway, my point is that there is no benefit in getting a positive diagnosis, except piece of mind. But, if you're feeling a lot better that should be all the piece of mind you need. After I was diagnosed, my mom did some research and thought "wow, this sounds like something I might have too." So she started the diet and noticed she was feeling better. She had mild symptoms like irritability, occasional diahrea, tingling sensation in the legs, etc. So she is self diagnosed and has been gluten free ever since. And trust me, the diet is NOT hard. It just takes some getting used to. But it is definately worth it. Hope this helps.
Name's Lee, 24/m/tx
Diagnosed in 11/01
I prefer the Paleo Diet over all others.
As an update I've been pretty much gluten free since I posted, and pretty much better. A few times I've slipped off the wagon and paid the price. I was having a bad day and ordered a pizza from my favorite local pizza shop (until this I'd get one every friday, my favorite thing). There was a violent revolution 24 hours later and the lesson learned.
I have to try mixing up some various gluten-free AP flours. I miss baking breads and things. I bought some premade rice bread that had a packet of dessicant in it and an expiration date about 1 year in the future. It should be ashamed to call itself bread, sand would be moister. I've grown accustomed to eating rice cakes for snacks, and I've consumed more rice in the past few weeks than in my whole life. But on the whole I feel much better if I watch my diet.
I had a small rash on my chest that has started to fade (despite a new one occuring on my upper leg). I now believe its dermatitis herpetiformis and hopefully it will clear up soon. To my understanding thats linked with celiac only and not gluten intolerance so at this point I don't see the need to get an official diagnosis. I really miss gluten products and I don't think its an easy change, but its worth it so far. For a beer snob, baker, and general foodie its quite a change hehe. Thanks for all your suggestions and advice!
good for you... just keep experimenting with baking with gluten-free flours. Some of your results may not be edible, but eventually you will find baking to be fun again. I've found that I like baking with mixes from The Gluten Free Pantry, Pamela's, 1-2-3 Gluten Free, Chebe, and Kinnikinick. Most of those you can order online. (or all of them!) I love the 1-2-3 Gluten Free Southern Glory Biscuits. When I make them up and then freeze them, pop them in the microwave to reheat and WOW! Just like momma used to make!
I've also noticed that there are more and more companies making gluten-free beer. Maybe you can get your local stores to get some in for you so that you don't have to give up your passion for beer. Also do some research into gluten-free home brewing, that could be a fun interesting outlet for you as well.
I remember eating TONS of rice the first few months of being gluten-free, Eventually you will find many other things you can eat and you won't feel so limited in your diet. Good luck!
My symptoms - very similar to yours, John, although yours seem severe- didn't show up until about age 27...(a very stressful time for me)...and then progressively worsened until my diagnosis 3 years later...
Sounds like gluten-free has helped you quite a bit...stick to it! Although tempted to cheat (often)...I have not intentionally ingested gluten in several months and I'm slowly regaining energy, etc....
Social situations can be uncomfortable - they often revolve around eating, don't they? Outback Steakhouse has a gluten-free menu available, it's an easy stress-free evening out or date, when you can have a good meal and not worry about your condition - or locating the restrooms as soon as you walk in the door just in case.
My only suggestion, if you are trying to limit your doctor bills, would be this: if you are having success on the diet, stay on it. No official diagnosis is going to change that, BUT if you have had these problems over such an extended period of time, you are probably lacking in some essential vitamins --- maybe just some blood work on vitamin levels (zinc, Vit A, Vit B12, Vit D) would be a good idea. I just found out my B12 is LOW LOW LOW, and I'm on weekly B12 shots to build myself back up (Hate needles, too )........
Gluten Free since 4/05 - adult onset
Symptoms for 4+ years prior
Immediate family tests negative
No Known family members w/ celiac disease
I'm glad to hear that you're feeling a lot better! I know it must be difficult at first, but it does get easier as time goes by. Since being diagnosed I've discovered that I don't react well to other foods like milk, soy, eggs, and yeast. So I try to avoid those as well.
Like Amybeth said, Outback has a gluten free menu in the restaraunt, you just have to ask for it. PF Changs also has a gluten free menu as well as Caraba's, Z Tejas, and Pei Wei. Amy's has started making a gluten free frozen pizza with a rice crust. I've had it a couple of times and it's actually quite good! It comes in plain cheese, but you could probably add your own extra toppings if you'd like. Kinnick kinnick also sells gluten free pizza crusts, as well as many other products, that are really good so you can make you're own pizza.
Stick with it. I know the diet is difficult to handle at first, but it's definately worth feeling better right?
Name's Lee, 24/m/tx
Diagnosed in 11/01
I prefer the Paleo Diet over all others.
You can get good pizza crusts from kinnikinnick... also great breads, bagels, donuts... Chebe is great for pizza sticks, add chopped pepperoni, mozzerella and extra garlic salt.... hot pockets, stuff with whatever, corn dogs, wrap dough around dog, roll till smooth, bake. Buttered rolls for stews...