I Swear I Didnt Eat Gluten

[Guest Qtsy]

Hello,

I was diagnosed with Celiac Disease in February of 2005 and have changed my lifestyle to accomadate this new diet. I have had a few accidental ingestions since then (I thought something was gluten-free and found out later it wasn't). I have changed all of my shampoo, toothpaste, makeup, and food. I got rid of everything containing gluten that I know of. I won't even eat the food if I am not sure about it.

The past day or two I am having some nasty watery diarrhea and I am so exhausted. I have no clue what is going on. Am I not trying hard enough or does it take awhile for the diarrhea to go away?

Am I doing this right? I have gotten to the point where I am scared to eat.

Frustrated,

Heather

[Guest Qtsy]

P.S.

Does anyone feel pain after ingesting gluten? My doctor says that Celiac Disease causes no pain, just diarrhea.

How does everybody feel about that?

~Heather

[lovegrov]

Some people have pain. Some people don't have diarrhea.

Recovery from celiac disease takes different amounts of time for different people. Are you aware of cross contamination sources? Do you still eat out a lot?

And finally, it's also possiblke you simply hvae a virus. One of the hard things is determining whether you've made a gluten mistake or whether you're just flat out sick.

richard

[kaylee]

Hi,

are you referring to stomach/intestinal pain? If so, although I have not had it myself, ever really, my young son has severe pain with ingestion of even trace amounts of gluten. The first time he ever put two words together was following a gluten accident, when he said "tummy hurt." Needless to say, that broke my heart. He literally writhes in pain and screams uncontrollably for 1-2 hours, and then the worst is over. It is very hard to watch, knowing we just have to wait it out. I am expecting that as he gets older things will either settle down a bit painwise, or he will be able to try doing things actively to distract or soothe himself. For the moment I just hold him and try to connect. With all due respect to your doctor, I think you will find that pain is not that uncommon!

Kaylee

[KaitiUSA]

All I can say is...It takes time. You were only diagnosed in February 2005. For some people it takes a while to heal. It took me 3 months to feel significantly better and then another few months to get back to normal.

Also is it possible you could be getting traces into your system? Have you been overall doing better before feeling bad a few days ago? Does anyone in your house still have gluten? could you have touched some then have something with it get into your mouth?

Feel better soon...hang in there

[Guest gfinnebraska]

A lot of things one does not think about when starting a gluten-free diet is cross contamination (like Richard said). You need new pans, wooden spoons, toaster, cutting board, etc. It took me a long time to realize all the ways in which I was getting contaminated. It is a learning process that lasts a lifetime. Just start watching everything you do and see if you are still having reactions. You may want to give up dairy for a few months as well while you heal. Good luck!

[Guest Qtsy]

There seems to be a lot involved with the whole cross contamination. What else do I have to look out for?

By the way, I have pretty much stopped going out for food, and when I eat at work I only eat salads, turkey deli meat, and fruits, but I think I am going to stop doing that as well.

My doctor hasn't told me much. He gave me the name then asked if I had the internet and told me to go see a dietician. "Have fun..." sorta attitude.

Oh well, what else do I need to know when I am just starting off. Is it easier to go to Whole Foods or to buy stuff off the internet. And do I really have to tell my fiance "No more gluten for you, ever!" I hope not.

You guys have been so helpful and wonderful, without you guys I would be lost!

Thank you for being so active and informative

Heather

[Guest gfinnebraska]

If you have the time, it would help a great deal to just start reading and devouring the information on this site! Everything you need to know is right here. Just start clicking and reading. Otherwise, just eating things as God made them is a good start. Nothing processed, mixed or added to. Fruit, veggies, meat, etc. If you grill a lot, make sure your grill isn't contaminated with a gluten product you used as a marinade, etc. Teriyaki sauce has gluten and is in a lot of marinades. But the best thing you can do is read, read, read!!

[mela14]

We are all still learning so don't beat yourself up!

Everyone has different reactions. I get the gut pain but worse of all is the body pain, fatigue, vertigo, racing heart.

Sometimes gluten will just slip in there but as we learn to scrutinze it will get better.

Another thing I learned is that you can get it from lotions and creams. At first I thought this was a little far fetched for me....(i guess I was still in denial)...but as I watched my diet more closely I found that certain body creams cause me to react violently with muscle pain, migraines and fatigue. Hang in there and give yourself more time. It is about 5 months for me and I am still trying to get it right. The good news is that at least we now know what we are dealing with so we can target it better! Do you think you might have other intolerances? For me soy, dairy, eggs are big killers (to name a few) that cause different bodily reactions!

OH.....for me... since going gluten-free the diahrea has stopped and I have been able to put on some weight...yeah!

Take care,

[ianm]

I only eat simply prepared unprocessed foods, meat, veggies, fruits, buckwheat, quinoa, cheese, yogurt. It is hard to avoid gluten sometimes. Saturday night I accidently glutened myself by using my son's Ninja Turtle toothpaste. I was out of it because I had gone to the funeral of a close freind that day and wasn't paying attention. I wasn't knocked out but my guts have been a little grumpy the last few days. Give it time and you will get better. I think I survived this incident because I have become as healthy as I can be right now.

[skbird]

Be careful with deli meats. There are some that are gluten-free but also some that aren't. There can be broth and additives that are gluten products. I haven't eaten a lot but I think I read that Oscar Meyer is ok (I could be wrong) and I know that most Diestel Turkey products are ok.

Here's a list of those:

All these are tested gluten-free

Breakfast Chubs

Ground Chubs

Pepperoni Snack Sticks

Turkey Franks (Hot Dogs)

Turkey Burgers

Turkey Bacon

Turkey Meatloaf

Whole Body Turkeys ~ fresh or frozen

Deli Meats (Breast Varieties) ~

Oven Roasted, Honey, No-Salt, Peppered, Herbed & Chipotle

*Either Pre-Sliced or In-Store Deli Sliced*

Sausages ~

Apple/Cranberry; Bratwurst; Italian (Mild or Hot); Kielbasa; Linguica; &

Sun-Dried Tomato/Basil

Stephanie

[flagbabyds]

About your reaction time and different reactions it totaly different from person to person. I know that I get a lot of pain and throwing up when Iget gluten, but that it just me You really need to get all new everything or at least have dedicated gluten-free thigs in the jkitchen. You don't need to make your fiance stop eating gluten, but make sure that he understands the severity of the disease. Make a gluten free cupboard, and a part of the counter that is gluten free. This is where you will put all the gluten free stuff, and that is only where it can go. Make sure that no gluten containing foods are put there either, and be really careful. A lot of deli meats do have gluten as it has already been said. Just start out with "naked" food, and work your way up from that until you feel a lot better, that is always the best way to go.

Hope you feel better

[watkinson]

Just like Stephanie said, "You have to be careful with deli meats. Most are injected with processed chicken or turkey broth. The broth has thickeners in it (Like wheat) to make the meat heavier so that they can charge more. Look through the food lists on this celiac site to see which ones are okay.

I will sometimes put a roast and onions in the crock pot, have it for dinner that night, and then slice it to have the rest of the week. super simple.

Good luck, Wendy

P.S. Apparently your doctor doesn't know anything. I used to get terrible stomache pain, like my whole torso was tied in a giant charlie horse. Terrible muscle, and joint pain. And... you don't have to have diareah at all to be a celiac. Some celiac's have no digestional problems at all, some have constipation. Oh well, I guess all of us will just have to educate our docs our selves.

[VegasCeliacBuckeye]

"All these are tested gluten-free

Breakfast Chubs

Ground Chubs

Pepperoni Snack Sticks

Turkey Franks (Hot Dogs)

Turkey Burgers

Turkey Bacon

Turkey Meatloaf

Whole Body Turkeys ~ fresh or frozen

Deli Meats (Breast Varieties) ~

Oven Roasted, Honey, No-Salt, Peppered, Herbed & Chipotle

*Either Pre-Sliced or In-Store Deli Sliced*

Sausages ~

Apple/Cranberry; Bratwurst; Italian (Mild or Hot); Kielbasa; Linguica; &

Sun-Dried Tomato/Basil"

******Be careful, this is only a listing of DIESTEL TURKEY PRODUCTS -- not ALL OF THEM. Many Turkey Deli meats have gluten in them. (I eat Carl Buddig Turkey-- products are gluten-free).

Becoming 100% gluten free is a process. It takes time and education. I learn about new things every week (often because of this board).

Over time, you will have clean pans and cutlery (they can be expensive_. You will learn to label stuff in the fridge that is yours and gluten-free (and sop nobody sticks their bread knie in your Peanut butter, butter, jam, etc).

It took me a couple of years before all of my symptoms went away. Even so, I still get "GLUTENIZED" -- it happens. Always ahve some Pepto or Immodium on hand or in the car -- it can be a lifesaver.

Things will get better...promise!

[mela14]

I've learned my lesson with lunch meat!. Before I knew about gluten I couldn't understand why i would get so sick after a turkey sandwhich from the deli! I would blame it on everything else. It's finally all coming together.....you will learn a little more each day.

I now only "brown bag" my lunches! I make sure that I make a little extra the night before for dinner and then take it for lunch the next day. Grilled chicken breasts go a long way...I cut them up in a salad with a little olive oil and have lunch!

I hope that you are feeling better today and figuring out how to eat right so that you won't get sick.

Hang in there,

[pixiegirl]

I get stomach pain when I get glutened, thats how I can for sure tell its gluten and not some sort of bug... My belly and intestines actually hurt.

Susan

[Rikki Tikki]

I have read that 20% of people with celiac continue on with the symptoms. I would imagine a small portion of those people might somehow be getting gluten in their diet. Also there is something called refactory (sp) that also occurs and is usually cleared up by steroids. I know about pain, mine used to double me over it was so bad. I didn't think I would ever be able to make it without pain meds. Take care of yourself!

[jenvan]

Glad to read these posts... I started the gluten-free diet about 2 mos ago. Still have a ways to go before feeling better (haven't noticed feeling better at all yet)... However, about 8 days ago I started getting these horrible stomach aches that last for 1/2-1 1/2 hr, with some naseau. I am going to go in for an ultrasound to check for gallstones, but am wondering if it is a celiac issue instead. I have been really good about being gluten-free and eat mostly fresh food. The abdominal pains come every afternoon. I haven't changed my diet--I've eaten the same lunch for months and months! So, I can't imagine why something would start bothering me suddenly. (My lunch is gluten-free of course). Is this similar to a gluten reaction to some of you? Before going gluten-free I was one of those who symptoms were FM and fatigue, vs stomach pains, diarrhea . I could eat a bowl of pasta and not notice any discomfort. Sometimes I think, I'm really doing a good job eating gluten-free, and other times I'm like--"Am I still missing something totally obvious?" It makes me want to only eat something labeled 'Gluten-free.' I'm sure you all have had times where you wondered if you would ever feel better...

PS--Everyone have a good weekend!

[mela14]

I've read about refractory sprue....but don't even want to to there with those thoughts!

I'm hoping that with a more stringent diet all of us can feel better.

One thing for sure is that when I accidentally ingest gluten my body is such agony. The fibro is always there but eating that "poison" just exaccerbates it!

Let's hope for better days.

[jknnej]

I rely on Sara Lee; their deli prepackaged meats are gluten-free and then you don't have to worry about getting glutened from the slicer!

If you do buy deli meats straight from behind the counter, make sure they thoroughly clean the slicer.

[jenvan]

Hillshire Farms deli select is gluten-free--the thin sliced--very good !

[Guest Qtsy]

The abdominal pains come every afternoon. I haven't changed my diet--I've eaten the same lunch for months and months! So, I can't imagine why something would start bothering me suddenly. (My lunch is gluten-free of course)

Jenvan-

Have you changed your pots, pans, wooden spoons, etc. What is your lunch? Maybe you think it is gluten-free and it isn't. I did that for a while I thought that a syrup was gluten-free and found out later it wasn't. I think that is why the first year is the hardest. Not only are you trying to heal but you don't know what products you can have. I use to love to eat, but when I first started this diet I felt scared to eat because everything could have gluten or could have come in contact with gluten. Talk about chaos. But it gets better.

[jenvan]

I haven't changed my original pots and pans. I figured putting them through the wash a few times would clean them well... Perhaps I am still eating something with gluten. It is hard at first! I will ck through things again. I am having a gallbladder ultrasound to make sure I don't have an issue there, but if that cks out okay, the pain I've been having must be a celiac thing. Since my symptoms are more 'hidden' I can't always know immediately if I've eaten something wrong or not...

[Generic]

You can have a reaction up to 6 weeks later after eating gluten. As for the stomach pain, I get severe stomach cramps along with diahrea. The pain is always right below my belly button area. I wouldn't worry about the pots and pans, just make sure they are cleaned well and you should be fine.

[GFprincess]

Along with the cross-contamination:

Someone mentioned peanut butter/butter/jelly having crumbs from other people, but also check toasters that are used by other people. You should keep your own toaster if you are using gluten-free bread items.

Another thing to watch out for is that a lot of companies SAY they are gluten free, but "are made in a factory that also produces products with wheat/gluten". This is extremely important to watch out for, because if you are as senstive to it as I am, that just doesn't work. Some say that even though they are made in a place that is contaminated, they have been tested with ELISA or whatever, and are gluten free, but that doesn't work for me either.

Also check your vitamins, medications (birth control), chapstick, etc just to make sure.

good luck!