15 replies to this topic

[Nadtorious]

I've had celiac disease for a little while now-getting used to the diet and how to cope. I've determined that I'm pretty darn sensitive-I can't tolerate any of the pre-made gluten-free foods (breads, cookies, pastas, etc.). I've been doing a whole foods diet for a few months now-meat, potatoes, eggs, veggies, fruits, and am feeling great. I'm coming close to getting it down to nearly 100%-however, I've noticed lately that my morning breakfast of hardboiled eggs and a baked potato have been giving me small but noticeable reactions.
I know it's not from cross-contamination-I have a gluten-free kitchen. I don't put anything on either food-just plain eggs and potatoes. The only two things I can think of are the pot I boil my eggs in-it was a hand-me-down from my gluten-eating sister. I washed the pot three times in the dishwasher before even bringing it into my house-and it's stainless steel, which I've heard does not absorb gluten. The other consideration which my incredibly patient and supportive fiance brought up is the eggs-I don't wash them before I boil them. Could this be it?
I'm getting so frustrated-I'm almost positive it's nothing else-my toothpaste, soap, cosmetics, and all else are gluten-free, my job isn't causing it, and I'm not putting anything in my mouth besides my food. I'd love to hear everyone's opinion on how sensitive they are-I know personally I can't even walk into a grocery store without having a reaction.
Please help!!!!!!!
Nadia in Denver

[Alexolua]

Just an idea, do you have any food allergies? Might be good to look into that. Though I'd figure if you had one to eggs, you'd have a worse reaction.

The pot, does it have stratches? I've heard if it's stratched, better to get a new one, if it's been used for gluten foods.

Gluten on the eggs? No clue.. anything is possible? Try washing them before you cook them. See if it helps, and should be quick.

Do other people eat at work? If so, they could get gluten on their hands, and if you touch something they touched, then you could have gluten on your hands. Least, I think gluten can spread like that.. and same with your Husband, if he eats things with gluten, if not at home, but out of the house, he could bring traces in with him.

I think that's all possible, I could be wrong.. but that would bring being super safe to a new level. Good to hear you are feeling better though. =)

[burdee]

Hi Nadia:
When my excruciating abdominal pains made me suspect I had celiac disease, I eliminated gluten and felt better immediately, but not really well. The more gluten sleuthing I did, the more I found gluten 'mystery' ingredients in condiments and seasonings I trusted. Then I discovered my vitamins and even my toothpaste contained gluten. I also had a bad habit of licking envelopes and stamps (also gluten containing). However, even after eliminating every conceivable gluten source, I STILL had symptoms (not as excruciatingly painful, but still cramps, bloating, and gas). After receiving the results of my Enterolab tests, I learned I formed antibodies to CASEIN as well as gluten, so I had to eliminate all sources of dairy (cow's milk). When I tried to substitute soy products for dairy I again had bad reactions. NOW after eliminating gluten, dairy AND soy, I have finally had some pain free days. However, with even a little slip (esp. gluten but also the others) can plunge me back into symptoms.

I realized once I took away the worst offender (gluten), my symptoms were not excruciating, but still there. So I had to look for other sources of symptoms. I suggest you consider an allergy to eggs or nightshade family foods (potatoes, tomatoes, peppers) as well as look through all the nonfood substances you consume (vitamins, toothpaste, glue from stamps & envelopes) and every condiment and seasoning. The best thing my local celiac support group leader repeatedly told me was: "If you're still having symptoms you're still consuming gluten or something harmful to your body."
BURDEE

[judy04]

Hi,

I'd bet on the eggs, i've had to switch to egg whites only,
i'm feeling a lot better. I do miss the eggs....oh well.

[Nadtorious]

I talked with my dietician and she brought up a couple of points-
My symptoms to gluten ingestion are fatigue and stiff joints these days-I haven't had the tummy issues for a couple years now. She told me to drink more water-LOTS more-and I tried that today and it helped significantly
Excessive potassium (which I get a whole lot of) can cause GI problems too. Potassium's gotta be balanced out with sodium to keep the electrolytes balanced in the body. Since I don't eat processed foods, I don't really get any sodium unless I'm salting my food. Tried that this morning too, and so far I've felt fine all day. Strange.
When I was diagnosed, I had the food allergy/intolerance tests done because it seemed like nothing agreed with the tummy. It all came back negative, but I discovered a few things-Lactaid is most certainly NOT gluten free (tried it on it's own one day and had a reaction) and a few soy milks I tried were also not. I'm also very concious of what comes in between my food and my mouth-I normally won't eat with my fingers unless they've been washed, I haven't licked a stamp in what seems like eons, and I don't take any supplements/meds.
So the real question is, is it ever possible to be 100% gluten free?

[Carriefaith]

I used to think that practically everything I ate was contaminated with gluten because I was getting reactions to almost everything I ate. After 4 months into the gluten-free diet I wasn't getting much better.

My GI doctor said that everything I ate could not be contaminated with gluten.
Turns out I have both Celiac Diease and irritable bowel syndrome (IBS) (I am also lactose intolerant). My GI doctor told me that the celiac disease probably brought on the IBS.

I am now on a medication (Modulon) for IBS and am feeling a lot better and I don't get sick all the time.

Hope this helps!

-Carrie

[burdee]

This is just my experience and what I've heard from my naturopath, but Irritable Bowel Syndrome is just a diagnostic label to describe SYMPTOMS. Doctors don't know the cause of those symptoms and even call IBS a functional disorder, meaning the intestines are functioning just fine, but the patient has all that mysterious pain. Your doctor was absolutely right when he said celiac caused the IBS symptoms, but the DISEASE is Celiac, not IBS. However, since doctors don't know the 'cause' of IBS and usually refuse to acknowledge that celiac disease causes most IBS symptoms (40% of celiac disease is misdiagnosed as IBS), drug companies are free to throw new drugs at 'IBS symptoms'. Watch out for side effects or gluten containing IBS drug 'treatments'.

Glad to hear you're feeling better. Do you use 'lactaid' supplements for your lactose intolerance? BTW those ARE gluten free. However, if using lactaid supplements before consuming dairy doesn't prevent your symptoms, you may also have casein (milk protein) intolerance and have to avoid all form's of cow's milk (even goat's milk has casein).
BURDEE

[judy04]

Hi,

I just wanted to reiterate(sp?) that the original Lactaid,
made by McNeil, makers of Tylenol, is gluten-free. I got the
complete list from the company.

[Nadtorious]

My abdominal pain to reactions stopped about 6 months after my diagnosis, nowadays I can only tell from fatigue and from joint pain-and migraines. I don't drink anything except water. I took lactaid without drinking any milk, on an empty stomach, no chance of anything else giving me a reaction-and had a reaction to it. Most gluten-free foods on the market still contain gluten-there are a couple of articles about it on the internet. I've spoken with a few Celiacs who seem as sensitive as I am and got the idea for the whole foods diet from them. I feel great otherwise-for the first time since I was a kid I feel 100% normal-except for the very limited diet (and I hate to cook
I listened to too many doctors that told me too many wrong things about what was going on with me before I learned just to start listening to my body. If a "gluten free" food gives me a reaction, then I don't eat it anymore. Certain celiacs are more sensitive than others-When I was first diagnosed, I was still drinking beer and eating oatmeal and felt perfect. Has anyone else noticed they've gotten more sensitive the longer they've been diagnosed? I've had it for 3 years now, and seem to feel better but get more sensitive every day.
peace-
Nadia

[burdee]

Hi Nadia:
In answer to someone else's question about 'lactaid' supplements, I checked the ingredients on lactaid Ultra chewable tablets. First inactive ingredient was mannitol, an artificial sweetener which, like sorbitol, can cause cramping, bloating and gas in some people. I am extremely sensitive to sorbitol, but mannitol didn't bother me as much. Perhaps it was the mannitol which bothered you, because "lactaid" supplements are gluten-free.

Even after removing all possible sources of gluten I still had reactions until I learned I was intolerant of and must avoid CASEIN (milk protein, so I couldn't have any dairy) as well as gluten. Then when I tried to substitute soy for dairy, I had reactions to soy substitutes. So I now avoid gluten, casein and soy and am doing MUCH better. However certain acidic foods like tomatoes, berries, wine or caffeine in more than very small portions can also give me some gas and bloating (fortunately no pain like gluten/dairy/soy cause). So I think you are wise to just avoid whatever bothers you. We know our own bodies better than any doctor or diet authority what we can eat according to our body feedback.
BURDEE

[YankeeDB]

After my celiac disease diagnoses, I did the enterolab test set for milk, eggs, and yeast and showed sensitivity to all.

Later I did the York 113 foods sensitivity test and it showed problems with eggs, dairy, yeast, soy, cashews, pears and sunflower seeds.

I now use an egg replacer and finally realized I needed to eliminate most salad dressings (there's yeast in vinegar). It is really hard to give up soy as it is in most margarines--finally found Smart Squeeze so I'll see how that works.

I'm also wary of supplements. Almost anything processed is suspect for me.
Even the yeast-free, gluten-free breads seem problematic, unfortunately.

It's an ongoing challenge to find healthy, enjoyable food that makes me feel good. But I keep working on it!

[Carriefaith]

burdee,
Thanks for your input. My GI doctor thought that after 4 months on the gluten free diet that I should be feeling better but I wasn't really feeling any better at all. I was still very sick. It was very dissapointing to try so hard on a gluten-free diet and see hardly any results. I thought I was doing something wrong.

Maybe my intestines needed more time to heal? I don't know. I know there was damage to my intestines because I had a postive biopsy. But maybe the damage was quite extensive and my intestines just need a longer healing time.

It seems like a lot of people on this board are still very sick after months of being gluten free so maybe certain people need a longer time to heal before they feel better.

I am still not 100% but I feel much better on the medication. The medication seems to control "things" to a certain degree. It makes life a lot easier.

I can't tolerate any dairy even with lactaid, so maybe I am casein intolerant. I refuse to go near any dairy products because of the reactions I get.

[burdee]

Hi "Medaka": I suspect people who are still struggling with symptoms even after many months on the gluten-free diet either have other sensitivities so they need to avoid other foods or they aren't avoiding ALL sources of gluten. During my first coupla' months I kept finding more and more sources of gluten from cross-contamination, mystery ingredients and health care products (vitamins and toothpaste) which I hadn't thought of. Then learning about soy and casein helped me eliminate some more symptom sources. Whenever I have symptoms I ALWAYS reconsider new or different foods I have eating in the day(s) preceding my symptoms. However, I've only been gluten-free 16 weeks, dairy free for 6 weeks and soy free for a few weeks, so I also suspect my intestines are still just sore from many years of celiac disease abuse.

I liked what YankeeDB said about testing for all those other things. My body seems to be telling me that acidic stuff (tomatoes, raspberries, etc.) cause problems right now, so I'm avoiding those. When I first visited a naturopath about my celiac disease symptoms (almost 4 months ago), he gave me a LONG list of foods which could be possible allergens. I was overwhelmed and didn't want to avoid ALL that stuff. However that list divided commonly eaten foods into 3 categories--least likely to cause problems, sometimes causes problems and most likely to cause allergic reactions. Rather than just avoiding the 'worst offender' column, I considered which foods I KNOW don't bother me (such as peanuts, eggs, corn, potatoes) and which ones are rather questionable for me (acidic fruits, caffeine, alcohol). Currently, I don't want to spend more money for allergy tests (I did the full Enterolab package of tests), so I rely on that list of 'questionables' to discern the source of any recurring symptoms. However, if you have the inclination, money and time to do allergy tests, that might help you figure out why you still have symptoms.
BURDEE

[jvs]

Burdee, I too, have excruciating pain from eating gluten. It seems like most people talk about constipation, etc. and don't mention pain. For me, it's the worst pain and I've gone to the ER twice with it. I've been gluten-free for 7 months now without pain. Then last night the pain was back and woke me up. I don't have any idea what caused it and will have to go over everthing I ate yesterday. My husband cooked and I will have to check any sauces that he used. (He promises to read everything and has been good about it but...)

Anyway, when you get the pain does water help? If I drink water the pain goes away. I also have some pills but I try the water first and so far it's worked! Just wondering if this is the same for you. Jane