I Could Use Some Reassurance Or Advice

[ellen123]

I could really use some advice, reassurance, or a reality check. I'm sitting up in bed at 3 AM because I'm so itchy and uncomfortable (for the second night in a row) and I'm beginning to question the rationality of remaining gluten-free when my reaction to an accidental glutening makes me so much sicker than I ever was before. In fact, I'm kind of starting to panic a bit and feel confused. Maybe it's just lack of sleep, but there's something about this whole gluten-free experience that is making me question whether I'm doing the right thing. I've been gluten-free since early February, and generally it's been a positive experience -- I've had a lot of improvement in my symptoms (headaches, severe neck pain, peripheral neuropathy, DH); my family is cooperative, and overall I have had no trouble sticking to a gluten-free diet. There were a few times in the beginning when I was CC'd or accidentally ate something without knowing it had gluten and had a minor flare-up of symptoms (all symptoms came back, but not for long). But recently, after at least a month of having no "accidents," I must have eaten something wrong, and now I'm so much worse off than ever before. It was either movie popcorn which I thought was gluten-free, or salad dressing with "natural flavoring," as nothing else in my diet was any different. I started with a headache and neck ache last week, then I noticed the peripheral neuropathy was flaring up, then, when those went away, the itchy bumps started, at first one or two, and now, they're all over my body, in places I never had them before, and so many more than I ever had before, it's really scaring me. And of course, they itch like crazy.

But here's the deeper problem: I'm feeling like, if I'm going to get so much sicker, so much worse off than I ever felt before I was gluten-free, how can this be healthy? This just seems counter-intuitive. How can I be getting healthier when I feel so much worse when the symptoms do come back? I know many people will say that, over time, I'll get better and then the symptoms won't come back so powerfully if I have an accident. But that's not really reassuring at the moment. It still feels like, if I can break out like this all over my body, something must be WRONG. This just doesn't feel like a sign that I'm better off than I was before. How can it be wise to go gluten-free only to find that, yeah, my headaches are gone, my neck pain is gone, my foot feels better, but if I slip up and eat the wrong thing, or brush up against someone who has flour on his hands, or breathe in the air where someone has been baking, I will get a week or more of pain and discomfort rather than the couple of days of pain I had before I was gluten-free?

Also, while I understand the issues, I understand about celiac disease and the terrible damage and potential damage gluten can do to those of us who are gluten intolerant, I've also read a lot on this forum about how going gluten free can make you more sensitive, and that many people started out only sensitive to gluten and then developed sensitivities to other foods. And this is really scaring me. How can it be healthier to pursue a dietary lifestyle that makes you even more sensitive, more allergic to food, sometimes an increasingly wide variety of foods? I started thinking about the movie popcorn I ate last week (after being assured there was no gluten in it) and then remembered maybe it had sea salt. So I thought maybe it was iodine that made my rash so much worse (although that wouldn't explain the headache and neckache.) Then I started thinking what others here on the forum might say: Maybe it was something else? Maybe I'm reacting to some other food like milk or eggs or soy or . . . . Maybe I've developed a new sensitivity to something else?

So now as I sit here at 4 AM, suffering with this horrendous rash, I'm thinking: what have I done?! How can I be so sure I'm doing the right thing for my health? I have gone from thinking of myself as a pretty healthy person who, unfortunately, suffered from some neurological symptoms and occasional bouts of a few itchy spots, to someone who's going to be sickened once a month in a much more dramatic way any time I eat the wrong thing, not even deliberately, but accidentally. And who knows? Maybe since going gluten-free, I've become "so sensitive" that now my body may be reacting to other foods as well? Is that really healthier?

Can anyone shed some light on this for me? I'd really appreciate your input.

Ellen

P.S. Background: I've been gluten-free since early February, self-diagnosed after researching my symptoms. Prior to that I suffered from: chronic neck pain over 25+ years, frequent headaches usually associated with the neck pain, and during the past year or 2 only, I started experiencing peripheral neuropathy in one foot and occasionally woke up with a few spider-like itchy or painful bumps, which went away fairly quickly. No gastro-intestinal symptoms.

[MDRB]

You are kind of answering your own questions in your post. You are right about one thing, it is really hard.

I am also going through a hard time, I am questioning my health, maybe I have an additional health issue?

The main motivator for me is the increased risk of cancer celiac patients get from eating gluten, its something like 70% more likely.

As for your other questions, you already have the answers, it will get better with time, you could have another food or health issue.

I would suggest sticking to the gluten free diet and doing everything you can to speed up your recovery.

I'm sorry that you are having such a hard time, I hope you feel better soon.

[feelingbetter]

Sorry to hear you are feeling rough. I am too for that matter. I have been gluten free for 2 months and dairy free for 1 month. In this amount of time I have also figured out that I cannot have corn, soy and most processed foods like rice bread. Popcorn for me is absolute poison.

My hubby got glutened yesterday when he ate some salad at work. It had some kind of salad dressing on it. Today he has the neck and shoulder pain.

I do think this diet is difficult but from what I hear from those who stick with it the rewards are great.

Better days ahead.

[Jestgar]

But here's the deeper problem: I'm feeling like, if I'm going to get so much sicker, so much worse off than I ever felt before I was gluten-free, how can this be healthy? This just seems counter-intuitive. How can I be getting healthier when I feel so much worse when the symptoms do come back? I know many people will say that, over time, I'll get better and then the symptoms won't come back so powerfully if I have an accident. But that's not really reassuring at the moment. It still feels like, if I can break out like this all over my body, something must be WRONG. This just doesn't feel like a sign that I'm better off than I was before. How can it be wise to go gluten-free only to find that, yeah, my headaches are gone, my neck pain is gone, my foot feels better, but if I slip up and eat the wrong thing, or brush up against someone who has flour on his hands, or breathe in the air where someone has been baking, I will get a week or more of pain and discomfort rather than the couple of days of pain I had before I was gluten-free?

Rephrase your question and leave out the 'food' part of it. If you slap your arm, you'll get a brief sting, then it'll go away. If you keep slapping, eventually your arm will become desensitized, but you may actually be doing more damage.

Assume you've slapped long enough to cause a bit of nerve damage. It won't feel too bad, because all of your nerves in the area have stopped sending pain messages to your brain.

Now you stop slapping. You feel some weird, unexpected pains as the nerves begin to function again but that eventually goes away too.

Now you slap your arm once. Lightly. Those nerves that have been damaged hyper-react and send massive pain signals to your brain - far out of proportion to the slap. What they are telling your brain is 'this is wrong. we cannot compensate, we cannot recover from more damage. this must not be allowed to continue.' If you continue to slap despite the warning, eventually it will stop hurting again, but at the expense of destroying your arm.

If you can keep from slapping your arm long enough, the nerves may heal enough to be able to tolerate an occasional slap now and then. Or they may not. It all depends on the amount of damage you've done.

[missy'smom]

When my FIL, who is a doctor, learned how sensitive I am he said "that's a good thing" and I have to agree. My body seems to have zero tolerance for gluten and in the end I see that as being good because it will keep me healthy. I know exactly what is OK for me to eat and what is not. Look at these reactions as your bodies way of teaching you and learn from them. The way I see it I am not more sensitive than I was before, it's just that other things aren't getting in the way now so I can see it more clearly. I think that's how it is sometimes with those who have other sensitivities. Don't worry that you will develope more. Just concentrate on the gluten. Worry and stress just contribute to our fatigue. Don't make any decisions while you're not feeling well. Wait 'till you feel better and have more perspective. Check the natural flavors on the dressing and don't assume that popcorn is gluten-free. I recently snuck in a whole Amy's meal that was warmed up at the healthfood store that I bought it at. I put it back in the box and into a paper bag and nobody asked me about it. If anyone had I would have told them the truth, that I hadn't had lunch and that there was nothing I could eat aside from some candy and drinks, which we purchased. Hang in there.

[Welda Johnson]

Hi Ellen,

I'm sorry you're feeling so bad. I have almost forgotten what those feelings were like, I have felt well for so long, so I can assure you that things will get better if you stick to the diet. There may be more modifications to your diet coming, but you will learn through this process just how strong you have been all your life, and how strong you are now. I have the feeling that years from now, when you're feeling great, you will be able to help others. I thnk Missy's Mom is right. You're just beginning to weed through a thicket of sensitivities, which will become more apparent as your body is healing. It is imperative to be aware of food additives and those to which you are intolerant, as well as foods themselves. Reading labels and ingredients becomes second nature, as does providing food for yourself that you KNOW is safe, even when going to the movies, to theme parks, or elsewhere.

I have plastic containers and cloth bags, some with plastic linings, just for taking foods with me, wherever I go. I am allergic to all grains, all milk & dairy, egg whites, yeast, casein, whey, etc. I recently stopped all meats because they contributed to my asthma. I have had problems since age 8 and am now 63 but since dedicating myself to this diet totally five years ago, I feel so much better. I sleep better, am able to exercise each day, breathe so much better, and feel so much better.

I am hoping that you will stick strictly to this diet, and learn more about what your body is trying to tell you. My sister has Celiac and refuses to change her diet--she has had thyroid cancer. colon polyps that were diagnosed cancerous but, thank God, proved not to be, and recently had a growth on her leg removed that was termed non-malignant skin cancer.

Enterolab.com can send a test kit to your home so you can take a stool sample and learn if you're allergic to all grains, milk and dairy, etc. I wish you love and care in your quest for good health. Welda

[ellen123]

Well I'm really grateful to all of you for your thoughtful, compassionate responses. Each of you had something to say that made a lot of sense, reassured me, and calmed me down. Now that I have my head back on, I won't give up. I may not feel better physically (yet), but emotionally I feel so much better. Thanks again.

Ellen

[Jestgar]

I am so glad you're going to stick with it. Some people find the gluten-free diet so difficult they're willing to accept any reason in order to stop.

The reactions may get better with time. After two years gluten-free, I only get mild fatigue, and only if seriously CC'd.

[ellen123]

I am so glad you're going to stick with it. Some people find the gluten-free diet so difficult they're willing to accept any reason in order to stop.

The reactions may get better with time. After two years gluten-free, I only get mild fatigue, and only if seriously CC'd.

Thanks for the support. Your arm-slapping analogy was great, by the way. Sometimes a concrete example does the trick.

[JNBunnie1]

Thanks for the support. Your arm-slapping analogy was great, by the way. Sometimes a concrete example does the trick.

You're right, that was a fabulous analogy. I came up with a good one a while ago too, of course I've forgotten it by now.....

[Calicoe]

Hi Ellen and everyone:

I have been lurking here for a couple of weeks, and this is my very first post. I needed to respond immediately to let Ellen know that she is not alone. Increased sensitivities are exactly what has started to occur with me. I am still so new at figuring out celiac that it has only been about 1 month since self-diagnosis, but the information that I have gotten off of this board has helped me put my life-long mysterious illnesses into perspective.

Right now, I am too tired and headache-y to explain everything, so I will be brief, but I will be back. But now that I have started to seriously eliminate gluten but am still very much a newbie, I have noticed definite and unambiguous reactions to corn, and suspect eggs, soy, and dark chocolate. My current headache is due to chocolate; last week is was corn, along with that horrible buzzing. Yesterday I had eggs, and I started sneezing again, with tell tale runny nose and red eyes. With soy, I seem to experience excessive thirst, and I was peeing all day yesterday.

This is a short note just to check in with Ellen, but I am really scared, guys. I have never been so chronically ill in my life. I have always suffered from neck and lower back pain (sacrum), migraines, clogged ears (with the right ear more clogged than the other), fussy skin, strep throats and bouts of bronchitis, swollen glands, grinding teeth as a child, and intolerance to even the mildest birth control pills. I was adopted as an infant, and I recently found out that my biological brother was suffering from bronchitis this past January like me, and then was recently checked into a hospital for debilitating hip joint pain which he thought was gout. They ran a bunch of tests and couldn't come up with a diagnosis.

In grad school in 2002, I removed dairy from my diet for a summer and cut down on "pasta and bread" and then went back to grad school and started eating it again. My face swelled up, my eyes were red and glazed over, and I could hardly breathe. It was visible to everyone as an emergency and I went to the campus doctor. No diagnosis.

Over the last 2 years, I have been suffering with horrible GI distress while living in Thailand. I cut out "pasta and bread" again to stay slim, but found that the Japanese diet of salmon, seaweed and miso soup was incredible for my health and debilitating migraines and menstrual symptoms. I felt great but didn't know why yet! I thought it was the tofu and salmon. While in Thailand, there was also a lot of GI distress, but also many variables. I also became infected with giardia parasites. I was treated twice there with albenzole.

Upon my return to the States in Oct. 2006, I also returned to bread, pastas, cheeses, and dark chocolate on a regular basis. My gut was horrible, and still showed all of the GI signs of giardia. I went to a health clinic (no health insurance), and they gave me two rounds of flagyl (I also had bacterial vaginosis at the time). I also got myself a highly stressful job, and my GI symptoms became horrible. I truly felt diseased. I was at that job and quit in Sept. 2007, but not before I saw a horrible doctor at an HMO last April.

This is where our current story begins: I had all the GI distress, plus immune responses such as sneezing and constant nose drip, watery eyes, etc. He diagnosed me as lactose intolerant and wanted to call it a day, and I asked for a blood test to determine if I had a milk allergy. The test came back positive for a milk allergy, and he said that I was also showing anemia, a high white blood cell count, and candida. I didn't know what that meant until I found all of you good people on this site a few weeks ago! I first googled for wheat allergy, and my knowledge has grown so much since then. Before I googled, I got to the point of having a migraine every day, and horrible GI distress that I was sure would lead to cancer. I finally made a direct connection with wheat, and the rest is history.

But, I quit that horrible stressful job and now have no health insurance. I have all of you, and I have just started to learn how to eliminate gluten, but am still very much in the rice cracker and bland potatoes stage. And, like Ellen, I am now freaking out because I am seeing increased sensitivities to other food.

I'm so glad I found you guys, and I'm sorry my post is much longer than I promised. I had been putting off my first post because I knew I had so much to say and didn't know where to start. So, I start here, on Ellen's thread.

Ellen, you are not alone.

[ellen123]

Welcome to the site, Calicoe, and thanks for checking in. I'm sorry to hear that you, too, are feeling badly. But I'm also learning a great deal from this forum and the articles on this site, and each time I log in, I either discover some new helpful tip, or at least I gain comfort from others' stories and advice. Like 2 days ago, I learned in the DH forum that moist black tea bags are really effective to relieve the ITCHING from DH I tried it and it worked!

I'm at the point now where I'm not yet going to eliminate other foods, although it's seeming like it'll probably be necessary somewhere down the pike. But now that I'm thinking again and not panicking, I'm guessing that my latest accidental glutening resulted in such dramatically worse symptoms because I ate a whole lot of gluten -- I shared a whole bag of suspiciously good-tasting popcorn with my husband, thinking, for some stupid reason, that it was OK. In the previous instances in which I slipped up, it seemed like it was through cross-contamination, not deliberate eating something in a larger quantity, and my symptoms came back immediately, but not for so long. Today, over a week after the Great Popcorn Incident, I'm still covered with red itchy bumps and new ones are still coming up.

Anyway, just as everyone here, including you, has reassured me, let me send it right back to you. In spite of my little panic outburst the other night, I still feel much better (well, I will after this latest monster DH is goine) and I feel like I will be able to manage whatever food issues come my way. I'd rather eliminate stuff that's bad for me, whether it's fair or not, whether easy or not, than be sick and disabled from enjoying the rest that life has to offer. Best of luck to you. I'll look forward to reading your future posts to come. Ellen

[Calicoe]

Thanks Ellen. I look forward to us figuring out this journey together. You are right about feeling much better. I don't have GI issues right now, only migraines, slightly better sinus drip, and a canker sore (they started in grad school). Out of necessity, I have to eliminate the chocolate and corn because of the headaches. I will work on the rest.

The scariest thing is noticing some of the neurological damage, like forgetting or stumbling on known words and jumbled phrases that will fly out of my mouth. But, I am so glad that I have started to decrease my almost certain chances of intestinal cancers.

Look forward to talking to you again on the forum.