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New And Frustrated
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I was diagnosed in February, and since then, I have tried so hard to get this diet thing sorted out. But the longest I have gone without feeling sick was just short of 2 weeks. I am worried because my symptoms seem to be getting worse instead of better, and the rice-based food shoots my blood sugar up so that they are starting to worry that I am becoming diabetic.

Why would I feel worse on the diet than I did before I went on it? I used to have some bathroom unpleasantry, and my fingernails were getting all groovey (not in the hippy way). Since the diet, I have found myself sooo tired sometimes that I can't function. I am becoming forgetful, and even stupid at times. I have downloaded the lists, and purchased the blue binder, and been religious about what I eat, but I still get sicker.

I thought maybe it was another food sensitivity, so I went down to only raw veggies and baked potatoes with nothing on them, and I felt fine for a couple of days. I added dairy to see if I was Lactose intollerant...LOTS of dairy. I had butter, cream cheese (the kind on the good lists), yogurt, milk, and ice cream. I was fine for several days. I had been baking my own gluten free bread since about day 2, but I stopped doing any grains of any kind, so I went back on pasta and bread and meat, which I assumed would be okay, but got sick again. Then I thought maybe eggs, and made myself a big fat omelet with cheese and green peppers. No problems.

Now I'm suspicious of meat, beans, nuts, you name it. I'm afraid to eat anything, because it doesn't seem to matter. I don't use any ingredients that are not gluten-free (or supposed to be). I even grind my own spices. Yesterday I had a pork chop grilled on my Geo Forman grill, steamed veggies (summer squash, sugar snap peas, and carrots), and grilled eggplant with gluten free mayo, parmessan cheese, and (this may be the culprit) gluten free bread crumbs I bought at an all gluten free store, but hadn't used before. They tasted like dirt anyway, so I can live without them, but I hate that I felt better eating all those convenient foods I ate before than I do going through all these contortions of shopping in strange places, reading all the labels, going online to manufacturers, and cooking and baking everything from scratch. My food has no flavor, takes forever to prepare, makes a big mess of my kitchen, distrupts my whole life because it is so time-consuming, and it seems to be doing more harm than good.

Shouldn't I start feeling better at some point? 3 months ago I was leading a relatively normal life, and now I am out sick half the time and not much use the rest of the time. I have to support myself. This is not good. I read that some people don't respond to the diet. How often does that happen, and if that's the case, then what?

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Is there any way there could be any gluten slipping into your diet? Any lipsticks/cosmetics/shampoos/soaps/lotions? Have you cleaned your cooking utensils and pans and things you cook with?Got a new toaster? Wash your hands after preparing anything with gluten?

Some people just take longer for symptoms to go away. It took me 3 months to feel better and then another few months to get back to normal. For some people that can be either shorter or longer.

Have you seen the safe and forbidden lists of foods on here? There is alot that gluten can be hidden under.

Not responding to the diet is very very very rare. It just takes time to heal it is not a quick fix...some people that I know have taken longer then a year.

To help I recommend a really good probiotic, enzymes, and vitamins.

Some people can also go through a withdrawal period when their body needs to deal with the change of not having gluten because it is a major change.

There could be a possibility you may be lactose intolerant that is common among celiacs because of damage. When I went gluten free, a few months later I was able to have milk again..I was always on and off lactose intolerant my whole life. If you think there could be something else causing problems too you could always get tested to see if you have any other intolerances.

I would give it time and make sure you are completely gluten free and ensure that nothing can slip in. Good luck :D

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Some digging for more information:

Are you getting enough vitamins/minerals?

Are you getting enough sleep/exercise?

Have you been able to identify other intolerances?

Do you have a completely gluten-free kitchen?

Have you adjusted your fat/protein/carb ratios to keep from getting blood sugar swings?

Have you significantly simplified your diet to make it easier to identify what foods are bothering you?

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I would suggest taking a trip to your local health food store. (Personally, I've never heard of an all-gluten-free store, and I'm in liberal So-Cal!) I would suspect that the bread crumbs were the culprit. What was the brand?

There are TONS of great pre-made, convenient foods that are gluten-free that you can find in stores like Wild Oats, Whole Foods and Mother's Market:

Pastas: Pastariso, Ancient Quinoa Harvest), Ener-G (I don't like this brand as well for pasta)

Pasta Sauce: Classico Sauces are ALL gluten-free. Carried at Ralph's and Kroger

Bread: I LOVE Food For Life rice bran breads. They're awesome, and they are great for breadcrumbs.

Ener-G Foods: Doughnuts, Cookies, Pretzels

Glutino: Pretzels

Frookie: Gluten-Free Chocolate Chip Cookies, Gluten-Free peanut butter cookies

Health Valley: Rice Bran graham crackers (great for a pie crust!)

Thai Kitchen: Soups, noodle dishes, Pad Thai; Read the labels, most are gluten-free.

Trader Joe's carries some GREAT premade meals that are gluten-free:

-3 cheese enchilada meals

-Tamale Meal

- Chicken Bowl Meal

- 2 kinds of Thai Curry with Rice - microwave in 2 minutes! Add some premade Just Chicken or Just Salmon for a quick, healthy meal.

- Tuna Panang Curry - 2 Minutes, use with some of their premade brown rice.

- Cheese fondue, along with some fresh veggies and Healthy Ham

Other great Trader Joes stuff:

- Hummus with Trader Joe's Savory Rice Thins

- Yogurt

- tomato-based queso dip that is INCREDIBLE! and low-fat, low-carb.

-Hormone-Free meats (including a GREAT marinated Tri-Tip roast)

All McCormick spices are gluten-free, unless expressly indicated.

DON'T skimp on the vitamins! Especially beta-carotene.

Grooved fingernails is indicative of B12 deficiency. Not surprising in a Celiac. I use sublingual B12 supplements to compensate.

Don't give up! There's a lot of stuff out there, you just have to look for it.

Cheers,

-Pat

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To everyone who responded, thanks. I was having a bad celiac disease day yesterday. I ate nothing but veggies and a little yogurt yesterday and today I am feeling better.

I'll try to respond to everyone. I thought lactose intollerant at first, and went to all veggies until I felt great, and the next day, I dumped so much dairy into my diet, I figured it would have to make me really sick if it was lactose, but I was fine.

As for the gluten-free bread crumbs, it was a European manufacturer, and I hear they are not as strict about what gluten-free means, so they may have been the culprit. I am suspicious of a pizza sauce and a cheese as well.

There is a small gluten-free market here in the Chicago area run by a sweet woman who has celiac disease. It's a wonderful place for celiacs, because everything is gluten free. It's so nice to not have to read every label or search through 20 non-gluten free brands to find one that is. I found the best pasta, noodles and cookies there, and even some really great cake mixes...none of which made me sick, with the possible exception of the bread crumbs. I should have just grated a slice of gluten-free bread.

I have been disappointed at Whole Foods, though I can pick up a few things. Since the gluten-free stuff isn't isolated, you have to dig through everything else to find something that you can eat, unless you are shopping for fresh produce or dairy. However, they promised they are going to have fresh gluten free bakery goods soon, so that will get me there more often.

I live alone, so I don't have to handle non-gluten products. I did a clean sweep of my kitchen cupboards and gave away a ton of food. I bought a bread machine and a toaster, because the lady at the gluten-free store (20 miles from me) told me all the gluten-free bread tastes better toasted. She was right. I bought cookbooks and bake my own bread, which I think is tastier and has a better texture than the rice breads I tried from Whole Foods, and it doesn't fall apart when you make a sandwich.

So, I think I have taken this thing by the horns, but when I get something bad, it REALLY hits me hard now, which is what confused me. However, I just spoke with another Celiac who said after she changed her diet, when she ate something bad, it hit her harder than before as well. So, that explains why it seems to be getting worse instead of better. I guess your body gets used to the bad stuff to some extent, but after it starts to heal, it overreacts when gluten is accidentally reintroduced. That's my theory, and I'm sticking to it.

I do simplify and then try adding things back in slowly. I"m doing that today. I have a few suspects in mind, so I'll try them one at a time once my system is clear of whatever I got two days ago.

It's encouraging to know that I am not the only one who is having a hard time figuring this out. I also appreciated the information on how sometimes it takes a year. I was feeling pressured to get "healthy" before my 6 month retest. I'm also glad to know that it's really rare to not respond to the diet. That's comforting. I can relax and just keep working at it.

I wish you all had access to a nice little gluten-free store. It's great. It might be an idea for someone wanting to start a small business. That's how this one got started. Someone's child got diagnosed, and they had all the frustrations we all have, so the father opened up a little market. It seems to do fairly well too. I dropped $370 the first visit, but I live 20 miles away, and I was new so I wanted to try just about everything to see what I liked.

That's it for today. Thanks for the support. I really needed it.

Wendy

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I'm wondering if the tiredness (and, it sounds like, some depression) might be because you aren't getting enough carbs now? All this cutting out of things from your diet sounds like you aren't eating much. I know that when I'm not eating enough, I get tired and sad. What about grains like brown rice and carbs like corn (and corn chips!)? I know I probably eat too much candy now, but I am personally just (at this point, one month in) indulging whatever I want to eat so long as it is gluten-free while I adjust to the new lifestyle!

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In response to aljf:

I don't think it's a lack of carbs causing my symptoms. Unfortunately, when I started eating all the rice-based stuff, my fasting blood sugar went from normal to 105 in about 4 weeks and 113 in another couple of weeks, which alarmed my doctor. So, I cut way back on the sweets, and rice-based foods, because rice is a simple carb and turns to sugar very quickly. I was having blood sugar fluctuations which have a different set of symptoms. When I dialed back on the rice carbs the blood sugar fluctuations stabilized immediately. I do eat potatoes however. Potatoes take a little longer to metablolize.

My feeling of exhaustion, etc., directly coincides with the abdominal difficulties, so I know it is from eating something that either has gluten, or I have some other sensitivity that I haven't identified as yet.

You might want to be careful with the candy, etc. Celiacs are at very high risk for diabetes, and we don't want to have to deal with both dietary restrictions. I sort of overreacted when I was first diagnosed. Suddenly, because I knew I couldn't have the bread, cookies and cake any more, I guess I sort of panicked. I rarely ever ate cake or brownies unless someone brought them to work. I liked the occasonal cookie, but I didn't buy them very often either. The same with bread. I LOVE good bread, but I live alone and didn't buy bread every week, because it got moldy before I could eat it. I tended to eat it more at restaurants than at home. But once I was diagnosed, I was baking bread every week, trying gluten-free cake mixes and brownies. I had my cupboard jammed with gluten-free cookies, most of which I am not even very fond of. I started eating way more carbs than I ever had before, which is why I had the blood sugar problems. I only go to extremes (as described in my posting) when I know I have contaminated myself so I can get back to normal, and then I start adding things back slowly to see if I can identify what made me sick. I will eat just veggies (including potatoes, corn, sweet potatoes, and fruit which have plenty of carbs), and dairy for a couple of days (also full of carbs) until I feel better, and then I start adding meat and other carbs one at a time.

Contrary to what you suspected, as soon as I restrict my diet, I begin to feel better. I have been 2 days on the restricted diet, and I feel fantastic this morning. Today, I will add something back into my diet and see how it sits. It's the only way to identify what is making me sick, since ingredient labels are unreliable.

I usually have a little Dove dark chocolate, and maybe some ice cream, but I have to be careful not to overload on simple carbs. It sounds like you may be doing the same thing I did. You feel cheated, so you are overcompensating for what you lost by eating a lot of stuff you otherwise wouldn't have. As long as it doesn't cause you other problems, it's probably fine for a while, but keep in mind that you are at higher risk for diabetes than the average Joe.

Thanks for your comments. We really do have to help each other, because when I talk to my doctor, all she can do is shake her head in dismay, and refer me back to "THE BAD GRAINS LIST." I celebrate every day that I feel well now.

Wendy

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Hi Wendy,

Don't those George Foreman grills have teflon or other non-stick coating? If that's the case and it was used previously to cook gluten containing foods, there could be contamination in the non-stick surface. Just a thought since it looks like you are being diligent with ingredients.

You're on the road to wellness. Hang in there.

Sarah

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Wendy, It's funny that you mention the gluten-free store/business idea. That's exactly what I'm doing! I'm in Denver CO and am just weeks away from opening by bakery/cafe/retail store. The most exciting part is seeing people who are in your situation able to have good food again, and to be able to purchase foods without needing to read every label. I hired a purchasing manager whose job it is to do all of the reading and digging to make sure all of the products we bring in to sell are gluten-free. I also have a CIA grad for a head chef. This is such a blessing because going to cullinary collage and having gluten-free generally don't go hand in hand. She is so talented and passionate about gluten-free cooking. We will offer a line of frozen entries that we are hoping to have picked up by Kroger and or Wild Oats or Whole Foods. I think that will be very exciting for gluten-free customers. I know I would have loved to be able to go to the grocery store and get an entree, or heck, even a cookie, to have something to eat when I needed the convenience.

Personally, I get so tired of cooking and shopping at every store under the sun just to round out my grocery list just so I can go home and cook for my family. I wanted so badly to order a pizza (like the old days, before gluten-free) but that isn't an option.

But soon it will be, at least for people living in Denver :-)

Anyway, I very much related to your story, Wendy. Count yourself lucky that you don't have a whole family of celiacs :-) And as for feeling better, I also respond so strongly if I get glutenized and it only takes a crumb. I went 15 years undiagnosed and then diagnosed myself after my son's were found to have celiac disease. I never come out positive on the antibody test. By blood sugar flucuates badly, from 90 to 150 and all points in between. I'm horribly tired all of the time. Though I can say that supliments help. I also started taking a b complex, sublingual vitamin. My nail ridges are going away, and the half moons near my cuticles are coming back. They used to be on my thumbs only. Now only 3 fingers are missing the half moons. I started noticing an improvement in just a week.

Celiac's I think are notoriously deficient in vitamins. This can cause all sorts of problems. I hate having to remember to take anything, but suppliments are worth the hassle. :-)

Anyway, I hope you will start feeling better soon. Personally, it too me about a year, or maybe two years, to feel confident about the foods I was eating being gluten-free. It's been five years for me. I still have little set backs. Times I don't feel great. Recently I was sure I was being contaminated but couldn't figure out by what. I was about convinced it was corn, and was feeling really depressed about having to give up yet another food group. After seeing my doc, I found it by problems were due to the onset of menopause! I was so relieved. I think it's common to blame any bad condition on gluten-free, but that is not always the answer.

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Wendy,

You're exactly correct about reactions becoming worse the longer you are gluten-free. That's extremely common. If you think about it, it makes sense; an untreated Celiac has almost no absorptive surface in their small intestine. As we heal, the absorptive surface becomes larger and larger, meaning that if we get a dose of Gluten, we get a HUGE dose for our immune systems to attack, making us sicker than before.

A few years ago, I had a slip-up that had me sick for an entire week! That's one of the biggest reasons why people who "fall off the wagon" think they can keep falling; the initial reaction when you slip up will usually be very violent, but further reactions will taper off if you continue to consume gluten, as the damage reaches a "stable point." (I.e., The destruction to the villi has become so extreme that almost no absorptive surface exists, therefore you're absorbing far, far less gluten to react to. )

Cheers,

-Pat

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