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obaketenshi

Not Convinced Everything Is "normal"

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So, after a bout of food poisoning (???) that I am still sick from, even though it happened in APRIL, I went to the doctor finally. She had blood and stool tests done, and looked for Celiac too, as I have the genetic component (my father may be, and has other food allergies). But they called and said everything was "normal". I demanded a followup before they fob me off on a gastroenterologist because I want to know the numbers, but I haven't went yet, because the holiday is coming. I am NOT convinced that this is normal, and have suspected celiac for a while.

Some background, I was born lactose intolerant, allergic to salicylates (aspirin and derivatives), and have chocolate as a strong migraine trigger. My father is allergic to corn, soy, and wheat,though I am unsure about celiac, it seems likely.

For nearly all of my adult life, I've had diarrhea problems, sometimes as frequent as 4/5 times I go, usually explosive and what me and my SO describe as a "POO NOW!!!11" moment. Its bothersome, and prohibits me being able to travel very far if I don't know a bathroom will be handy. Cutting out milk reduces the frequency, but it doesn't go away completely, and stool is still floating and slimy, and smells bad. Taking lactose tablets does absolutely zero for it if I have milk, though it used to. Last summer I had a rash around my mouth that wouldn't go away, and is still faintly there, even after topical and steroid treatments. I've gotten intolerable iching on my hands and wrists primarily, so badly that it feels like if I could scratch the flesh underneath it wouldn't go, which has led to some scarring on my hands. I get migraines often, sometimes as frequently as several times a week, though I never go a month without one. A lot of the time I feel like I'm in a fog, and some days I'm just like a zombie, totally out of it, unable to think fast, or at all. This has combined with weight gain (yeah yeah, fat celiac? -_-), no matter how much/little I eat, and regardless of physical activity. I am tired all the time, and some days no amount of stimulants such as caffiene even brush it. I am so sick of being inside I could cry.

Lately, the last....5-6 years, I've gotten sick repeatedly with other things, colds, infections, food poisoning. All of them kill my appetite to the point where I am unable to tell when I'm hungry until I'm starving, accompanied by nausea which doesn't help at all, with flourishes of diarrhea each time. But I don't seem to recover from the gastrointestinal symptoms until MONTHS after the original sickness passes. My most recent sickness happened in April, and I am still miserable. My GP says that some things that we interpret as food poisoning isn't, and I wonder now. I've had 5 cases where I've been so sick that I've been tied to the bathroom, vomiting, diarrhea, unable to eat or drink anything. I thought that was food poisoning, but I don't know anyone whose had it that bad more than once or twice.

What should I do when I go to the doctor for the followup? It doesn't seem like it could be Colitis or Crohn's to me. One of the reasons that I am concerned is that my insurance is not very good, and I may not be able to afford to have a biopsy or anything like that done. And I'm concerned that I won't be able to afford to eat gluten free either. I guess I'm having trouble really dealing with all this.

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Obaketenshi, Sorry you're having trouble. Hang in there...you'll get it figured out.

Several things:

All of your symptoms are strongly suggestive of celiac, but you know that already.

First, by law you are allowed copies of your test results, so don't give up. When you get the blood test results, make sure that they give you the "reference ranges". In other words, they say tTG is 25 - that's not helpful. They need to give you the range for normal (say 0-15) and high (20+) and perhaps "borderline" of 15-20. Every lab is different and may give different ranges. Then come back here and post your numbers.

If you don't have insurance and are worried about the cost, you don't need to go to the GI and an endoscopy -while it is the "gold-standard" for diagnosis- is always optional. If you try gluten-free and get better, you can count that as your diagnosis. If you still have issues, then you might need to be screened for Crohns or colitis. Or you may have other intolerances.

Go strictly dairy free for 3-6 months regardless. Many celiacs are not just lactose sensitive but "casein intolerant". Lactaid only works if one is lactose sensitive but there are no pills if you are sensitive to casein. Casein intolerance, to my understanding, is permenant while lactose intolerance may go away when a celiac heals.

Don't let anyone tell you that overweight people can't have celiac. There's a study that people have posted before that indicates that, at diagnosis, 40% of patients are overweight.

I doubt that you had food poisoning. I had a similar event - the first ever - that sent me to the doc for my endoscopy and subsequent diagnosis.

Finally, don't stress about eating gluten-free and the cost. For one thing, if you feel better it'll seem worth it. But mainly because it doesn't have to be more expensive. Are you in the US, UK, somewhere else? Eating gluten-free starts with naturally gluten-free things like rice, corn, potatoes, meats, veggies, fish, eggs, olive oil, fruits. If you start your gluten-free diet by eating these, you'll get healthier faster. Where gluten-free eating is expensive is adding in treats, which - when store bought - aren't always as tasty or as nutritious as their gluten counterparts. Don't start off with pre-made gluten-free treats but after a while try a few. Your taste buds need to forget the old taste of gluten cookies, bread, pizza and it will give you a chance to learn how to cook gluten-free.

If you don't cook, you could learn or you will be stuck buying a lot of pre-made gluten-free treats, which are expensive. Baking your own gluten-free bread, cookies, pizza etc can be healthier, cheaper and taste better. gluten-free flours are expensive but look for sales.

Gluten-free pastas (made of combos of rice, quinoa, potato, soy flours) can be expensive, so stock up when they're on sale.

You can get things like tortilla chips, potato chips and candy bars that are gluten-free already like Snickers, Reeces Peanut butter cups, some Doritos, Fritos etc.

You'll learn what mainstream products are gluten-free, like Hormel chili, some Progresso soups, some/most Ore-Ida french fries etc... and you can shop sales to buy things.

You'll learn what ready-made products may not be safe (some frozen dinners, many snack items) and find your own substitutes.

Always read labels and use companies toll-free numbers or websites to research products before buying them. Post questions here.

Again, don't give up. It gets easier. You'll get more energy, feel less nauseaous, stop the explosive D. Your rashes should go away in time. All good things.

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Even if test results come back negative you could try a gluten free diet. You could have what they call non celiac gluten intolerance. I used to have uncontrollable diarrhea before diagnosis too. It went away within 24 hours of cutting out cereal and bread.

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Sounds like celiac to me too. I had that diarrhea too and mine went away after a week on an elimination diet. The hallmark of dermatitis herpetiformis is "scratch your skin off" itching.

You have a right to get your diagnostic test results. Sometimes it's easier to go to the front desk and ask for a copy of them instead of from the doctor.

As Cyberprof says, you don't need any formal diagnosis to go gluten free. I started the diet in grad school and I didn't have any money either. It's only the specialty gluten-free foods that are too expensive. Rice and potatoes are cheap, and whatever fruits and vegetables you were eating will all be fine. I also eat Mission brand corn tortillas sometimes. Plain meat you cook yourself is fine too, as are many lunch meats and sausages. I often make big pots of soup from dried beans and freeze servings to take to work.

I agree that going dairy free at first is a good idea. The good news is that even casein intolerance is not permanent. I couldn't eat cow dairy when I first went off gluten but goat was OK. It wasn't lactose intolerance, but rather a sensitivity to cow casein. Now I can eat it fine.

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Obaketenshi, Sorry you're having trouble. Hang in there...you'll get it figured out.

Several things:

All of your symptoms are strongly suggestive of celiac, but you know that already.

First, by law you are allowed copies of your test results, so don't give up. When you get the blood test results, make sure that they give you the "reference ranges". In other words, they say tTG is 25 - that's not helpful. They need to give you the range for normal (say 0-15) and high (20+) and perhaps "borderline" of 15-20. Every lab is different and may give different ranges. Then come back here and post your numbers.

If you don't have insurance and are worried about the cost, you don't need to go to the GI and an endoscopy -while it is the "gold-standard" for diagnosis- is always optional. If you try gluten-free and get better, you can count that as your diagnosis. If you still have issues, then you might need to be screened for Crohns or colitis. Or you may have other intolerances.

Go strictly dairy free for 3-6 months regardless. Many celiacs are not just lactose sensitive but "casein intolerant". Lactaid only works if one is lactose sensitive but there are no pills if you are sensitive to casein. Casein intolerance, to my understanding, is permenant while lactose intolerance may go away when a celiac heals.

Don't let anyone tell you that overweight people can't have celiac. There's a study that people have posted before that indicates that, at diagnosis, 40% of patients are overweight.

I doubt that you had food poisoning. I had a similar event - the first ever - that sent me to the doc for my endoscopy and subsequent diagnosis.

Finally, don't stress about eating gluten-free and the cost. For one thing, if you feel better it'll seem worth it. But mainly because it doesn't have to be more expensive. Are you in the US, UK, somewhere else? Eating gluten-free starts with naturally gluten-free things like rice, corn, potatoes, meats, veggies, fish, eggs, olive oil, fruits. If you start your gluten-free diet by eating these, you'll get healthier faster. Where gluten-free eating is expensive is adding in treats, which - when store bought - aren't always as tasty or as nutritious as their gluten counterparts. Don't start off with pre-made gluten-free treats but after a while try a few. Your taste buds need to forget the old taste of gluten cookies, bread, pizza and it will give you a chance to learn how to cook gluten-free.

If you don't cook, you could learn or you will be stuck buying a lot of pre-made gluten-free treats, which are expensive. Baking your own gluten-free bread, cookies, pizza etc can be healthier, cheaper and taste better. gluten-free flours are expensive but look for sales.

Gluten-free pastas (made of combos of rice, quinoa, potato, soy flours) can be expensive, so stock up when they're on sale.

You can get things like tortilla chips, potato chips and candy bars that are gluten-free already like Snickers, Reeces Peanut butter cups, some Doritos, Fritos etc.

You'll learn what mainstream products are gluten-free, like Hormel chili, some Progresso soups, some/most Ore-Ida french fries etc... and you can shop sales to buy things.

You'll learn what ready-made products may not be safe (some frozen dinners, many snack items) and find your own substitutes.

Always read labels and use companies toll-free numbers or websites to research products before buying them. Post questions here.

Again, don't give up. It gets easier. You'll get more energy, feel less nauseaous, stop the explosive D. Your rashes should go away in time. All good things.

Thank you so much, that definitely helps. I am sorry for the slow reply. I am taking the slow route out and basically using up everything that has gluten, and thereafter it will no longer live in the house, as a way to help myself psychologically transition while I wait for the next appointment for my results. Though with the ITCHY, I am tempted to throw in the towel right now and just go cold turkey.

I THOUGHT there was a law about getting records, thank you for confirming.

I did specifically go to the store to shop and eliminated anything that had wheat from being bought, and was surprised that the pattern of my shopping doesn't change that much, except to shift from wheat things to rice things. It is lucky that it is summer and I won't mind very much to switch to mostly fruits and veggies during this time! Its harder for me to arrange it with my husband, because I REALLY don't want to have to do the "my food, your food" thing, because it got on my nerves as a kid, and still does now.

I am lucky enough to have a large population of people from Asia and the Middle east here in the Detroit area, and I already shop at those stores, so it was a bit easier to choose alternatives. I cook a lot of my own food, though I do tend to go out to eat and I am still unsure how to handle that with any tact.

I am still finding the "things that contain gluten" lists a bit confusing, is it better to eliminate anything on the "maybe" lists on the off chance? I am finding the list hard to memorize, and since even the smallest bit of it can make me sick its important I know what to look for in some packaged foods.

I am sad about the milk though, but I'll manage. That might actually be a bit harder than the wheat in weaning off of. I thought casein and lactose were the same, but I guess I must have been mistaken.

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Lactose is the sugar component of milk, casein is the protein in milk. They are digested by different enzymes :)

To transition to a gluten free diet it is usually much easier to eat a whole foods diet and try to avoid the processed foods, except perhaps for things like gluten free pasta and perhaps some bread. Eat unprocessed meats, vegetables, fruits, rice, nuts, seeds, etc. Make your own sauces (for white sauces you can use rice, almond, hemp or soy milk. Be careful of Rice Dream though - it is processed with barley although they claim it is gluten free.) That way you don't have to obsess at first if there is gluten in something. And it will help you heal faster to avoid the risk of cross-contamination. Also, limit your eating out until you get the hang of the diet, know where gluten hides, and what questions to ask of your waitperson / restaurant manager / chef.to make sure your food is gluten free.

If you do the cooking at home, it would be really good if your husband joined you in eating gluten free at home - he could eat all the gluten he wanted when away from home, and since most food is naturally gluten free anyway .... If he insists on his gluten in the house he will need a separate place to store it and a separate place on the counter for its preparation. You cannot use the same toaster or colander or wooden utensils, or scratched non-stick cookware.

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Thank you so much, that definitely helps. I am sorry for the slow reply. I am taking the slow route out and basically using up everything that has gluten, and thereafter it will no longer live in the house, as a way to help myself psychologically transition while I wait for the next appointment for my results. Though with the ITCHY, I am tempted to throw in the towel right now and just go cold turkey.

I THOUGHT there was a law about getting records, thank you for confirming.

I did specifically go to the store to shop and eliminated anything that had wheat from being bought, and was surprised that the pattern of my shopping doesn't change that much, except to shift from wheat things to rice things. It is lucky that it is summer and I won't mind very much to switch to mostly fruits and veggies during this time! Its harder for me to arrange it with my husband, because I REALLY don't want to have to do the "my food, your food" thing, because it got on my nerves as a kid, and still does now.

I am lucky enough to have a large population of people from Asia and the Middle east here in the Detroit area, and I already shop at those stores, so it was a bit easier to choose alternatives. I cook a lot of my own food, though I do tend to go out to eat and I am still unsure how to handle that with any tact.

I am still finding the "things that contain gluten" lists a bit confusing, is it better to eliminate anything on the "maybe" lists on the off chance? I am finding the list hard to memorize, and since even the smallest bit of it can make me sick its important I know what to look for in some packaged foods.

I am sad about the milk though, but I'll manage. That might actually be a bit harder than the wheat in weaning off of. I thought casein and lactose were the same, but I guess I must have been mistaken.

Sounds good. Let us know if you have more questions.

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Its not so much that my husband is against it, as I am not familiar with how to cook gluten free things that will feed two people just yet. He doesn't know how to cook really, so I am left with the task. He may be eating out of cans for a while while I figure it out. I did buy a large turkey which will provide a meat source for a while (19.8 pounds! O_O) and I have some pork loin and chicken. I bought a lot of veggies too. Rice noodles, though I'm not sure now how to make them tasty, as all the condiments I'd normally put on them contain gluten. I'd have eased into this like I said I would, but the itching has me concerned, and I don't think its unrelated.

A lot of the things that would require firing up the stove or otherwise heating up, don't taste good cold. I am unfortunately very finicky in the summer to eat things that are room temperature or colder because I have trouble sweating (related maybe? I never thought of that...) and I overheat easily. I suppose I could find some corn tostadas or something to use in lieu of bread for now. This will be MUCH easier when it comes to be cooler.

So, tell me more about the scratched non-stick things and plastic cutting boards. Is there any way to decontaminate them? Because that is unfortunately pretty much all of my cookware, and I definitely don't have enough money to replace it all. :/

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Okay, as you know, gluten is a very sticky substance, and there are some things you just cannot get it out of. Toasters hold crumbs forever and you really need a new one and keep it gluten free. Same for a colander. It is impossible to get the gluten out of all the little holes. Scratches in pans also harbor gluten, as do wooden and scratched plastic utensils and cutting boards. So you really need, at a minimum, new toaster, new colander, one new wooden spoon, one new cutting board, and (if you don't have a steel or aluminum one) one new skillet of your choice. As time and money permits you can add to this list, but use only the new ones for cooking gluten free and don't let gluten touch them. If you have a cast iron skillet, you can decontaminate it by putting it in the oven and running the clean cycle, then scrub it out and reseason.

You can find gluten free brown rice wraps to make sandwich type things. If you have one near you, Trader Joe's has them. Dip them in a little warm water to soften them and make them more pliable.

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Sounds like a trip to IKEA then to replace my cooking mats! My plastic utensils are thankfully not scratched, so they're ok.

Right now, a new toaster isn't an issue, because its summer, but it will be once its winter, and its old anyway, so I'm not too worried about it. I think my skillet is ok, it doesn't have any scratches on the nonstick coating. And a colander, which I need a new one anyway, would a metal colander be better for this? My boiling pots are pretty useless for this then, but I have a separate iron pot already. I spent some time today cleaning out all the wheat things and stuff that contains gluten and put it in a box. I'm not sure what to do with it yet, let my husband eat it, or give it to someone/donate it. I think I know of the rice wraps, I'll have to mine Trader Joes for its stuff! I think I am ok for groceries for now tho.

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Its not so much that my husband is against it, as I am not familiar with how to cook gluten free things that will feed two people just yet. He doesn't know how to cook really, so I am left with the task. He may be eating out of cans for a while while I figure it out. I did buy a large turkey which will provide a meat source for a while (19.8 pounds! O_O) and I have some pork loin and chicken. I bought a lot of veggies too. Rice noodles, though I'm not sure now how to make them tasty, as all the condiments I'd normally put on them contain gluten. I'd have eased into this like I said I would, but the itching has me concerned, and I don't think its unrelated.

A lot of the things that would require firing up the stove or otherwise heating up, don't taste good cold. I am unfortunately very finicky in the summer to eat things that are room temperature or colder because I have trouble sweating (related maybe? I never thought of that...) and I overheat easily. I suppose I could find some corn tostadas or something to use in lieu of bread for now. This will be MUCH easier when it comes to be cooler.

So, tell me more about the scratched non-stick things and plastic cutting boards. Is there any way to decontaminate them? Because that is unfortunately pretty much all of my cookware, and I definitely don't have enough money to replace it all. :/

A suggestion- if you don't live in a city or do live in a city that doesn't have stringent burn laws, little charcoal grills can be had for about $20 that make some mean grilled meats.

One of my favorites is simply chicken breasts, brushed with olive oil and thrown on the grill. Serve with brown rice and a nice salad or steamed veggies. If you must have more flavor, marinate in tamari (Japanese soy sauce- traditionally is gluten free but check the label because cheaper ones still sometimes have it... San-J tamari is for-sure safe) before you grill it.

Easy dinner! Most of my dinners are variations on this theme: some sort of marinated grilled or baked meat (mostly chicken and fish), brown rice, and one or two kinds of veggies. It's filling and wholesome- tonight I'm doing salmon.

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I am sad about the milk though, but I'll manage. That might actually be a bit harder than the wheat in weaning off of. I thought casein and lactose were the same, but I guess I must have been mistaken

Hi obaketenshi,

I also tested positive for casein antibodies. I was off dairy for over two years. I don't know what the laws regarding buying raw milk are in Michigan, but I found just in the last couple months that I can handle raw milk products with no issues at all. Pasteurized dairy products still produce the same reaction (projectile vomiting, very ill) as before whereas raw milk products produce no reaction whatsoever. However I would strongly suggest you wait for a least a year of being successfully gluten/casein free before you even think about testing this if you so choose as your body will probably need at least that amount of time to heal.

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