gluten-free Diet Confusion

[merbear]

I was diagnosed with celiac disease a month ago from blood work and biopsy. I'm thoroughly confused regarding my gluten-free diet. I've talked with my GI physician, dietician, and nutritionist. They each say different things regarding how strict my diet needs to be and what are the hidden sources of gluten.

I have no immediate symptoms, just anemia and a low weight. I have no headaches, poop issues, vomiting, DH, ...

The physician said to just stay away from big things(wheat, barley, rye), bread and things with wheat flour cause my villi isn't very damage.

The dietician and nutritionist say more hidden sources like HVP, HPP, anything with malt. But they have countering info regarding MSG, mono/diglycerides,seasonings, and liquor.

Celiac websites only confuse me more. Some saying to not eat dextrine, flavorings, food coloring, food starches,... and other sites don't mention any of these. Some sites say to not even eat out unless the restaurant is gluten-free and to even avoid foods that don't say any form of gluten in the ingredients incase the factory machines were dusted with flour.

I'm going back to college in a month. But it's in a very rural town where no one's heard of gluten let alone celiac disease. Maintaining my diet will be difficult. How strict do really need to be if I have no symptoms. The dietician said that even tiny,tiny fragments of gluten will cause damage and will ruin the whole diet. The physician said if i have a little gluten my intestines will still heal because I'm not as sensitive as people who have immediate, awful reactions to it.

All of these professionals telling me opposite info confuses and scares me. One says I'll be alright if I have trace amount of gluten, another says I'll get cancer, infertile, or sick. I'm pretty sure all these stress right now, is worse for me than eating gluten.

[RiceGuy]

Yes, any amount of gluten is a risk, so you do need to be 100% gluten-free, no exceptions. I've read that about 30% of those with Celiac are asymptomatic. That is, they don't notice any symptoms from ingesting gluten. However, the damage is still being done. If your intestines haven't been heavily damaged yet, be very thankful. Not everyone finds out gluten is harming them so soon. Remain 100% gluten-free, and you'll be better off than occasionally risking it at a questionable restaurant or with a questionable food product. You cannot ingest "just a little here and there" without the risk of intestinal damage, and the consequences it can bring (cancers, diabetes, hypothyroid, etc).

Many find that once they are gluten-free for a while, they become much more sensitive, and will react to much smaller amounts than they had before.

[Skylark]

Welcome to the board. I understand why you're worried. Unfortunately, there is no firm answer. Studies have been done and celiacs differ in their levels of intolerance to trace gluten. Doing as your doctor suggested and only avoiding obvious wheat is NOT going to let you heal. Do remember that your doctor can do a followup biopsy and double-check that the diet is working for you.

You need to stick to the information provided by your dietitian. They're much better than doctors as far as managing celiac. You do need to be reasonably strict, and avoid all gluten ingredients in foods.

As far as specific ingredients, keep reading and you will learn the ins and outs. MSG is usually made with bacteria in the US, and if it is from wheat the wheat has to be declared on the label. Wheat also has to be declared with dextran, food starch, MSG, and HVP. Malt is always gluten. Mono- and diglycerides are safe, as they are made from oils and fats, not wheat. Pure seasonings (like a bottle of crushed oregano) are fine. Seasoning mixes often contain flour and you have to read the label. This is a problem at restaurants. As far as liquor, beer and malt liquor are never safe. Most celiacs tolerate double or triple-distilled whiskey and other spirits, as gluten in the mash doesn't come through the distillation. A few find it makes them sick, though.

Avoiding foods from facilities that process wheat is usually not necessary, but it depends on your body. For example, some people around here find they react to the gluten-free rice chex, while others eat them fine. As a general rule, the less processed food you eat, the less gluten you eat inadvertently.

Eating out is problematic. After getting sick over and over again in small ethnic restaurants and "mom and pop" restaurants I've gotten very selective about where I eat. I only eat at places with a gluten-free menu or "high-end" places with a trained chef who knows what gluten is.

[lilbit]

I was diagnosed this summer and it DOES get easier- I-Phone has an app called is this gluten free you might want to try. As far as eating out, I made a binder of gluten free menu items from local fast food and resturants in my area and I leave it in my car. That way if I'm out, I know what's safe to eat.

I'm curious how you ended up diagnosed with no symptoms- so many people suffer for so long without answers- I'm being nosy so you can just tell me to be quiet

[nutzieone]

I agree with what everyone has said. the dietitian is probably the one to listen to. In the UK we have a charity called Coeliac UK which is very helpful and provides you with a small book which gives details of foods you can/can't eat. This directory is updated every month and when a member you get emails routinely also. I see the gastroenterologist yearly to check bloods, and just see how I'm doing but it is the dietitian and my GP that help the most with ongoing celiac disease treatment. At the end of the day you should avoid gluten all of the time and not just when you think you will be okay eating something as you are just asking for trouble. You are very luck not not be affected too bad by gluten but you could be setting yourself up for disaster if you continue eating gluten following being diagnosed with celiac disease. Even if you dont have symptoms you are doing your body harm and you must avoid gluten at all costs. I am curious too how you were diagnosed with no symptoms as it seems odd to be tested for it but not having a reason to check for it. I had nearly every test available before they finally tested for celiac disease which thankfully was positive!

Good luck

Annette

[merbear]

I was tested because ever since I started college, I haven't been over 100 lbs. I'm only 5'2 so I don't look sickly thin but I just want to be at a healthier weight. My doctor just tested for a bunch of stuff because I kept badgering her that this wasn't just anemia.

I can try and be super-good and call manufactures and not eat out or at friends places, but I'm going to be living with 3 girls in a house with a small kitchen. Im sure I will be get some kind of cross comtamination. Im just wondering if i'll get worse, stay the same or improve slower with that happening.

btw I dont trust everything the dietician said cause her info packet was a few years old and had some false info. Like gluten was in oats, sushi rice, and sweet rice.

Thanks for all your help. I dont know anyone was celiac disease, thats been diagnosed atleast

[Skylark]

Gluten IS on oats, unless they are grown and harvested super-carefully. Wheat sprouts in oat fields all the time, and the grains are virtually identical and cannot be separated. Even with certified gluten-free oats, 10-15% of celiacs don't tolerate them. The medical recommendation is that celiacs who eat oats should go back for another biopsy once they're added to the diet to be sure they're not doing damage.

Sweet and sushi rice are OK.

Here's the thing. The low amount of damage isn't as trivial as your doctor makes out. Autoimmune disorders are progressive and you're young with your whole life ahead of you. Anemia isn't good for you and many celiacs end up with osteoporosis and thyroid trouble. Don't mess up your body by being cavalier about your celiac.

[T.H.]

Sorry you don't feel like you can trust the dietician. That is just a frustrating place to be. I'd definitely say that it's good to make sure your information is up to date. Knowledge about celiacs is still being discovered, so even a couple years can make a big difference. I was only diagnosed a year ago and some information has changed from what my first dietician told me to what new research is finding that I've been reading on the internet. (I have a better dietician, now)

For the gluten issue - was the packet saying not to eat oats, sushi rice, and sweet rice? Or was it saying they had gluten inherently? I believe these three CAN be gluten contamination issues, especially oats. That gets contaminated so often you need to find gluten-free oats to be safe.

The sushi rice and sweet rice might have the same issues that many asian foods have - if they are processed in an asian country or with other asian foods. There are SO many foods made with gluten for asian products that cross contamination might be more of a risk.

I must admit, hearing what your doctor told you makes me kind of ticked off on your behalf. He doesn't seem like he's informed, and to give out information that could damage you due to ignorance? Well, wish he knew better, or that he would ask someone who DOES know better.

I kind of see it this way. If we eat a little gluten, or just get a 'little' damage, well, that's still damage. That's like getting a razor and cutting our arm with just a few slices. And then doing it again, and again, and again in the exact same place, every few days, for the rest of our lives.

No way in the world would we say that's a good thing, or that it won't make a difference to our skin. We don't fully heal, ever. And frankly, healing our ability to digest our food is a LOT more important than a few places on our skin, especially when they are finding that many of us don't heal back up all the way. Docs don't know why yet, far as I know.

Also, something he doesn't seem to have mentioned is that whenever you get damage, you are immuno-compromised for a few days to a couple weeks. You'll get sick more often that way. You're more likely to get serious illnesses that way. And small illnesses have a chance to become much worse than they usually would as a result as well. Like catching the flu when you're immuno-compromised might result in your getting bronchitis or pneumonia, that sort of thing.

On that front, I can honestly say, been there, done that, have the t-shirt, wouldn't recommend it.

I hope that you are able to find a way to deal with this new diet and college so that you are healthy, and happy, and that you have wonderful and understanding roommates!

I was tested because ever since I started college, I haven't been over 100 lbs. I'm only 5'2 so I don't look sickly thin but I just want to be at a healthier weight. My doctor just tested for a bunch of stuff because I kept badgering her that this wasn't just anemia.

I can try and be super-good and call manufactures and not eat out or at friends places, but I'm going to be living with 3 girls in a house with a small kitchen. Im sure I will be get some kind of cross comtamination. Im just wondering if i'll get worse, stay the same or improve slower with that happening.

btw I dont trust everything the dietician said cause her info packet was a few years old and had some false info. Like gluten was in oats, sushi rice, and sweet rice.

Thanks for all your help. I dont know anyone was celiac disease, thats been diagnosed atleast

[Aphreal]

I am new to this too and basically it's a trial and error. It seems you might could go gluten light but you won't know till you try it. With me. It's all or nothing but I have all those things you don't. Thankfully you don't!

[cassP]

I was tested because ever since I started college, I haven't been over 100 lbs. I'm only 5'2 so I don't look sickly thin but I just want to be at a healthier weight. My doctor just tested for a bunch of stuff because I kept badgering her that this wasn't just anemia.

I can try and be super-good and call manufactures and not eat out or at friends places, but I'm going to be living with 3 girls in a house with a small kitchen. Im sure I will be get some kind of cross comtamination. Im just wondering if i'll get worse, stay the same or improve slower with that happening.

btw I dont trust everything the dietician said cause her info packet was a few years old and had some false info. Like gluten was in oats, sushi rice, and sweet rice.

Thanks for all your help. I dont know anyone was celiac disease, thats been diagnosed atleast

ok, merbear- listen to your dietician! & do your research- i like all the replies here- esp. skylarks-

you definitely need to do your diet 100%- even tho you dont feel gut symptoms- you could end up with cancer or heart disease. not trying to scare you- but this is the reality. dont freak out if you get CC once in a while- it happens... but give it your all- this is very serious- even if you're not having an irritable bowel!

AND- in the beginning i was confused too- because i had read that sushi rice (which i LOVE) was glutinous.... but then i learned that it's only an used as an adjective- explaining that the sushi rice is STICKY like gluten- but it doesnt have any. but stay away from Soy Sauce!!!! there's gluten-free soy sauce- you'll have to ask for it OR bring your own.

dont stress- you can do this- we all understand & can help

[Skylark]

I am new to this too and basically it's a trial and error. It seems you might could go gluten light but you won't know till you try it. With me. It's all or nothing but I have all those things you don't. Thankfully you don't!

There is no such thing as gluten light with bloodwork/biopsy diagnosed celiac disease. The autoimmune reaction happens from even small amounts of gluten even if the damage doesn't cause symptoms. As I mentioned before, autoimmunity tends to be progressive and the silent malabsorption causes anemia, vitamin deficiencies, and often osteoporosis.

[vbecton]

Hi merbear & welcome. I'm 3 months into this diet and I can tell you I wasn't very reactive to wheat or gluten before. I just had sporadic bowel issues. My real issue was NOT in my gut (so to speak), but my chronic low blood sugar and low vitamin levels. The blood sugar finally got so out of control I demanded answers and went to every doctor I could to get that answer. Going gluten-free "cured" my low blood sugar, but now I'm so sensitive to gluten that even looking at it makes my intestines panic .

There is so much misinformation out there on Celiac from the "professionals." This sight has the real professionals;) ...the ones who live with Celiac, or gluten intolerance and know the effects. Each one of us reacts differently. Stick with whole, fresh foods that are naturally gluten free. Stay away from most processed foods until you learn the ins and outs of where gluten lurks. I did the Paleo diet in the first month just because it's naturally gluten free because reading labels was WAY too overwhelming for me!!

I went to Chili's last night (my son was STARVING after his flight). I had no intentions on eating there. They do have a gluten free menu, but I still don't trust them. Well, the waiter talked me into trying the chicken & cilantro soup. Umm, yummy! And, I didn't pay for it later. Eating out is always a risk! But, sometimes to be normal the risk is worth taking as long as you explain your situation....but, aim for restaurants with gluten-free menus. Also, I bought some "dining out cards" online and those have helped. They will explain to the chef what you can't eat and help them to know what ingredients are safe. I bought the ones in 8 different languages that speak directly for each type of cuisine.

Good luck! Come here with all your questions. Someone always knows the answer!!

[sahm-i-am]

Hang in there, merbear! I, too had no symptoms that were typical. I had chronic anemia, not fixed by iron infusions and then they diagnosed me with lymphoma. Not accepting that diagnosis I demanded the Celiac test, even though I didn't react to gluten the normal way. My body was reacting actually, just in the form mimicking lymphoma. Anyway, I started the gluten-free diet 3 months ago and it has been a roller coaster! The learning curve is manageable, but hard. Lots of good advice on here though. I recommend keeping a food diary and your reactions to what you eat, even if it is nothing. I have done this so when I go back to dr/dietitian we can pinpoint problems easier. When I started gluten-free I had no stomach issues, but boy have they cropped up now. Not to alarm you, but it may happen. Sometimes I wish I had never started gluten-free or wonder if this is the right diagnosis, but if my intestines are healing and I'm absorbing nutrients and gaining weight I guess that is all I can ask for. Same for you - your goal is to gain weight and be healthy.

Going to college with 3 roommates will be tough, but maybe hold a mini-gluten session for them over dinner or something. Let them know about your issues, but always be diligent about wiping counters before and after, wash your hands ALOT, and label your food clearly. Keep your food on the upper shelves so their crumbs don't fall down on yours. Don't share a jar of peanut butter with them. Crumbs from their bread will get into it and then get on yours. Also, check your toothpaste and lotions and soaps - my Tresemme contains gluten as does my Bath and Body Works White Citrus body butter! Boo Hoo!

Read, read, read merbear! It will get easier and you will get smarter. Email me if you need encouragement or support. Oh, and does your college have a dietitian on staff? Most do, if so go talk to them. And I bet if you ask around, put out notices, you will find other students/people in the area - who knows? You could start your own support group on campus!

[BRUMI1968]

Gluten IS on oats, unless they are grown and harvested super-carefully. Wheat sprouts in oat fields all the time, and the grains are virtually identical and cannot be separated. Even with certified gluten-free oats, 10-15% of celiacs don't tolerate them. The medical recommendation is that celiacs who eat oats should go back for another biopsy once they're added to the diet to be sure they're not doing damage.

Sweet and sushi rice are OK.

Here's the thing. The low amount of damage isn't as trivial as your doctor makes out. Autoimmune disorders are progressive and you're young with your whole life ahead of you. Anemia isn't good for you and many celiacs end up with osteoporosis and thyroid trouble. Don't mess up your body by being cavalier about your celiac.

sushi rice is okay if you're buying it uncooked, but there might be a problem if you're eating sushi out at a restaurant. I used to eat at a great sushi place b4 being diagnosed. Then I was diagnosed, and I asked them about a few things. Some of the sushi rice prepared has vinegar or rice in it - anyway, there was a language barrier, but I felt very uncertain that prepared sushi rice was safe at a restaurant.

[Marz]

Just wanted to say well done for insisting it "wasn't just anaemia"! You've saved yourself a whole host of serious problems that you could've picked up later on

It is frustrating that the doctors and dieticians are on separate pages regarding celiac disease. It's the same here - My nutritionist is super-anti-gluten-don't-even-think-about-eating-oats! And the doctors are "well, your bloodwork is negative, so maybe just stay wheat-light and you should be fine".

I agree what the others have said regarding trace amounts of gluten, I've also become more sensitive to it since going gluten-free.

A tip for sharing a kitchen - explain to your roomates what it means to have celiac disease, and ask them to keep a portion of the kitchen gluten-free. Then you at least have a safe counter top to work on, where you can't accidently pick up bread crumbs etc. You might want to keep a separate toaster (breadcrumbs), spoons (if plastic, gluten can stick like crazy), pans (non-stick pans, ditto last comment).

Good luck with staying gluten-free at college!

[Skylark]

sushi rice is okay if you're buying it uncooked, but there might be a problem if you're eating sushi out at a restaurant. I used to eat at a great sushi place b4 being diagnosed. Then I was diagnosed, and I asked them about a few things. Some of the sushi rice prepared has vinegar or rice in it - anyway, there was a language barrier, but I felt very uncertain that prepared sushi rice was safe at a restaurant.

Sushi rice is prepared with rice wine vinegar, sugar, and salt. None of those are an issue for people with celiac.