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New At This, And A Little Frightened To Eat


Silvane

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Silvane Newbie

So, recently I learned it's very, very likely that I have gluten intolerance, if not celiac disease. Yesterday, in fact. I'm in college, and was getting tested for learning disabilities by a developmental psychologist, who went over the common symptoms list. I had most of them (constipation/diarrhea, Keratosis Pilaris, stomach aches and intestinal pain, joint pain, lactose intolerance, headaches, etc) on top of high correlation between gluten intolerance and ADD, which I apparently have. I was advised to get off gluten posthaste, which I'm all too happy to do, since as I'm sure you know, the symptoms are god awful.

That leaves me with the question: what do I eat? I've got a box of gluten free cereal and bag of gluten free bagels, and the cafeteria has some gluten free options, but that's it. I'm not sure what I can eat, and I'm a little afraid to try processed food for fear of missing gluten. I've got access to two grocery stores, but no health food stores unless I make a day of it and drive over to the next town. Please advise. I appreciate any help I can get on this.


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mushroom Proficient

Hi, and welcome Silvane. Is there any chance, whilst you are still eating gluten, that you can get a doctor to order the celiac blood testing panel for you? I guess if you have insurance through the school they won't do this. Do you have insurance that would cover such testing or parents who might pay for it? I ask this because to be tested for celiac you do need to still be eating gluten, otherwise your body will stop making the antibodies that the testing measures. Most people find it is good to know whether or not they actually have celiac disease rather than gluten intolerance. If you wanted to be tested later you would have to go back on gluten for a minimum of two months, and most people don't make it through the two month gluten challenge, it is just too painful. So let us know. If you are going to go gluten free we will help you now, or after the testing if that's what you decide.

Silvane Newbie

Hi, and welcome Silvane. Is there any chance, whilst you are still eating gluten, that you can get a doctor to order the celiac blood testing panel for you? I guess if you have insurance through the school they won't do this. Do you have insurance that would cover such testing or parents who might pay for it? I ask this because to be tested for celiac you do need to still be eating gluten, otherwise your body will stop making the antibodies that the testing measures. Most people find it is good to know whether or not they actually have celiac disease rather than gluten intolerance. If you wanted to be tested later you would have to go back on gluten for a minimum of two months, and most people don't make it through the two month gluten challenge, it is just too painful. So let us know. If you are going to go gluten free we will help you now, or after the testing if that's what you decide.

Possibly. It's more a matter of when and where than cost. How quick does your body stop producing antibodies, do you know? If I get tested in the next two weeks, even if I quit eating gluten, would I still have antibodies in my system? I'm clinging to passing grades by the skin of my teeth, due to a combination of factors (Depression, Irilan's syndrome, ADD) and going off gluten is suppose to help with the depression and ADD. I really need that help. I'd like to start immediately, if that's possible, but on the other hand, the gluten challenge sounds godawful. I'd rather take a bad semester than permanent damage to my intestines.

wheeleezdryver Community Regular

here are some ideas of basic gluten free items (and anyone correct me if I'm wrong):

Chex & Kix Cereal. i've heard that Pebbles cereal either is or will be soon. Envirokids Cereal (I've started seeing them in Walmart)

eggs

fresh produce

dried fruit, except dates

Most canned or frozen fruits & vegetables (as long as nothing else is added!)

meats that don't have added fillers

milk

most cheese, excluding blue cheese

plain cream cheese

cottage cheese

some yogurts, like Yoplait or Light & Fit, are labeled gluten free.

most plain or only salt added nuts & beans should be okay (although I'd be wary of bulk bins due to risk of cross contamination)

most puddings & Jellos (name brands are pretty good about labelling)

Kozy Shak rice puddings/ tapioca

Hope that helps a little bit.

mushroom Proficient

Possibly. It's more a matter of when and where than cost. How quick does your body stop producing antibodies, do you know? If I get tested in the next two weeks, even if I quit eating gluten, would I still have antibodies in my system? I'm clinging to passing grades by the skin of my teeth, due to a combination of factors (Depression, Irilan's syndrome, ADD) and going off gluten is suppose to help with the depression and ADD. I really need that help. I'd like to start immediately, if that's possible, but on the other hand, the gluten challenge sounds godawful. I'd rather take a bad semester than permanent damage to my intestines.

You would probably be able to get by with one week but two weeks is really iffy :( I know you want to do well in your finals and make that passing grade, but... are you in some place where you can't get it done? And can you get some prescription help with the depression in the meantime?

On the other hand, if it doesn't matter to you (and it didn't to me - I am self-diagnosed) you can go gluten free right away and feel better, hopefully. :) I am not twisting your arm, just letting you know your options. It is possible even with the testing that it could be negative, and that you are a gluten intolerant rather than a celiac, and then that two weeks would have been wasted weeks when you could have been feeling better. It is your life and you have to decide for yourself what you need.

color-me-confused Explorer

Possibly. It's more a matter of when and where than cost. How quick does your body stop producing antibodies, do you know? If I get tested in the next two weeks, even if I quit eating gluten, would I still have antibodies in my system? I'm clinging to passing grades by the skin of my teeth, due to a combination of factors (Depression, Irilan's syndrome, ADD) and going off gluten is suppose to help with the depression and ADD. I really need that help. I'd like to start immediately, if that's possible, but on the other hand, the gluten challenge sounds godawful. I'd rather take a bad semester than permanent damage to my intestines.

I have adult ADD. Going gluten-free definitely did relieve some level of brain fog and distractibility after just a few days, although I definitely, 100%, still have ADD. The greater energy throughout the day and reduced caffeine intake also had a positive cognitive effect. I'm in the process of working w/ a psychiatrist on medication to help me out...I've known since my teens that I've had this issue my whole life, I am very happy (and a little regretful) to be doing something about it now in my 30's.

You know, you can always take a semester off, depending on your university's policies and financial aid situation. Back when I was doing some college-level teaching I had two students do just that to deal with major life issues (like the death of a parent in one case, a cancer diagnosis in another), and they came back the following semester and picked up where they left off. Well to be clear I met them as they were making up for that missed semester via summer class. There were no grade consequences since the "incompletes" were just replaced by the classes they re-took.

aeraen Apprentice

Your schooling is important, Silvane, as is your health. You're really in between a rock and a hard place.

Do you go "home" to your parents in the summer? You might want to consider going off the gluten until your finals are over. Then, if it doesn't cause too much distress, tank up for a few weeks at home before being tested. Remember, though, that even with all that you could still get a false negative.

However, there is still plenty that you can eat in the mean time, but it all depends on your taste. Thinking of things that can be made in a dorm room microwave: Bean dip and corn chips are popular choices at our house. Tacos or tosadas w/ corn tortillas are also big hits here. Read the lables on the corn chips or tortillas. Some contain hidden glutens. The fewer ingredients, the better. I believe Fritos (plain) and Tostitos brands are safe. If your college town has an Asian food mart, rice noodles (and, often, rice crackers) are great options. Apple slices dipped in peanut butter. Blue Diamond almond-based crackers w/ peanut butter, tuna salad, chicken salad or egg salad. Salad, just a regular old salad, is a good lunch. Add a boiled egg, some sliced, poached chicken and sliced ham and you have a great chef's salad. I make tomato soup w/ an 8 oz can of tomato sauce, some onion powder, a tiny dash of sugar, salt and milk.

Original Pebbles cereal is gluten-free, as is (I believe) the chocolate version. But read the boxes, as some are not listed as such. Rice and Corn chex are also gluten free.


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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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