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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Misdiagnosed celiac disease Complications
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Many long-time posters on board know who I am. I don't come around as often as I used to. The last 4 years have been pretty bad for me and my husband (health wise).

Anyway, he is now still very, very thin and needs a 3rd hernia surgery. Surgeon won't do it unless he gains 10+ lbs. It's very difficult for him to gain weight. So we are stuck, not going forward and refusing to go backward. Even I am depressed now; refusing the things I used to love to do; constantly worrying about my husband and what wll end up happening.

So I haven't had much to say, maybe I'd share on board here and there - I guess for a while there I was a regular. So I'll just share this news, maybe ask for some suggestions to gain weight (foods that don't include soy, eggs, frying, spices, fruits/vegetables, and of course gluten, no tomato sauce - this should be a challenge as he really needs to gain and surgeon turned him down because he's too frail. He started with the Ensure, but it's not enough calories.

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Looks like he can do cheese and meat. Those could fatten me up. Poor guy can't eat much, can he? Potatoes and rice. Ice cream? Beans? When my cousin grew 10 inches in 4 months & gained no weight, his doc put him on ice cream and a beer right before bed. ( Lucky 14 year old). What about seeds? Pumpkin, sunflower, sesame? Hang in there!

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Hi Deb,

Sorry to hear the hubby is having issues. I'd leave out the dairy myself, jus because so many of us have problems with it.

Avocadoes are a good source of protein and healthy fat, so maybe homemade guacamole would help. Hellman's makes one kind of soy free mayo, called canola oil cholesterol free mayo. A couple avocadoes, some lemon juice and mayo, maybe a can of salmon or mackeral stirred in and you have a nice nutritious spread.

You don't have to eat guacamole on a sandwich either. It adds a lot of flavor to rice dishes. Just nuke a bowl of rice and stir in a couple tablespoons of guacamole after it's out of the microwave.

Peanut butter if he can eat it would be good for calories also.

Steak, hamburger, and chicken are good also.

I made a mean soup a while back by doing a pot roast in a pressure cooker with a couple sweet potatoes. Once the sweet potatoes are well cooked they can be smashed into a thick puree for a nice thick soup. They taste pretty good that way too.

I tend to not put much of any spices in dishes beyond salt and pepper when I cook them. I figure it's safer to add spices when I eat the food, that way if something doesn't agree with me I haven't wasted a whole pot of food.

I have read that Spam is gluten free. Fried Spam for breakfast might add some calories.

Maybe some coconut oil for cooking would help. It is supposed to be easily absorbed and utilized.

Ok, just some ideas.

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I am so sorry you are having to go through so much. One thing that worked for me to gain weight was Wylde pretzels, they are gluten and soy free. One bag has about 1000 calories. I almost never am hungry and have a hard time keeping weight on but when I needed to gain 10 lbs I would open a bag in the morning and just keep munching them all day with the goal of finishing the whole bag. If he can tolerate them perhaps adding those might help. You have gotten some other great ideas. I hope they are helpful. I'll be keeping you two in my thoughts and prayers. Let us know how your doing when you can and make sure to take care of yourself also.

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Hi Deb,

After thinking about this more, it seems to me maybe he should be seeing a specialist in celiac disease. There are people like Dr. Fassano around who might be able to help. Sometimes they put people with Crohn's on immune system suppressants to give them time to recover a little. There is also enteral food that people can get that is supposed to be hypo-allergenic and easily absorbed. It might be time to look at some other options besides the usual gluten free diet. Another doctor I saw at a recent celiac meeting in VA. is Dr. Gary Kaplan (Center for integrative medicine). He sounded like a good doc but I have not seen him personally.

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Many long-time posters on board know who I am. I don't come around as often as I used to. The last 4 years have been pretty bad for me and my husband (health wise).

Anyway, he is now still very, very thin and needs a 3rd hernia surgery. Surgeon won't do it unless he gains 10+ lbs. It's very difficult for him to gain weight. So we are stuck, not going forward and refusing to go backward. Even I am depressed now; refusing the things I used to love to do; constantly worrying about my husband and what wll end up happening.

So I haven't had much to say, maybe I'd share on board here and there - I guess for a while there I was a regular. So I'll just share this news, maybe ask for some suggestions to gain weight (foods that don't include soy, eggs, frying, spices, fruits/vegetables, and of course gluten, no tomato sauce - this should be a challenge as he really needs to gain and surgeon turned him down because he's too frail. He started with the Ensure, but it's not enough calories.

So sorry to hear of your troubles, debmidge. I know how hard it can be to maintain weight (I am one of the truly malnourished Celiacs) so maybe I can share some idea's with you.

One of the best ways to pack on weight that I have learned from going to weight training classes

is to eat protein but that is not always an easy task. It will give you muscle mass and not fat mass...which is what you really want. I am having trouble getting all the protein down that they want me to eat but I think I may have a slight pancreatic insufficiency going on. If your hubby can tolerate meat and turkey, those are calorie dense, muscle building food choices. Add a baked potato to that, with butter if that's possible, and that will help him gain.

What about calorie dense protein shakes? They can be taylor made but the one I bought is gluten free and I can mix it up with whatever liquid I choose....milk (soy or cow), water or whatever agrees with me. You can even add ice cream, if tolerated, and that makes for a fattening, protein rich drink.

I was going to add that dried fruits have a lot of calories in them but I see he cannot have fruits or veggies. That has got to be tough!

Can he eat gluten-free pasta? I realize he cannot tolerate tomato sauce but there are other options for toppings. A steak and pasta dinner sounds calorie packed.

There are also the gluten-free goodies but I hate to say eat a lot of them because they are so bad for you and you don't want him to add fat, even though it is extra weight. That could cause other problems.

I would think that his doctor might even consider TPN, which is the nutrients through an IV that they have. It can be calorie dense and used to gain weight for people who have trouble with that to the point of being dangerous. I can attest to the fact that sometimes, it is downright hard to eat enough to gain a lot of weight if you are a Celiac.

Most people just don't understand that! :blink:

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I agree with the protein shakes. I use Jay Robb shakes. They are whey protein and gluten free, msg free. These can be mixed with cream or ice cream to increase the calories. I personally like to mix them with cream. I would use these between meals to increase calories and protein.

I am so sorry you are having these problems.

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Can he do cornmeal? There's a dish called polenta that italians make. Just take 1 part plain dried coarsely milled cornmeal, and add to 3 parts boiling water, plus 2 tablespoons olive oil. Stir on medium/low heat until smooth and cooked (about 20 minutes). Then, if he can eat theses things, add a ton of butter to the polenta, or lots of olive oil and some salt. Eat it plain like this. Or let it cool, cut into squares and eat as finger food.

Also, make some of that thick risotto-type rice (arborio or carnaroli rice) (takes about 20 minutes). When done, add olive oil and salt. If he can do butter or lard or bacon or cheese, then add to the rice and stir up.

Can he eat chickpeas? If so, then hummus with added olive oil is quite calorie-dense too.

If he can do dairy: ice cream, heavy whipped cream, clotted cream, rice pudding (without the egg), tapioca pudding (without the egg), full fat cheeses like camembert,

Hope this helps..

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I sent you an email Deb.

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    • Thank you all for your great suggestions! Will take all of it on board
    • Dairy is a major issue with celiac, due to the enzymes to break it down being produced by the villi tips being mostly destroyed or damaged first. Eliminating for a few months may be critical. I might suggest digestive enzymes, I am taking Jarrow Enzymes at 2x the dose, Jarrow Bromelain, and sometimes some extra papaya enzymes. I have issues breaking down the large amounts of foods I consume otherwise (I am trying to body build bulk). I also would look at some protein powders if I was you. Vegan protein powders are easy to digest most times an can be great. Pumpkin Seed protein is the easiest on the stomach, being a balanced PH, high in zinc, iron, magnesium, it is very good for recovery and putting on weight in addition to others. Might also consider blends, try not to get anything with too much gums in it. I like NutraKey V-Pro and MRM Veggie Elite. I also buy a whole list of others. On her food, veggies, and meats should be cooked to almost mush, try using a crockpot and stewing them. This will make them easier to digest and break down.
      Is she having any other issues? Like Bowl issues? I find I can loose hunger if I back up, and I have to take magnesium like crazy and eat a whole lot of fiber to keep it moving. Take it you already read the newbie 101 section about getting all new cookware, and deconing the house? Bit of a extra tip I swear by to everyone, Freezer Paper/Butcher Paper. Makes a nice clean prep surface and easy clean up.
    • Hi Kirsty, Gluten messes me up in a lot of different ways, some of which I recognise in your first list. You can find a massive list of symptoms associated with celiac here: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ and it may be that some of your other symptoms can be found there. It's also worth searching this forum as it's been going for a long time, in internet years at least.  It certainly messed with my blood sugar and like you I'd take tests which didn't reach the extreme values, but that didn't stop the symptoms. The only way I realised this was when I removed it from my diet, for other reasons and found that a load of different other symptoms also resolved.  After this happened I then went back on to gluten for a test, a gluten challenge. My symptoms came back, but my blood test and endoscopy were negative for celiac. My consultant told me to avoid gluten for life.  In your case you need to decide whether to push for more celiac testing or not. If not, please consider fully excluding gluten. My own experience is that it's not something that you can have a little of and get a health benefit, you are still engaging your auto immune system. Obviously if you're experiencing extreme symptoms when you remove it you should do it in consultation with your doctor, but maybe if you could just get through those difficult first few days you may experience relief from some of your symptoms? Best of luck matt    
    • So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway? Why is this disease so confusing for the medical world?  Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi.  It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it.  Makes me so infuriated I just laugh about how I already seem to know more. 
    • Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.   
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