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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

5 Year Old Daughter And Mom With Major Withdrawals After 1 Week Gluten Free
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Hi! New here.

My daughter has Autism and decided to put her on a gluten free diet to see if there would be any improvements in behaviour/language etc. Both her and I went Gluten free and had major withdrawals. Both had insomnia after 3 days- sleeping only 1-2 hours a night, both our tummy's went down 3 sizes, I had so much gas the best way to describe it is that I felt like I was deflating like a ballon, my daughter went ballsitic hitting kids in her Kindergarten classroom. In one week I lost 7 lbs. Of course all of this freaked me out a bit and realized that there may be an underlying medical issue. I put my daughter back on a low dose of gluten. Her blood test for celiac came back positive and we are being referred to a GI doc.

My issue is a little more complicated. I tried to eat gluten again when I realized that I may need testing for celiac. Unfortunately, I ended up in urgent care, sick! sick! lots of Diarrhea, nausea, splitting headache, cramps, bloating, etc. The docs all think it is a stomach flu but I was luckily referred to a GI doc, my appt is in 2 weeks. I am staying gluten and dairy free as that is the only way that keeps me from having diarrhea and nausea. I had my gallbladder removed 2 years ago, I've had psorasis and ecezema for 20 years, recently had one infection after another both bronchitis and asthma (first time with asthma).

What type of testing should I be asking the GI doctor? I'm too afraid of getting sick (more days off work) to get back on gluten? For my daughter what are my options in terms of testing beyond the blood test? And any suggestions for easing withdrawal symptoms for my daughter once she goes totally gluten free again?

Thanks for the help and this forum!

Edited by tarahumara
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Hi! New here.

My daughter has Autism and decided to put her on a gluten free diet to see if there would be any improvements in behaviour/language etc. Both her and I went Gluten free and had major withdrawals. Both had insomnia after 3 days- sleeping only 1-2 hours a night, both our tummy's went down 3 sizes, I had so much gas the best way to describe it is that I felt like I was deflating like a ballon, my daughter went ballsitic hitting kids in her Kindergarten classroom. In one week I lost 7 lbs. Of course all of this freaked me out a bit and realized that there may be an underlying medical issue. I put my daughter back on a low dose of gluten. Her blood test for celiac came back positive and we are being referred to a GI doc.

My issue is a little more complicated. I tried to eat gluten again when I realized that I may need testing for celiac. Unfortunately, I ended up in urgent care, sick! sick! lots of Diarrhea, nausea, splitting headache, cramps, bloating, etc. The docs all think it is a stomach flu but I was luckily referred to a GI doc, my appt is in 2 weeks. I am staying gluten and dairy free as that is the only way that keeps me from having diarrhea and nausea. I had my gallbladder removed 2 years ago, I've had psorasis and ecezema for 20 years, recently had one infection after another both bronchitis and asthma (first time with asthma).

What type of testing should I be asking the GI doctor? I'm too afraid of getting sick (more days off work) to get back on gluten? For my daughter what are my options in terms of testing beyond the blood test? And any suggestions for easing withdrawal symptoms for my daughter once she goes totally gluten free again?

Thanks for the help and this forum!

what further testing do you need? you will have been too long gluten free for any of the usual testing. The kidlet, perhaps an endo. She probably needs a weaning process, to get of the gluten.
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Sorry you two are so unwell. :( I too went through a withdrawl; it's not fun.

At your appointment, you will have been gluten-free for a good 3 weeks and that could mess up your blood tests and cause false negatives. The usual tests are:

ttg IgA and ttg IgG

EMA IgA

DGP IgA and DGP IgG

total serum IgA

For all of the blood tests, you need to be consuming gluten. Some celiacs' autoantibody levels will fall to normal within that time, others take months and months. To have an accurate test, it is often advised you consume gluten (2 bread slices a day) for about 6 weeks. If you are able, eat gluten for the next two weeks until your testing.

Since your daughter has tested positive for celiac, the only testing left is the endoscopic biopsy... if you choose to go that route. Not all doctors demand this test for a diagnosis now a days so it is possible that it won't come up. If she does have a biopsy, make sure about 8 samples are taken in case the damage was patchy; with more samples taken, you are more likely to catch some damage.

I think you might have to ease your daughter of the gluten (after your appointment) but that could alos draw out the misery. Withdrawl takes a couple of weeks to go through so if she goes cold turkey, you might want to do it over spring break. If you cut it out slowly, you could probably do it in under two months. If she has a tough time with that, I would switch to cold turkey. Good luck.

Probiotics can help. start taking them now. Glutamine helps with healing in the gut. Anti-inflammatories like nettle can help too. Many find a whole foods diet is soothing in the first few months too.

Once you've mastered gluten-free you might want to consider cutting out casein. My son has aspergers and we switched him to gluten-free even though his blood work was negative. He showed quite a few improvements on the gluten-free diet but he improved even more on the cf diet. His aspergers symptoms are greatly reduced and he is much happier, calmer, and more focused. Really, the only time his Aspergers is noticeable now is in a high stress situation, and then he handles the stress better than he used to. You might want to consider it.

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Thanks for your reply.

I am trying to read up on this as much as possible but it feels like it is a moving freight train. We got a call from her school today that she is crying uncontrollably. She is on a low gluten diet but I realize that it may be too much. Basically, I have her eating gluten once a day(pizza, pasta). Is there any suggestions on weaning her off of gluten. Should I consider more of a 50/50 approach when it comes to gluten.

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How about you try the "weaning" process during a break from school, like a 3 day weekend, is there some sort of holiday period coming up that you could use to your advantage, start her on a Friday as that would give you four days ?

There is a lot of controversy with adults and addictive substances as to how to best go about gradual vs. cold turkey and get it over with withdrawals, I am not sure of what to say for a kid who won't be able to think "okay, this really sucks that I feel bad now, but in a week it will be worth it." The problem with schools is that they are also full of other kids eating junk food, and sugary gluten crumbs, and milk products, and full of cross contamination from things like play- doughs and snack times. Also, she may have issues with other foods or food colorings or additives, that are not going to be obvious until you get to being gluten free.

I am trying to guess that she is getting cravings and it is no fun at all. Cravings are caused sometimes by malnutrition. You have to be really careful substituting the gluten free items at first for the regular ones, because the sensitive tummy is going to be reacting to these new ingredients. Soy flour and milk casein (the protein) can be a big problem. Say somebody switches out regular cereal for gluten free cereal with one iffy ingredient you don't know about yet, and then uses Rice Dream on it which is contaminated with barley during processing, even tho this company DOES NOT admit this on the label, or they use Soy Dream on it, instead of a nut milk or coconut milk that doesn't have it. Then you make this problem you didn't realize you had, worse for awhile.

Can you get some green vegetables into her somehow, even if you have to make it by putting spinach or parsley into a fruit smoothie with berries and bananas ? There is nothing that fruit and vegetables will not make better. The other thing that is important is can you possibly get some good fats into her in the form of coconut milk, nuts, eggs, avocados, olive oil ? Both of these things are good for hunger pangs. For meals, other than gluten, I'd let her have anything she wanted, as long as it was gluten free during the shakedown phase, as long as the meal had a serving of fruit and/or vegetable, and some form of fat. For example, rice pudding for breakfast, made with leftover cooked brown rice, coconut milk, choice of sweetener, and some fruit. Don't try to do this low fat, it doesn't work, especially for kids who need some dietary fat for brain development. You can do the same with mashed cook sweet potato, or canned pumpkin. If you think the kid just can't do broccoli, try putting some cinnamon on it. You can also do a "teriyaki" sauce with coconut aminos for the soy sauce, pure gluten free vinegar, and orange juice, and bake some chicken wings in it. Then serve it with rice and some pineapple for a "Hawaiian breakfast." You can "bread" chicken strips in almost anything gluten free, such as flours or nut or seed meals, after dipping it in water, egg, or chia seed gel, (chia soaked in cool water sets up) and bake them in a pan with olive oil, and serve them with home fries (regular or sweet potato) for breakfast. You can also do a dairy free buckwheat pancake. Three tablespoons of buckwheat cereal ground up in a coffee grinder, add water to make a thick pancake consistency, along with a spoon of oil, a pinch of salt, and a generous pinch of baking soda and small one of cream of tartar, salt, and optional spice and sweetener. Does not need egg to set up. Fry in olive oil, (might make 2 smaller pancakes) sprinkle with cinnamon and you have something that is very fast to make and even tastes good. You can add a fruit to it like blueberries sprinkled on top, or bananas, and have an egg or bacon or some chicken on the side. It is also good with peanut butter or chocolate chips (Enjoy Life is allergen free chocolate). Leave out the sweetener and it's a flatbread. You can also make excellent brownies out of canned, well drained, and rinsed and mashed black beans (google the recipe "Black Bean Brownies" on the internet, it is a cross over from the regular cooking world). "Cookies" can be made from peanut butter (flourless) and you can add coconut flakes to them.

Any of these ideas will also, of course, work for dinner. I am trying to think of sweeter stuff, but higher fat and protein, because the kid will be wanting sugar.

If you are giving her the big dose of gluten in the evening, then by the next day she's going to be in full reaction to it, and the teachers get to deal with the consequences. :ph34r: While you just about have proved, along with the positive celiac blood test, that This Is The Problem, it might be better to time it so it happens at a different time, like she eats it at school lunch, (and I will bet she is getting some now at school, anyway, via cross contamination) so at least she is at home and you get to see what happens when it hits.

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    • Just thought of something else.  Have you tried cream of rice cereal?   When I was at my worst, I'd have this a few times a day to settle my stomach. 
    • The full celiac panel includes: TTG IGA TTG IGG DGP IGA DGP IGG EMA IGA   You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works. Good luck in your search.
    • You could certainly try.  Just remember that, if the mix doesn't have xanthum gum, you may need a little.  
    • Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works. I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.    I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress.  Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal.  I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean! Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds.   
    • I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
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