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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Know I'm Doing The Right Thing...but So Frustrated.
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13 posts in this topic

I think this is more a newbie vent than anything...but reading here today has been so validating for me.

My son is 7 years old. Starting at age 3 we have battled a whole slew of things with no difinitive answers. He has long had horrible mood swings coupled with tantrums, kicking, yelling, etc. Even that description does not give the severeness of it justice. When not in the middle of one, he is one of the sweetest and loveable kids. Dr. Jekyl and Mr. Hyde. He

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Hi and welcome. It sounds like you've made great progress so far. Keep right on trusting your mom instincts. It sounds like you have good ones!

A lot of Dr. Jekyl and Mr. Hyde kids have food chemical intolerances as well as reacting to gluten and casein. Preservatives, food colors, salicylates, or natural amines that mimic neurotransmitters can all be issues for different people. Mom and I could always tell when my brother got into a bunch of food colors or artificial flavors because he'd go Mr. Hyde! Allergic reactions can be within a couple hours, but salicylate reactions tend to build up over days or weeks of exposure and amine reactions can be delayed as far as two days.

You might find these websites helpful. They have information on food intolerances and describe an elimination diet that is low in additives, amines, and salicylates called Failsafe. You can use to see if food chemicals are an issue. The work is out of the Royal Prince Alfred Hospital Allergy Unit in Australia, where they are much more aware of food chemical intolerance and allergies than in the US.

http://fedup.com.au/

http://failsafediet.wordpress.com/

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Keep a very detailed food journal. I say journal, because you should also be writing down amounts and long term reactions. Bm s and behavior symptoms checks too.

Some food reactions last up to 12 days (eosinphils) after the food "trigger". :blink: That's why a long term written history is critical to getting the full picture.

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Yes, it could be a smore! And, yes, I have a crazy mood-swing celiac kiddo. She too is the most loving little girl...until...gluten. She gets super physical and has very little impulse control when she has gluten.

Hang in there. Glutenologist and others are more experienced than I, so definitely follow their leads!

And, there are good graham crackers at whole foods! We camp a lot, so gluten-free smores are part of our lives!

Thinking of you!

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Keep a very detailed food journal. I say journal, because you should also be writing down amounts and long term reactions. Bm s and behavior symptoms checks too.

Some food reactions last up to 12 days (eosinphils) after the food "trigger". :blink: That's why a long term written history is critical to getting the full picture.

That's great advice. Also, remember that cc adds up when you eat more of something.

It is very hard when it's your child.

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That's great advice. Also, remember that cc adds up when you eat more of something.

It is very hard when it's your child.

Thank you all so much for taking the time to respond. It means so much to me. Sometimes I feel so lost. His attitidue is a little better today...still stuffed up. He doesn't react very well to typical cold/allergy meds so bought some all-nutaral stuff (Sinupret) yesterday in hopes it will help him.

Thank you for suggesting the journal. This is something I've been doing. I have to remind myself to be as detailed as possible, though.

I was so excited last night to tell my husband about reading the posts from others on here that have a child that show reactions through behavior. It was such a 'weight lifted off of our shoulders' to know we aren't alone and that we aren't insane!!! :)

I do have a question - what does "cc" mean? Sorry if it's obvious...

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Cc means "cross contamination". Oats are a good example. Regular oats, due to standard harvesting practices, have wheat in them. This is cc. Sharing a pb jar with a wheat eater will cc the pb from the bread crumbs on the double dipped knife.

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cross-contamination :)

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Thank you. That makes sense. :) I have to be honest that I haven't given that as much attention is I should. And I'm honestly not sure how much CC goes on in our home. But it's definitely something I will be paying more attention to.

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Hi Lindsay,

If you do a search on gluten and ataxia or gluten and opiates you will find there is a definite connection to affects on the brain. There is no doubt that gluten can negatively affect the brain. Some people think casein can have bad affects on the brain also. Casein is the protein in cow milk. I know I once ate some cheese and couldn't sleep for 3 days straight. It doesn't affect me like that anymore but I have healed a lot since then. So, IMHO a mood change is not a surprising thing from gluten.

There is some possibility gluten and casein can negatively affect children with Asperger's syndrome, but that is controversial at the moment.

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Thank you. That makes sense. :) I have to be honest that I haven't given that as much attention is I should. And I'm honestly not sure how much CC goes on in our home. But it's definitely something I will be paying more attention to.

A person who is gluten-free needs separate condiments, a separate cutting board (gluten gets in the scratches and is hard to clean out), and a separate toaster or toaster bags at a bare minimum. You also can't stir a normal pot of spaghetti and then forgetfully stir the gluten-free pot with the same spoon, or cut regular bread with a knife and then use on the gluten-free loaf without washing it.

Baking with wheat flour is something else to consider because gets in the air so easily. Play-doh is another gotcha as it contains gluten. We've even had some highly-sensitive members that tracked problems to gluten-containing pet food.

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I just want to say you are not alone.

The behavior you describe is my son (also 7) EXACTLY! He is the best kid in the world on good days, but those are overshadowed by the bad. Tantrums over the smallest things, he hates us, wishes he was never born, everybody is mean to him, etc. He has also started throwing things and knocking over things. Consequences do not matter. Rational thinking is gone.

We think we do a pretty good job with the gluten-free diet (I have celiac too) so we just don't know what else to do. It is exhausting.

We were just at the Celiac clinic today (1 year blood tests) to see if his numbers have gone down. They had not gone down much at his 6 month check-up. I talked with his doctor about other sensitivities (artificial color, preservatives, etc.) she didn't know much, but said it was certainly a possibility. But really, since we have been gluten free, he doesn't eat much processed foods at all - rarely anything with food color. She suggested a more detailed food journal/behavior journal.

She is also going to refer us to the clinic's social worker to help us find a behaviorist who might be able to give us some coping techniques. If we don't get this figured out, we are in trouble. I can't imagine him as a irrational teen-ager rampaging through the house. If I learn anything, I'll share it here.

We are also trying to make sure we can tell when he is just being bad and when he is being "gluten bad" . . . do we punish him for behavior that he simply can't control? My husband's fear is that it is not the gluten at all and that our son is psychopathic - then what do we do?

The weird thing is that he is an ANGEL in school. When I describe his behavior at home, they are shocked and in disbelief. If it is truly out of his control, how is he keeping it together at school?

Hang in there . . .

Cara

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Cara - this sounds very similar to my son! He improved after removing gluten but then he kept having episodes. We removed milk an he got even better. The extreme episodes are farther apart and good dys growing in number. But he stills has those bad says and days of just constant irritability. It could be a cc of gluten or milk,...or something else we haven't identified. I have a lot of the same questions and concerns as you.

Our son did see a behavior therapist when he was 4 or 5 and she didn't see any concerns like ADD, etc. she noted he seemed to have some heightened sensory issues but not horribly so.

I am Watching his sugar pretty closely. We see an alternative med biofeedback specialist for his allergies (it helps...whacky but it does) and she noted his sugar reaction (along with milk and gluten) was really high.

Keep in touch. I will be interested to hear what you are able to uncover.

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    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
    • I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass?  But a nice reminder place, with a dishwasher, should be fine.  If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle.   - ciders on tap might, just a slight chance, have an issue.  Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The  high sugar content of the drink.  I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink?  Not this " redds Apple" pretending to be a cider - it's beer with apple flavor.  Or one of those " gluten removed " beers?  
    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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