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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Skullgrl, thanks for the info. I am in the middle of reading the article. I love personal stories as it helps me visualize symptoms. A list of symptoms can really bring out the hypochondriac in me. Food bothers me neurologically as well - diagnosed celiac and dairy/egg/soy issues - so I shouldn't be too surprised if my son is too much like me. Who knows. He may have experienced stuff and I never knew since he was diagnosed so young and is only now just starting to verbalize. Even now it's not much.
"My head hurts."
"I need to lie down."
"I feel weird."
"I feel off."
That's about it. His GI doc mentioned calcium deposits and seizure activity. I suppose calcium deposits are a possibility as well (due to celiac and malabsorption). When he was 6 he had a bone scan done and was found to have low calcium. He's so tall though that he really surprised his doctor. He still is tall and is over 95% on the growth chart.
No one has mentioned gluten ataxia to me. I found that on my own and so did my sister-in-law nurse. I just wonder if lab tests can be normal but still have reaction at lower levels? Is that even possible? Does that make sense? Aside from the first 6 months when he was accidentally consuming gluten (thanks to rice milk) all his celiac related labs come back fine.
So, so frustrating, but hopefully we'll get to the bottom of this sooner rather than later. I do have a feeling we're going to have to make our diet stricter for a bit to see if it helps.
Yes, Colleen! I am so glad you mentioned this. I should have but wasn't thinking. My son is 9. It's very normal to have spots as you age. Heck, you can have a ton of neuro symptoms and have a normal looking brain. (I did when I had an MRI when I started experiencing hemiplegic migraines for the first time last year!)
Nicole, thank you. I will not be surprised either. It's just so darn frustrating, especially when it's your kid. His GI doc talked about calcium deposits and looking at seizure activity because of it. Apparently you can have seizure activity and not know it. Hopefully this neuro doc is OK and not a waste of time.
This question is about my son but I thought perhaps I would get more response in the general celiac community vs the parenting forum as this deals with the brain, abnormal MRI possibly due to celiac (his GI doc thinking out loud to me).
I was an active member of this forum during my sons' first years after diagnosis but dropped off for a bit as life got busy and both my children seemed to deal well post-diagnosis.
Fast forward 4.5 years... My oldest son, now 9, continually has excellent lab work and shows no GI signs of ingesting gluten. So it seems all good. A little over a year ago, he started having these weird, short, strong headaches. I get migraines (it's familial) and because they were so random and brief (less than 15 minutes) and I was dealing with a period of bad migraines, I let it go.
Well, they got worse in August/September. Eventually I got him into the doctor (pediatrician) who continues to monitor him. Late fall he was anemic which he is back to normal now after supplementation. No scans done. Headaches stayed steady at 1-2x/week. They really seem like they're turning into migraines to me. When I brought up the headaches to his GI doctor, she was worried and suggested an MRI and EEG. No EEG done but we did do the MRI through the pediatrician's orders. It came back abnormal (unspecified white spots in the cerebellum possibly due to migraine). We've been waiting for the neurologist consult and so I'm researching. Oh, his last labs did show a vitamin d deficiency so he's on a mega-supplement (50K IU/week). He's had huge growth over the past year (8 inches! and like 2 pounds)
1. I've seen much related to gluten ataxia but it seems like it is an issue pre-diagnosis or ill-management of the gluten-free diet. Could he be super sensitive to gluten neurologically but seem ok GI-wise and with labs?
2. Could gluten have caused irreversible brain damage pre-diagnosis and it's just now causing more problems? He was very obviously celiac once tested. He had very little physical signs but was tested on a fluke - or so I thought - and his labs were very high and his GI doctor saw obvious villi destruction during his endoscopy without even waiting for the biopsy. He was 4.5 at this time and just thinking about the nutrient deficiencies and issues during those critical growing years pains me. And it's so CRAZY to think how well he actually seemed. Well, except for the weird 8 months of odd things pre-diagnosis, but nothing that would have screamed celiac to me today knowing what celiac disease is.
Obviously, this may have nothing to do with gluten/celiac disease. I am merely looking for information. He is under medical supervision so I'm not looking to self-diagnose but I want to go in with some knowledge and good questions.
Hand sanitizer does nothing for gluten CC. The only way to clean gluten off your hands is to wash with soap and water. That's what I always thought and it was confirmed by my kids' GI doc (my husband and I brought up for debate with him).
In our experience, blood levels can take awhile to get back to normal. Both my children, especially my oldest (4 at the time) had very positive celiac panel results. This was late October blood panel results. By late January (3 months out) the numbers were high but going down. Then another 6 months (now 9 months out) the numbers climbed again because they had been unknowingly consuming trace amounts of gluten from a supposed gluten-free item. Took it out and by the next January (now 15 months out), the numbers were coming down. And finally, this past July (21 months out) we have our first normal ttg levels. So for us, it's taken awhile! By the way, they currently go every 6 months (other than that initial 3 month visit). They can go once a year once their levels have been normal two visits in a row and they have no symptoms in-between times.
Symptoms while healing... For us, we had immediate responses to the diet. Now, the symptoms didn't magically disappear but we could obviously tell that gluten was a problem. Their symptoms continued to improve - it seemed slowest with my youngest who suffered from constipation and pale, sticky stool prior to diagnosis. Then the CC contamination occurred and I could see their symptoms slowly return/worsen. So my oldest seemed to recover quickly but my youngest took time and it wasn't really until over a year or a little more that he consistently had daily, "normal" BMs.
I agree with having a long talk with the doctor. Follow-up tests are important, not just to keep an eye out on the gluten-free diet but from a nutritional standpoint as well. My boys are checked every 6 months: ttg levels, vitamin d, iron among a few other things (depending on the exam and what we go over). The doc did say this last time that once their ttg levels were normal for two visits in a row they could start having annual check-ups instead of bi-annual visits. This last visit finally showed a normal level on my 4 year old (woohoo!) and that was a year and a half post-diagnosis. One, his ttg was up there at diagnosis and two, we had a big CC issue that raised his levels again at 9 mos out.
Also, with frequent check-ups I find that their doc keeps me up-to-date on celiac findings, makes sure nothing else is going on and is very proactive. For instance, he has his patients undergo a bone scan (noninvasive, very simple) to check their bone density around early elementary age to make sure everything looks good and the kids go into puberty with their full potential. My oldest (6 years old) had this done in late spring and was found to be low and so now he sees an endocrinologist to get his bones back to those of a six year old.
As for the shots, honestly, it's a part of life. I had to have shots as a child, weekly ones, and I hated them. But, as a parent, I know that it's such a "little" thing really when you think about other tests that could be done. So if it helps rule something in/out then we just deal with it. I always have some tears but really my kids do well (even my two year old) by me staying calm, matter-of-fact, let them know it'll happen (I have more tears if I keep it hush-hush), and promise a small treat after.
As far as not knowning numbers, couldn't the first set be a baseline to off of? Something to talk with your doc about. Good luck!
I forgot to say that I made sure our cat's food did not have obvious gluten (whether it's CC on the line or not is another story!). We feed him wet and dry food (history of UTI issues so can't do just dry): Purina Fancy Feast Classic flavors (wet) and Purina Fancy Feast Gourmet Cat Food Filet Mignon Flavor with Real Seafood & Shrimp. Sure, it costs a little more but we only have the one cat and it takes him awhile to get through a bag.
Also, no one has brought this up and I'm sure based on your posts that you probably know this, but I wanted to throw it out there just in case. You don't have play-doh in the house, right? Just checking because that gets everywhere and is gluten.
Just supporting you. As someone else said, no symptoms doesn't mean no damage! It's harder to see if you're CC or not (without the bloodwork) but you still need to eat gluten-free.
As for telling family, it takes time and lots of it and sometimes even then they don't get it totally. Because they're not living it. We explained celiac disease and things the kids could not eat to our parents at the beginning. We've since added foods they can eat and now feel confident they can pick the right food. CC in their house is another story however and something we're still working on at almost 2 years out. And still, my MIL brings up a comment that makes me think she doens't totally get this yet (like saying you can outgrow after I've repeatedly said you cannot, that you have to eat gluten-free FOREVER). It's frustrating but you learn to ride it out, keep explaining, and have a hawk's eye while you're there eating. Plus, I think it helps to always share doctor appointment info with them. Like how the kids are growing, what the latest labs are, how they're doing on the diet, etc.
Wow, great responses! My four year old seems to have a hard time occasionally with never eating gluten again (like he can even remember eating it!). I think part of if it is a stage at that age. It's a huge realization to think of forever. You know? My 6 year old was diagnosed at 4 and just really went with the flow and seems to have a grasp on the fact that he can never have it. My 4 year old also really likes me to read the book "Gluten-free with Emily." He loves that her friend's name is Dylan (his name too) and he laughs every time she has to eat fruit, lots of fruit, for dinner one time at his house while everybody else ate spaghetti (laughter is the best medicine, right?). Plus we use the purple elephant line all the time with bloodwork. It produces a few more giggles amongst the tears. Other than that, we keep our attitude straight forward and positive about it. And as someone else said, if you know you'll be out and about, plan so that he can at least eat something similar, or if not, bring along a treat for dessert or something. Find a restaurant close by you can trust (once you figure out what's going on of course) and go there on occasion as a treat out - for him and you.
As for the whole CC thing. Knock on wood, we seem to be doing ok with the pantry items you listed using store brand names: rice (Meijer or Kroger, I don't rinse), popcorn kernels (Kroger), frozen veg (usually Bird's Eye View plain steamers or mixed Kroger veggies), frozen fruit (rarely buy), plain canned beans (Kroger plus I always rinse because of sodium), dried fruit (I check label and if it says made in wheat facility, etc., I don't buy but I haven't had to make a fuss about checking further than that). Nuts are a big made in facility with wheat, nuts, dairy, etc. type of food. The only brand I've found to work around me is Kroger. It is the only one processed in a facility with other nuts only. So I stick to them.
Thanks for the replies! I'm going to try him on the Carlson for Kids. I take a chewable wafer and though it is chalky (like a Tums) I love the flavor. I think he'd be ok with the texture if the flavor is yummy like mine. I completely forgot about Tums having calcium! He can eat dairy but his intake is so irregular(milk daily on cereal but otherwise, sometimes he likes it and sometimes he doesn't) so a supplement is a good idea.
If it's potentially coming from his food (and yes, it's possible), try going as whole food as you possibly can. Stick to potatoes, fruits, vegetables, plain meat, etc. Then you could add in more of the "processed foods."
We've been lucky so far but my boys ttg both went up at 9 months out (July of last year was when they were tested). We ate mostly whole foods, did not eat out, had rehauled the kitchen, etc. so it was very frustrating. Since my boys aren't horribly symptomatic unless they're consuming a bunch of gluten I knew it was something they were eating relatively often. Turned out it was their rice milk (they were off cow's at the time). It was labeled gluten-free but obviously wasn't. They were drinking Trader Joe's rice milk which apparently is Rice Dream repackaged. So just that minute amount on a nearly daily basis caused their ttg to rise significantly. They're obviously off it and now, after an entire year later, we finally have normal ttg levels. And that's why I suggest making food that you know where each item comes from. It is a lot of work but you'll have a baseline then.
My son needs to take a chewable calcium supplement per his endocrinologist (he's six so no pill swallowing yet). He mentioned Carlson's chewable calcium. Yet when I looked at reviews, parents said it was chalky and tough to chew and the kids didn't like them. Anyone have a supplement their kids like? He suggested 250mg x 4/day. Thanks for any help!
It does break your heart, doesn't it? My 6 year old is a gluten-phobe and is obsessed about nothing gluten touching anything of his (not just food stuff). But my 4 year old is starting to ask why he can't have it. Just a short while ago he watched his dad eating something and said, "When I'm a daddy, I can eat gluten too." And when DH said no that he couldn't, he started bawling. But on the positive side, dealing with this will hopefully help them become more responsible and to think of others. That's my hope anyway.
Nope, I was only tested right after my first was diagnosed (negative). But since then my body's really gone out of whack after the pregnancy/birth of my last baby (over 2 years ago). Sometimes I wonder and think about being tested again, especially lately. But I wonder if my changes now are pregnancy-related once again. Good luck! I'm thankful I just need to ask - no fighting here.
Everyone's different. I have a really hard time sensing if my kids are cross-contaminated. Now, they haven't eaten whole wheat pizza so I can't compare with that but on occasion I notice some behavior change or a poop change and wonder, is this from gluten? But that can really drive me crazy so I try not to worry about it much - unless the symptoms were to continue. The only time I've noticed a problem was after continued, daily exposure of small amounts of gluten in something that was supposed to be gluten-free (Trader Joe's rice milk). Even then, the boys went months drinking that before they started acting like they did prior to diagnosis and by then their ttg levels were way up again. So if they're not reacting, don't sweat it. It was a mistake and it happens. Just get back on track. Be thankful they didn't get too sick!