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
Why don't you call your doctor's office and say you won't be able to sleep until you find out what the range is? I don't have any confidence that they would know, since your doctor was so misinformed about celiac, but I bet they'd find out and tell you. In a quick search on this site I found your son's number would be in the low normal of some ranges, and outside in the high side of others. Unfortunately, celiac disease can be really hard to diagnose in little ones, as the test results aren't always accurate.
I know how hard it can be to wait for those specialist appointments, and I just encourage you to keep pushing when you get there until you get answers. I wish someone had encouraged me to do that - we went for regular 6 month appointments for years before my son got a celiac diagnosis. Don't let them just send you away with a prescription or two, like I did. Hope your son feels better soon.
There is definitely a link. I have read that all diabetic children should be tested for celiac, as an alarming percentage of them have it. Autoimmune diseases in general tend to cluster, meaning having one puts you at risk for developing others. My son has vitiligo in addition to celiac. It is just a few white patches on his skin, and he is so pale that they aren't very noticeable, so I have chosen not to treat him. But still, getting that diagnosis was a reminder to me of the unfortunate nature of autoimmune diseases.
I can't tell you how many times my kids have overdone the sweets - like yesterday with Easter baskets, and they never ended up in such bad shape. Definitely don't blame yourself about the cookies - the emergency rooms would have lines out the door all the time if they were the culprit. I am really sorry about your daughter's experience, and do let us know what you find out.
Thank you both for your help. I will add what I learned, too, in case anyone in the future does a search with a similar question. Carnegie Deli was worried about cross contamination in their sliced meats, but recommended the tuna and chicken salads. Dallas BBQ said their roasted chicken is safe, and recommended asking for a baked potato instead of the fries. My daughter also did go to Sambuca, and LOVED their gluten free pasta.
My son did have joint and bone pain, and it took about two years of gluten free living for it to stop. I kept wondering if he could have another autoimmune problem, it was scary. I wonder in his case if it was partially the rapid bone growth that caused the problem. He was a small, slow grower and immediately began to grow faster when he went gluten free. One year after diagnosis he pulverized an arm doing just normal kid running around, and it was because the rapid growth had caused a cyst to develop in his bone. (It was a horrible day before we learned from the specialist that the cyst was benign, but that is another story.) Apparently cyst development in bones, especially during periods of rapid growth, are not at all uncommon, but you normally do not find out about them unless an accident causes the bone to break.
My son is just now up to a normal stamina, two and a half years in. My husband and I look at each other and smile all the time when he talks about wanting to be an incredible athlete, because those were not dreams he could have dreamed before. He is not the most talented athlete on his team, but years of pent up desire bursts out of him everytime he plays, and it is wonderful to see. I know lots of kids bounce back much more quickly, but for parents who think it isn't happening quickly enough, I encourage you not to give up hope. It can definitely still happen.
My son's tummy bugs were worse before his celiac diagnosis, and have gradually disappeared (knock on wood). He still is susceptible to stomach pain unrelated to viruses. For him, it has been constipation - not that we were aware of, since he was still "going", but which was found by xray, and difficulties with other foods. The constipation is unlikely for Jude after his diarrhea, but it is possible that in his weakened state he is having a hard time digesting certain foods that he normally doesn't have a problem with. Corn, soy and milk all gave my son pain early on, but we don't have to limit them anymore. I know your son just started the prevacid, but long term use of prevacid was also one of my son's culprits, so if your son takes any other medications, I'd think about that, too. There are unfortunately many reasons for tummy pain, and I know it is just so frustrating when your child hurts and you can't fix it immediately. I hope Jude feels better soon.
I'm sorry your little guy is having such a hard time. Have you seen an allergist? I would look for a pediatric allergist who specializes in food allergies, if you haven't already seen one. With the constant congestion, even if it is celiac disease, there is probably an allergic component going on. Many times celiac and allergies do go hand in hand, and a pediatric allergist could also do some celiac bloodwork. If you are seeing a doctor even about serious eczema that denies the possibility of a dietary component, I think you are seeing the wrong doctor. Once I read that 20% of all eczema is related to a dairy allergy. Have you tried eliminating dairy?
Many of us feel "over our heads" with this stuff - there is just so much to learn. If you start modifying your child's diet before seeing a doctor, I would get a notebook and write down everything he eats and any symptoms each day. Good luck!
My daughter is traveling with a school group to New York, and they are scheduled to eat at the Carnegie Deli and Dallas BBQ. Does anyone know of any gluten free options at either of these places? She is a little intimidated about asking for gluten-free foods, and I am trying to make it as easy as possible for her.
Also, if anyone happens to know of any breakfast spots that would be good within walking distance of Sheraton Manhattan at Times Square (W. 73nd St., Central Park West and Columbus) please let me know. She has plenty of breakfast bars packed, but if there is anything gluten-free around it would be great to know.
This is one of those many days when I wish I had a medical degree. Many of the symtpoms you describe could definitely be due to celiac disease, others, I'm not sure about, but that is just my ignorance. Nothing is harder than waiting for those specialist appointments, is it? At least you are armed and ready with all your facts and observations. Definitely take your list along, in case your little guy distracts you or the doctor doesn't seem to be a great listener. Hope it goes well - and I'd love to hear what the doctor says.
Jennifer, I am so sorry that your children have had such a tough time. I remember those days before my son was diagnosed with celiac disease when he constantly had "tummy bugs". It was only when a nurse I was talking to over the phone said, "It doesn't sound much like a virus to me" that my light bulb went on. I thought, she's right, it must be something else, and after that I was a lot more pushy with our GI doctor about figuring out the problem. I would definitely test your children for celiac. If it isn't celiac, ask your doctor(s) to keep testing until you do get a diagnosis. It is so awful to see your children sick, and when it keeps going on and on, it is truly maddening. I hope you get answers soon.
Your daughter sounds like my daughter used to be, and I felt really sad for her as I read your post. We pulled out the stops to deal with my daughter's organization issues in middle school. I found a young counselor who had ADHD herself and she helped my daughter a lot. We also had meetings with all her teachers together, and they were very helpful. My daughter always tried really hard, and was constantly asking for a new binder or something that she was sure would help her get organized. But even with all her efforts, she was constantly missing out on things, like field trips because she forgot to bring home the permission slip.
Now in high school, you would never know that my daughter had any organizational difficulties. (Well, o.k., unless you open her closet.) She is a much happier person, understandably so, since now things aren't constantly going wrong for her. She is on medication, which I think was one factor in her improvement, but she is doing so well that the doctor thinks we can try going off of it this summer.
My suggestion to you is to keep trying things until your daughter is able to run her own show well. I have seen too many of our friends' extremely smart kids with organizational issues in middle school crash and burn in high school. Sometimes it is because they are self medicating and sometimes they are just sick of it all. Just because they can ace every test and keep up the grades while forgetting their homework regularly doesn't mean that it won't catch up to them. Some kids make it through high school only to fall apart in college. So it is good you are looking for answers now. I think it is easy for parents of really smart kids to ignore the problems, which you obviously aren't doing.
And about the celiac connection - I wonder if long term consumption of gluten in an individual having an autoimmune response to it causes some permanent brain changes. I also wonder if neural pathways that weren't developed at just the right stage can rebuild themselves over time, with help. It seems possible to me . . .
Did you make a formal request in writing for a 504 plan, and was a meeting held that determined your child is ineligible? According to federal law, an eligibility meeting must be held, and you must be notified when it is held, in response to any request for a 504 plan. Since celiac disease is not specifically listed under section 504, you may have to make your own case, but I think it would be very hard for any group of educators to deny that celiac disease has an impact on learning. All school systems interpret things differently, but they aren't allowed by law to say "we won't do a 504" without following the process.
That being said, it is my understanding that the plan will impact the individual student's learning environment, and not that of the whole class. So I do not think you will be able to develop a plan which says that none of the children can use food for learning activities. You can have precautions and alternatives in your child's plan, however. (But I am with you - teaching with food is bad on so many levels - my son's class only stopped when they got mice in the room.)
Here is a link I found helpful: http://americanceliac.org/for-families/at-school/, and for more general info: http://www.greatschools.org/LD/school-learning/section-504.gs?content=868.
Two inches growth in three months is awesome! I don't know whether thyroid treatments can result in this kind of growth, but celiac children who are treated can definitely have growth spurts. My son went from 25% in height to 50% within 6 months of diagnosis. His constipation did not go away right away, either, and he is still on miralax. He also has had to take several doses of miralax (by doctor recommendation) over a couple of long and miserable weekends to do a cleanout. It wasn't much fun, but he felt lots better afterwards.
The complexity of your situation makes things more difficult, for sure. Even without multiple autoimmune diseases, it can take a good while to figure everything out. Best of luck with everything.
I can certainly understand your concern, if you have been gluten free for 6 months and still have such a high number. My son started in the 200s, and after a year he was down to 60 - still not in the good range. It took another year to make it down into the safe single digits. Our GI doctor said that the higher the number is, the longer it can take to bring it down. This didn't make a lot of sense to me, I admit . . . From other posts here I have learned that sometimes it just can take a while to figure everything out - there can be so many sources of hidden gluten. There are also rare celiac individuals who do not improve on a gluten free diet. Has your daughter's constipation improved while on a gluten-free diet? Did she by any chance have a gowth spurt during that time, which would be a really good sign?
While we are on the subject, celiac disease also can cause delays in tooth development. The dentist said my 10 year old is about 2 years behind. I'm just happy that he is expected to catch up.
I know this doesn't answer your original question, LJ Mom. I agree with whoever said the doctor is probably confused. Maybe he was confusing gluten with milk products? A lack of calcium can certainly affect bones and teeth.