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
Read up on the Paleo diet. I lost weight while consuming slightly more calories. Once I eliminated grains and added more fat, that seemed to do the trick. Plus, I found that I felt GREAT. Not starving all the time. I made sure I had protein and fat at every meal (avocado, nuts, olive oil, etc.) and everything improved (medical numbers, skin, hair, energy, mood, etc.)
Since it sounds like testing (for celiac) is complete, you can go ahead and start him on the diet. If the test results come back inconclusive (biopsy can only confirm celiac, not rule it out) you can continue the diet for 3 months to see if it helps. Not sure what his symptoms were, but if you see improvement on the diet, you will have another clue as to what might be causing the problem.
I do think it would be great to have an actual, concrete diagnosis. However, there is a chance you could go through all the pain and suffering and the biopsy could STILL be negative and that will not rule out celiac. It just means the damage was not found, NOT that she doesn't have it. The doctor could miss it, the gluten challenge might not have been long enough, (my doctor said 6 months eating gluten), etc. etc. If she is told she does NOT have celiac (when it kind of looks like she does) then she might feel free to continue to eat gluten - even occasionally - and her health will not improve.
Some doctors won't diagnose without a positive biopsy. Others will take into account family history, symptoms, response to the gluten free diet, etc.
Some schools, colleges, camps, will require an actual diagnosis in order to provide accommodations. Of course, a diagnosis of gluten intolerance would also work in this case.
What blood tests did she have? Maybe she was not given the whole panel (not uncommon) . . . maybe if you revisit that you could get more information.
Anxiety and depression are also symptoms of celiac disease.
From my experience, my youngest son was diagnosed first. Once I learned about celiac disease, I realized I had most of the classic symptoms for about 5 years. I was extremely anxious, but I attributed it to being sick all the time and my doctor not finding anything wrong with me. My blood tests were positive, so I went gluten free with my son. Suddenly felt great. Then doctor wants to do biopsy. Says I hadn't been gluten-free long enough to change outcome so I did. Biopsy was negative. New doctor (at Celiac Clinic) says to go back on gluten for 6 months and do another. I made it about 6 weeks and felt terrible again. Stopped and just went gluten free. I didn't need a positive biopsy to tell me I shouldn't be eating gluten. My doctor diagnosed me with "gluten intolerance" even though I had positive blood tests and a son with celiac. I clearly have celiac, but who cares? Treatment is the same.
Bringing the kids for a visit on spring break in April. Last time we were there, no one was diagnosed. This time 2 of the 4 of us are gluten free. We plan on getting a hotel with a kitchenette so we can cook breakfast and pack a lunch, but we'd like to eat out a couple of times too.
However, the thought of being sick while traveling, or having symptoms on the train ride back horrifies me. My 10 year old is very sensitive so we need places that don't just offer gluten-free options, but really know and understand cross-contamination, etc.
Options for breakfast, lunch, dinner, even a bakery for a treat would be great.
I think what you are doing is great, however, you will not get the full experience because you will have no reaction when the waiter, menu, kitchen staff, manager, etc. is wrong. Our extended family is constantly rolling their eyes when we decline dinner invitations because they just don't get it. If the place has a gluten free menu, why don't we just enjoy it? The consequences of putting our health into someone else's hands - a stranger who may or may not know what they are doing - is just too great. And, too stressful. Sometimes I can't even enjoy my meal because I am so worried about what may happen tomorrow.
We have a limited number of places we trust (CPK is one, but only the location at the Pru, not the one downtown) and sometimes even that can be inconsistent. The fantastic waiter one day may not be there the next time.
If I was just "choosing" to be gluten-free, there would be 100s of options for me. The reality is very different that what it may appear.
Maybe you could get those test strips (never tried them) and test each meal to see how often mistakes really happen.
We have 4 in the family, 2 diagnosed with celiac disease (10 year old and me, the mom). We live in Boston where we seem to have some choices for eating out. However, for the kid, he can go to several places and get a cheeseburger (99, 5 Napkin Burger, etc.) but none of them can cook french fries safely. Who wants a burger with no fries? We LOVE it when there is a carnival or festival in town because the French Fry truck is usually there. They serve ONLY fries, so the oil has not been contaminated.
Which brings me to my biggest frustration. I can cook most things at home. However, I'm not too keen on deep frying. Every now and then we'd love a real, fried donut . . . or crispy fried chicken. I just can't duplicate those kinds of treats in my kitchen.
Ditto with wood-fired pizza crusts. That is what I miss most.
It is not uncommon for people's symptoms to change over time and for them to be more intense after being gluten free. The longer you are gluten free, the more sensitive you become and the more intense your symptoms become. My son had ZERO symptoms (except for a behavior change) when he was diagnosed three years ago. Now he gets stomach pain and vomits right away . . generally feeling unwell for about a week and then joint pain and fatigue for about a month. It's like he has a bad case of the flu and it takes his body weeks to recover.
I used to have all the classic symptoms. Now I get a brief upset stomach followed by weeks of fatigue, insomnia, anxiety, brain fog, and joint pain.
It is weird how your immune system works.
I wouldn't cut anything else out of your diet. I would focus on making sure you were actually 100% gluten free. Take into account cross contamination, things like that.
My son was only positive on some of the blood tests, perfectly normal on the others, so if you were not given the complete panel of tests, it could be missed. Also, some people (esp. kids) never have a positive blood test. It is possible to have negative tests and still have celiac. Another thing to consider is non celiac gluten sensitivity. Same symptoms, just no positive blood tests . . .
A biopsy can also be negative and that doesn't necessarily rule it out. The damage can be missed by the doctor.
After he's had all the tests (have the blood work re-done) you can still try the diet. Think of it as the "final" test. If his symptoms improve, you will know gluten is the problem. Keep a journal of his symptoms since the change can sometimes be gradual. You might not notice it at first.
Wheat flour can stay airborne for hours and eventually settles on everything. My son is so sensitive to cross-contamination, I don't bake with wheat flour in our home at all and we rarely eat out, even if a "gluten free" menu is available. If there is flour in the kitchen, the risk is too high. I would not have my child be in the classroom where cooking projects take place. Not even when they were not cooking. Bringing in our own equipment and providing gluten-free alternative wouldn't even be an option because the other kids would be using wheat flour . . .the room is already contaminated. Just not worth it. If your child doesn't have a 504 plan, get one. In it should be that he can be exempt from this particular class. - or, the "non-cooking" portion of it could be taught in another location.
Simply wiping down the counters would not be enough to ensure my son's safety and I'm sure the school wouldn't want to fully "decontaminate" the room daily . . .
However, learning to cook is an important skill, especially for someone with Celiac. Teach him at home or try to find a safe alternative. We have a bakery here that does classes with kids but they only do sweets . . .
A negative biopsy only means damage was not found, not that it was not there. The biopsy can only confirm a celiac diagnosis, not rule it out. If you have symptoms and a positive blood test, the "final test" would be to try the diet. If your symptoms resolve (and your blood returns to normal) you can be 100% sure.
It is much more likely that your biopsy was falsely negative than your blood test falsely positive.
Your child has symptoms AND a very positive blood test. It is likely that your child has celiac disease. (I would guess you do too, given your issues as well.)
Get a new doctor.
The reason they give the whole panel of tests is because everyone reacts differently and giving a variety of tests makes it more likely that the problem will be uncovered.
My son was positive on only the IgG tests (IgA tests all normal, and he produces sufficient IgA) and he was found to have extensive damage when he had his endoscope. He also did NOT have the genetic markers, or any classic symptoms - further confusing his doctor.
I was positive on only the IgA tests and negative on all the IgG tests. My endoscopy came back normal but I clearly have Celiac too. I had all the classic symptoms and they all disappeared when I went gluten free.
Remember, even if you go ahead with the endoscopy, they may not find any damage or there may not be enough to measure (yet). This DOES NOT RULE OUT Celiac Disease.
Why doctors want to wait until there is damage is beyond me. Your child is uncomfortable and you have positive blood tests telling you why.
If you have a Celiac Support group in your area they should be able to advice you about pediatric GIs who are knowledgeable and up to date on diagnosing kids with celiac.
To save time, here's the text of what was in our 504 plan:
Information for 504 Plan for Celiac Disease
Date of diagnosis: March 2011
Amount of time on a gluten-free diet: 3 years
OVERVIEW OF CELIAC DISEASE
Celiac disease is an autoimmune disorder that damages the small intestine and interferes with proper absorption of nutrients. People who suffer from celiac disease cannot tolerate the protein gluten found in wheat, barley, rye and most oats. Gluten is widely used in processed foods and can be difficult to detect by just reading the label. In addition, there are some hidden sources of gluten both in food and in unusual items such as art supplies and postage stamps.
Celiac disease is not an allergy. Exposure to gluten does not cause anaphylactic reactions. An Epi-pen or other medical intervention is not needed. The only treatment is life-long adherence to a 100% gluten free diet. Even small amounts of gluten (due to cross-contamination of eating surfaces or cooking equipment) will make Joe ill and trigger an autoimmune response.
Joe should only eat food that is:
· brought from home.
· in a sealed package that is clearly labeled “gluten free”
· previously determined to be safe (he will recognize)
· approved by parents (just give us a call)
SYMPTOMS / SIGNS OF INGESTION
There are a variety of symptoms that children may display when exposed to gluten. The symptoms can change over time so we are not really sure what to expect. In the past, Joe has developed gastrointestinal (GI) upset manifested by vomiting, diarrhea, gas, and bloating. A stomachache, headache, and/or achy joints have also occurred. He has also had behavioral symptoms such as irritability, inability to concentrate, restlessness, or sleepiness. Symptoms can come on suddenly or occur a few days after ingestion. Symptoms can continue for several days or even weeks after ingestion.
ATTENDANCE / ABSENCES
In the event that Joe accidently ingests gluten, he may be absent from school for several days. Teachers will work with parents to ensure he keeps up with his schoolwork while at home, if possible.
MEALS AND SNACKS
Joe will bring all meals from home. There is no need at this time for the BPS food service staff to be involved.
The teacher supervising the lunchroom should remind Joe to wash his hands with soap and water prior to eating.
To avoid cross-contamination from the table surface, Joe should be reminded to use the placemat provided. When a plastic placemat is not available, a paper towel or napkin can be used.
Joe should be allowed bathroom privileges whenever necessary and without negative consequences.
It would be helpful to establish a “signal” to alert the teacher when there might be an emergency that would require him leaving the classroom immediately without waiting for permission.
CLASSROOM PROJECTS / ACTIVITIES
Products commonly used in the art room will be reviewed to determine that they are gluten free.
The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.
Joe will be excused from activities that involve working with wheat flour as it can become airborne and settle on all surfaces including in his hair and clothes.
All classroom surfaces will be thoroughly cleaned after being exposed to wheat flour.
Teachers will require Joe to wash his hands after handling known gluten-containing products (playdough, papier mache, etc.)
CLASSROOM CELEBRATIONS / REWARDS
A box of snacks and treats is provided by the family and is to be kept in the classroom. Teachers will notify the parents when the snacks need to be replenished.
Teachers will give the parents 24 hours notice of any special events that involve food so that a safe alternative can be provided.
FIELD TRIPS / EXTRACURRICULAR ACTIVITIES
Teachers will communicate to the parents if food will be provided as part of field trip.
Parents will determine whether food is gluten free and/or provide student with a safe alternative.
Parents will have the option of keeping a child home if no provisions can be made without penalty to the student.
School staff that have regular contact with Joe should be aware of his condition and trained to recognize any signs or symptoms that might indicate a possible accidental or known exposure to gluten. Joe’s #1 symptom is a drastic change in behavior, so anything unusual should be noted and shared with the parents.
The school will insure communication systems are in place to inform persons who need to know (i.e. substitute teachers, speciality teachers, etc.)
The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.
If Joe inadvertently ingests gluten, his parents should be notified as soon as possible.
Staff will be aware of food “bullying” and notify administration and parents if it occurs or is reported. Reported incidents will be handled in accordance with the BPS Anti-bullying policies.
EMERGENCY EVACUATIONS / SHELTER IN PLACE
The school evacuation plan will be reviewed to see if provisions need to be included to accommodate Joe’s diet restrictions.
Shelf stable meals/snacks (boxed GoPicnic meals) will be provided by the family and stored in the classroom in the event that students need to shelter in place for an extended period of time. Food will be returned to the family at the conclusion of the school year.
Mother: Cara Xxxxxx H) xxx-xxx-xxxx C) xxx-xxx-xxxx
Father: Paul Xxxxxx W) xxx-xxx-xxxx C) xxx-xxx-xxxx
Dr. Andrea Reilley, MGH Back Bay
388 Commonwealth Avenue
Boston, MA 02215
Gastroenterologist / Celiac Specialist:
Dr. Dascha Weir, Children’s Hospital Boston
300 Longwood Avenue
Boston, MA 02115
Your story sounds much like ours. Our teachers were great at being accommodating, but if there was a mistake, I had no recourse without a 504 plan. Once I looked into the plans, I realized how much could go wrong and knew it really had to be in writing. As your child gets older, things like missed school days will also become more serious.
My son was also diagnosed with Aspergers a couple of years after going gluten free. The school REALLY dragged their feet with setting up a IEP for him because academically, he was far above the other kids in his class (not uncommon for Aspergers). They kept telling me that as long as his access to the curriculum was not hampered by his "disability" there was nothing for them to do. In his evaluation, it listed Social Skills Training as a needed support, so that was really all I was asking for. The school told me there were no other children enrolled (800 students, Boston Public School, really?) with Aspergers and so there wasn't even a Social Skills group for him to join.
The minute I let them know that I had read the state mandates (social skills are covered, separate from academic skills), knew what he was eligible for, and would not take no for an answer (I may have also hinted that we had been in contact with a lawyer even though we were not) they called a meeting and set it all up.
The weird part was that they said that since he now had an IEP, he could not also have a 504 plan, even though they were separate issues. They turned his 504 plan into a "health care plan" on file with the school nurse and left it at that. He will be changing schools next year and I plan on getting both the 504 plan and the IEP. It was really frustrating and sad. I bet the majority of parents don't have the time or energy to fight it and I wonder how many kids are getting left behind. We weren't even asking for much at all. . . 1 hour a week for a social skills group. Nothing more.
Don't give up and make sure you know your rights. Do not trust what is being told to you and get all responses in writing. I knew the coordinator was being shady when she would call me on the phone rather than respond to my direct questions in writing (email).
As for the clean eating surface . . . I do not trust the cafeteria staff to clean the tables sufficiently (the rags they use are pretty gross) and my son is a typical 9 year old . . . doesn't want to seem different and certainly doesn't want to wash the table before sitting down. We found a cool lunchbox that unzips to become a "placemat" of sorts. He loves it and doesn't feel weird using it.
I'd be happy to share the text from our 504 plan to give you an idea of what we included. I got lots of advice from this forum as well as other sources. Just send me an email at : firstname.lastname@example.org