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
My son was diagnosed Type one at age 9 (2003) and celiac the following year. Erratic blood sugars were occuring for about 4 months prior to diagnosis ... his sister was diagnosed celiac first, then they tested Matt immediately - and confirmed by biopsy. His outward symptoms were not as pronounced as his sisters - yet he had way more damage to his villi on biopsy.
Going gluten free will likely help those erratcic readings.
The damaged villi are inflammed so the body is in a constant state fo trying to repair the damage.
Carbohydrates are absorbed in an "uneven fashion".....sometimes they are not absorbed well or the opposite effect "carb dumping" as they are absorbed too quickly...this is what can cause unexpected highs and lows in a diabetic.
First off , I understand how you feel and it must have been very difficult to sit there and watch them eat food you cannot have ...it was probably esp hard because you have only been on the diet for 3 months - all the emotions are still pretty raw and you feel a sense of loss (loss of choice in food).
You ate before you went out and did not know others may want to stop for lunch.
Another perspective - is that the family and friends are still learning too - this whole "gluten free" thing is difficult to "get" early on.
Perhaps next time - if someone else wants to eat and you are hungry too - do not think of it as having others revolve around you. Its simply choosing a restaurant. They can choose gluten items or other tasty items at the salad bar...allowing you to eat and enjoy a meal.
An approach that has worked well for me is:
I really can't eat anything at that restaurant and I am hungry too, do you mind if we went "_______". (as another poster suggested). Both my kids are celiac so it teaches them how to handle these situations.
Its not like you are telling them to order what you order..
I am guessing that it may have been easier to watch other people eat whatever choice .....if you had been able to chow down on some gluten free choices.
If the others knew you were hungry too and chose that restaurant knowing you could not eat there - is much different than choosing the place and not thinking about the gluten free aspect of dining out. The latter requires education and also requires you to communicate to others ....give your mom a list of restaurants that have food you can eat.
This is a hard diet to follow in a gluten filled world..... chin up ... you are not over reacting...just reacting as any normal person would to a life changing diagnosis..... and wishing family and friends would think of you when they make decisions like this.
Just remember - most people dont mind choosing a different restaurant - they can always go back another day and get that pizza or pasta if they really want it.
Hope this helps.
The way I told my kids is: the gut is inflammed and damaged. The good nutrients are not absorbed very well so the stuff your body needs to function well - just passes on through. Then because the lining is worn away from inflammation (I liken it to a skinned knee)...so bad stuff - bacteria, and proteins that normally shouldnt get past the "barrier" of normal tissue get into the body. Yes it does trigger an autoimmune response which is systemic, in addition - all this other stuff is going to the brain, nerves, muscles etc..which leads to a cellular response in various organs and this is why the symptoms are so varied among celiacs. My daughter had neurologic symptoms and my son had muscle aches and pains as well as bed wetting.
Back to the skinned knee - I use this analogy because they can visualize the scrape - they see it can get infected...and how the healthy intact skin is not red and oozing. Basically the difference between a heathy gut and a damaged one. Very simple and it gets the point across without a bunch of medical terminology.
So I told them, by eating gluten free the gut can heal and function as a normal barrier to bad stuff - just like normal skin does on the outside of our body.
Hope this helps.
Welcome - and keep reading this site! Lots of excellent suggestions already.
My son is 14 - diagnosed Type 1 at age 9, and celiac at age 10. Huge difference in blood sugars after going gluten free. The intestine in a celiac who has not gone gluten free (not diagnosed) is inflammed and villi are damaged which leads to erratic absorbtion of carbs.
It WILL get easier - my daughter is almost 16 and is celiac too. Brown bagging is the only way to go to prevent cross contamination and the resulting physical symptoms or erratic blood sugars.
It is overwhelming at first but once you get better at the diet and making homemade pizza crusts or finding a frozen shell that works, finding fun / safe food gets easier.
I make pizza the night before and my son figures out how many slices he needs (carb wise), packs it to school and microwaves it - they both know to put it on paper towel or a paper plate since the school microwaves always have bread crumbs etc in them. Soon after he did that - his classmates were actually jealous that he gets homemade pizza in his lunch and it looks so good.
Corn chips / cheese and salsa with a juicebox and/ or some fruit / veges.
Rice paper sandwiches - now this took some time to master - working with rice paper!
meat roll ups with a fruit choice and or veges with dip
sandwiches (we use the tapioca bread mix by Kinnickinnick)
chicken salad - the way my daughter likes it - she puts it together in a container with the lettuce and sliced / diced chicken and whatever else she wants, puts ranch dressing (gluten free of course) in a separate container, and then mixes it together at lunch, Very few carbs so you would have to add some carb food to meet the needs of her diet/insulin
Have her help you in shopping for lunch food, get her to create a list of favorite food and find gluten-free alternatives. I found some recipes on this site that are fabulous - for cookies, donuts etc. For those days when a treat would be nice
It is a double whammy in the sense that you have to learn all over again - the various foods and carb counts....and Deal with the emotional impact of yet another dietary restriction for her... but depending on her personality - she may see it as a challenge or something to rebel against. Have her involved as much as possible in food decisions and show her that even if a certain item tasted like cardboard or was a disaster in the kitchen - Get messy and make mistakes! Try again, try various products. It will give her a sense of control and power.
and look at the recipe section here and keep reading threads about snack / lunch ideas for school. There have been a several threads in the past.
You are not alone and neither is your daughter.
There will be "oopsies" in the beginning and learning curve - just like it was when she first diagnosed Type 1.
Nightshades refer to plants that grow at night - and there is also another group called Morning glory plants - they grow in the morning part of the day!
Nightshades include: potatoe, tomatoe, peppers and eggplant.
My daughter cannot handle potatoe at all, but can handle tomatoe sauce in homemade chili ( no peppers) and ketchup. She doesn't like actual tomatoes (fresh) so never tried them for a reaction.... I know the reaction: "eeewww, mom I dont like tomatoe"
it is not just this company/ Labelling laws for pet food manufacturers ARE different than for human food. There was a thead about this a while ago. They do not label it as wheat free - just free of "added gluten"...and many leave out the word "added"..it is a more common claim on pet food bags since the whole fiasco with contaminated gluten source from China that led to many pet deaths.
So now pet food companies want to let it be known that they use whole grains rather than just gluten that could be contaminated.
Is it right? No, it leads to confusion for those of us who are used to that label on human food. A majority of the popualtion of pet owners dont even know what gluten is - only that it killed pets when it came from China.
Is it legal? - yes, because it is not meant for human consumption. As far as I know there is no company that produces pet food in a dedicated gluten free facility.
edit - add on - there ARE foods free of gluten for pets, see post below. They are produced in facilities that also make gluten containing pet food
As said in previous post, no unless you have an endocrine issue.
Celiac is an autoimmune condition - not an endocrine issue. Autoimmune conditions do occur more commonly in someone with another immune mediated illness, but it doesnt mean it will happen.
My children see an endocrinologist, but they both have endocrine issues - the celiac is addressed by a GI doc and he is aware of the link bnetween celiac and other conditions so he consults with the endo if he has questions about symptoms.
A GP can also test for conditions like thyroid, adrenal or diabetes and refer you if needed.
Part of what I understood from the article is that IF they can genetically alter the wheat to remove gliadins - it will still retain the binding quality that wheat is used for...and as they state:
if they can come up with this magic wheat - then manufacturers could use it instead and more products would be "safe" for celiacs,,
But IMHO :
1) manufacturers have always chosen the cheapest product and the genetically altered wheat - if it was ever marketed , would be expensive
2) growing, harvesting and processing would encounter the same issue as OATS do now - contamination along the way from gluten crops. Would require a dedicated facility = $$$
3) I am always leary about genetically altering mother nature - be it cloning cattle or modifying plants
I agree with :
Wheat may have been "mutated" over the centuries but it has always had gluten in it.
What disease will be created when people react to the new and improved wheat? The gliadin will be altered/missing or whatever but a new protein will be introduced...
A very high blood glucose and/or ketoacidosis can cause abdominal pain. But you would also be feeling very crappy (speaking from experience). Abdominal pain can result form so many conditions everything from severe gas to ileus (gut is at a standstill)and hundred other causes.
Itchy skin can be from a number of different causes including dry skin related to soap use or food intolerances . (dairy, egg, nightshades etc)
Cloudy urine is seen when there is:
Phosphaturia, pyuria, chyluria, lipiduria,
Diet high in purine-rich foods (hyperuricosuria)
Phosphaturia = Phosphates / inorganic salts in urine
Pyruria = pus / white blood cells in urine(urinary tract infection)
Chyluria = chyle in the urine (from lymph system) , rare condition, can be also be seen in pregnancy and after chidlbirth
Lipiduria = fat molecules in the urine / seen in nephrotic syndrome
Hyperoxaluria = presence of oxalate crystals in the urine. Usually dietary...A high intake of oxalate-rich foods (eg, chocolate, nuts, spinach) and a diet rich in animal protein can result in hyperoxaluria. Low dietary calcium intake can also result in hyperoxaluria via decreased intestinal binding of oxalate and the resulting increased absorption. Ascorbic acid can be converted in oxalate, resulting in increased urinary oxalate levels.
Hyperuricosuria = uric acid or urates in the urine. Seen in Gout and diets high in purine. Purine rich foods include: Beer, other alcoholic beverages. Anchovies, sardines in oil, fish roes, herring. Yeast. Organ meat (liver, kidneys, sweetbreads) Legumes (dried beans, peas) Meat extracts, consomme, gravies. Mushrooms, spinach, asparagus, cauliflower.
If you are concerned about cloudy urine, the see your doctor.
My son was diagnosed Type 1 at 9 yrs old and celiac at 10yrs old. He is now 13 (14 in Sept!)
His blood glucose levels stabalized once his gut healed. It is overwhelming to be sure!
The dietician at the Childrens' hospital worked with us and addressed concerns. We had to learn the weight/ carbs for the gluten free pastas and breads and see how gluten free foods affected him.
Fruits/vegs and unprocessed meats are all gluten free.
You are not alone and you will get through it. My initial reaction was that it just seemed unfair after all he went through adjusting to the diabetes and now THIS.
I can tell you that he is a boy scout who backpacks with his troup, camping along the way. eating Thai noodles with bovril added (he doesnt like the flavour packets that come with the bowl), plus freeze dried chicken and dehydrated peas), gluten-free crackers, gluten-free cereal bars and muffins, cheese, pepperoni sticks (Grimms and Freybes are gluten-free), trail mix, dehydrated apples and banana (we have a dehydrator) and all sorts of stuff. He even winter camps like this!. Currently he is assisting at a cub camp learning leadership skills. The leader is familiar with diabetes as she is also the scout leader and her husband is Type 1.
He is not on a pump - he prefers the syringes. I have not forced the insulin pump idea as this is his disease / his choice.
If he had been diagnosed as a toddler - I definitely would have gone the pump route like you have - simply because it is easier in young children and allows for better control since their appetite is so variable.
Just wanted to say - yup - we deal with it too .... it's another learning curve.
We do the carb counting / insulin ratio so it was a matter of learning what amounts of gluten-free food equaled what amount of carbs and going from there.
I have been Type 1 diabetic since age 25 - neg for celiac but gluten intolerant. I am not on a pump.
We also have to avoid potatoe with our daughter.
Hang in there, Will be thinking of you.
Food we find at the regular store: [in addition to fuits/veges/eggs/cheese/yogurt/ ]
Freybes and Grimm's meat
Zesty cheese doritos
Kraft Ranch dressing
El Paso taco seasoning mix
hash browns (Delnor is the gluten-free brand at this store)
Campbells chicken and rice soup
Campbells Healthy Request New England Clam chowder (the regular one has gluten - the Healthy request clam chowder does not)
Food we order online (Kinnickinnick) or find at stores in the city (we live in a small town):
brown rice pasta
Amy's tomato soup
Tapioca bread mix (Kinninkinnick brand is the one my kids prefer)
all purpose gluten-free flour mix
brown rice tortilla shells
Qunioa ( we mix it with rice and cook it together)
It may help to ask your child's dietician or a local celiac chapter to send you some information about label reading for gluten. They should be supporting you in this journey.
Hope this helps - its a short list. Other than the 2 soups I mentioned - I think all other Campbell's soup have gluten in one form or another.
The symptoms of diabetes are not so much craving sugar.... as it is craving carbs of any kind...this is because the body doesnt have sufficient insulin to use the sugar that's there so the body thinks it is starving.
Type 1 - craves food, fatigue, drinks and pees excessively and loses weight - this can occur in anyone under the age of 30. It is autoimmune and islet cells are destroyed = no insulin. Symptoms are fairly rapid in onset and get worse
Type 2 - also drinks a lot, pees a lot, may have weight gain or weight loss, fatigue,leg aches. Often over produces insulin but for some reason it does not work effectively. Symptoms may seem to come and go for some time and gradually get worse.
If you suspect you have diabetes or symptoms that concern you - they can do a simple urine test or blood test.
...and yes anyone with an autoimmune disease (celiac or other) is prone to other autoimmune diseases. Its doesnt mean every celiac is at risk but anyone with one autoimmune disease should be aware of unusual or peristent symptoms and have them checked.
Priests will make accomodations for celiac. They can have a separate chalice and you receive from that cup. This is how my children receive communion. The main chalice has a piece of host added so it is contaminated with gluten.
You can also order hosts from the Benedictine sisters which are acceptable to the Catholic doctrine:
You can read about how they make the wafers and you can also see that they do understand that gluten causes intestinal damage. Some choose this route so they can receive the host, while others choose the Blood of Christ alone (without the host added). Receiving the Blood of Christ alone is still Communion in full according to the teachings of the faith.
Oh man - can I relate! From family to doctors! Luckily I am now at a place where we have an excellent bunch of specialists and doctors who listen to me! It was a long journey though. With the Aspergers - I felt joy at finally understanding my daughter's world when they diagnosed her. My sister was judgemental and said : "Who told you THAT?"
Celiac - during the time that led up to the diagnosis - extended family was questioning my trips to the doctor and I should realize she may just be "one of those kids that complains about every ache and pain". So I stopped telling them and just advised them of the diagnosis when it was confirmed. In my family - unless a doctor says the kid really does have problem....then I am the mommy who worries too much and can't just relax and enjoy life.
Even with the Kawasaki and cardiologist confirming the coronary arteries were dilated - my sister (the nurse ) proclaimed: "How do they know they weren't that size to begin with?" umm okay now she is questioning the cardiologist
The only diagnosis everyone accepted right away was: the diabetes in my son. ... of course some had to make sure I knew that he "got it from me" (umm okay that's a helpful comment )..
The gluten free diet has helped my daughter tremendously! Huge inprovment in energy, attention span, ability to cope, concentration....and of course her overall health .
Just wanted to say that you are not alone and in fact - you are in the majority here! Trust your mommy instincts and ignore those who try to undermine your intuition and observations.
When my daughter was little, I too had someone say "Lots of kids don't like hugs" (my daughter did not like us to hug her). So I asked them: But does your kid recoil when touched? Does your kid prefer to play alone at an age when most kids love other kids around? Is your kid sick more often than not?
So I was branded defensive and in need of "help"... I just ignored them and decided that I would limit my interaction with family members who were not helpful and prefered to judge me rather than practice empathy.
Welcome to the world of glulten free and many other moms who can relate!