the difference with gluten sensitive / intolerance?

Options
lin7604
lin7604 Posts: 3,019 Member
in Health and Weight Loss
my son had blood work and it came back positive for i guess celiacs, he goes for a biopsy of friday. I hear so any that say he could just have a slight sensitivity and by just limiting gluten foods will help and others i hear say they are intolerable to all gluten. how do you know if yours is mild and just a sensitivity kinda like lactose for me or if you are completely intolerable to having any and being celiacs..... he only had a bout of tummy aches and headaches last dec that lasted no more then 2 weeks and then nothing again till this Aug, again never lasted more then 2 weeks. so a once a year episode makes me wonder?
«1

Replies

  • lyttlewon
    lyttlewon Posts: 1,118 Member
    Options
    I don't have celiacs but I have auto immune disease and my family has a history of auto immune disease. The way these things work typically, is starting out mild when you are young and ramp up in severity as you get older. The level of the diagnosis will probably change your doctors recommendations. Also a disease like celiacs will have a lot of underlying repercussions that you may not see the symptoms of, or if you do you don't recognize they are symptoms of disease.
  • lin7604
    lin7604 Posts: 3,019 Member
    Options
    ok so what is the difference having a autoimmune disease compare to celiacs? they told me there can false positives, and the blood work just shows autoimmune cells or something but not specifically celiacs? i guess that is why they want to do the biopsy but i just wasn't sure why some have told me you can have a sensitivity to gluten or wheat like a bit of a allergy but it's not celiacs...
  • ktouton
    ktouton Posts: 20 Member
    Options
    Celiac is an autoimmune disease. The body does not know how to handle the wheat and the villi (small, hair like fingers in the small intestine) become flat, blunt and do not work. My son was diagnosed with Ceiac (by biopsy) 3 1/2 years ago. He was almost 13 at the time. True Celiac affects 1 out of every 133 people world wide. It is estimated that 1 out of 100 Caucasian Americans will have Celiac. Most with the disease do not know they have it (upwards of 95%). It typically takes 8+ years before a correct diagnoses has been given. In children the average is around 8 different pediatrician visits before going to the pediatric GI doctor. Celiac is a genetic condition. One or both of your parents must have the gene for you to get the gene. There are rare cases (less than about 5%) of people having Celiac symptoms, including damage to the villi and not have the gene.

    Kids heal quicker than adults. My son's TtG number was 108 (should be less than 7). After 6 months of being totally GF his numbers look like he doesn't have Celiac.

    I have the gene. My blood work did not warrant a biopsy. I went GF with my son and have never looked back. When I do get contaminated it is all in my belly and lower GI system. Normally it only occurs with a cross contamination type thing. The exception to that is name brand Synthroid which cannot guarantee it is GF. I was sick for 2 weeks and could not figure out what was going on. I had to back track and realized I had gotten a new script. I emailed my doctor about switching to generic Synthroid and I have not had a problem with the medicine since. I tell medical personal that I am Celiac, but since I haven't had the biopsy I am really just intolerant.

    My son says he has never been "glutened." I am not sure I believe him.

    Right now the "gold standard" is to do a biopsy on the small intestine. GI doc's are talking about having it be something like 5 out of 6 criteria. But that has not happened. A "good" biopsy will look for Celiac in many locations in the small intestines. I believe it is around 10. Only looking in 1-4 sections and the doc may miss it.

    Up to 40% of the people who follow a strict GF diet are better in 1 year. It takes adults MUCH longer to heal than children.

    I am one of those people who gained weight by going GF. I put on 30# in about 30 days. My body could finally absorb all the nutrients in the food. I have finally gotten serious about loosing that weight and the weight I gained from 9 weeks on steroids a few years ago. I think it is funny when people go GF to loose weight.

    We try to not replace gluten filled foods with gluten free foods. Occasionally, we have bread or bagels. We have pasta maybe 2 a month, not counting Mac and Cheese. That might show up an additional 2x a month. Typically, GF foods are made from rice, corn, potato or tapioca flours/starches. These replacements are typically less nutritional than gluten filled flours.

    I hope this helps. Celiac Disease can be very, very confusing.
  • lin7604
    lin7604 Posts: 3,019 Member
    Options
    thank you so much for all that info. i know they did say they were taking a few samples in his esophagus, stomach and small intestine. He really doesn't have issues with eating it as he hasn't had any tummy troubles, etc he is symptom free, the only reason why we went to the dr was b/c of headaches, really.....it seemed it appeared in blood work and i had no idea what it even was..... Thanks for mentioning the number, i am going to ask what his was on fri when he goes for the biopsy, they just said to me it was elevated... but how much? I also go for blood work this month so i will ask them if they can test me for that as well....

    i went to our local store today to see what we have to prepare myself and WOW not much to choose from ( compared to the united states) and wow was it pricey! 7.99 for a small loaf of bread, 9.99 for a small bag of rice noodles... wow... the whole family won't be able to join him on this journey, it will be too costly but i didn't want him to feel segregated by eating alone...
  • Cerebrus189
    Cerebrus189 Posts: 315 Member
    Options
    A great choice would be to switch the whole family to Paleo/Primal. It's already gluten-free.
  • lin7604
    lin7604 Posts: 3,019 Member
    Options
    can you explain more, i know nothing about either?
  • ktouton
    ktouton Posts: 20 Member
    Options
    If you have a Trader Joe's near you they are pretty reasonable. Many times a health food store is a better choice than your local chain grocery store.

    If your child does have Celiac you need to take cross contamination very seriously. I have things like peanut butter and jelly lids labeled GF so people know not to stick a knife in them if it has touched bread. I would also recommend getting everyone in the house tested, if your child is positive. Celiac is a genetic condition. Therefore, one or both of the parents must have the gene. Many people have the gene and live their entire lives without developing the disease.
  • lin7604
    lin7604 Posts: 3,019 Member
    Options
    i thought that if you have it very mild cross contamination isn't a huge deal. More so only if you are serious and get serious reactions? I have read so many things i am getting confused..... i didn't think if it's very very mild and have no reactions you don't have to treat it like you have a Anaphylactic reaction... like some get with nuts, etc

    oh and no we don't have a trader joes. safeway, sobeys and superstore
  • Lina4Lina
    Lina4Lina Posts: 712 Member
    Options
    I suggest you read up on celiac disease. Here is a link:
    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/

    Basically, some people may believe they are sensitive to gluten without celiacs disease. This may be that they eliminate gluten foods from their diet and feel better. It could be a result of gluten sensitivity or it could be a result of something associated with foods that have gluten in them or it could be psychosomatic or who knows. I would also suggest a celiac test for the rest of the family BEFORE you give up gluten. Celiac can only be tested positive if gluten is actively in the diet.
  • ktouton
    ktouton Posts: 20 Member
    Options
    With Celiac there is no anaphylactic reaction. Everything happens in the intestings. Some people have dermatitis herpetiformis, which is a skin condition and presents itself to people with Celiac.

    However, any contamination, no matter how small or slight, prevents healing and can cause damage if you have already healed. This is very real and serious.

    This is why Dominos has a statement that says their pizza is not meant for Celiacs. They use the same utensils for all pizzas. The laddle that puts sauce on a gluten filled pizza will be used on a GF pizza and will lead to contamination. The same would hold true in your house. Some utensils hold on to gluten better than others. A old metal colander will keep gluten in nooks and crannies even after being washed and you might need to replace it.
  • lin7604
    lin7604 Posts: 3,019 Member
    Options
    so then how can these places sell GF pizza crusts is it's not really going to benefit ones with the problem?
  • sneakysneaker
    sneakysneaker Posts: 16 Member
    Options
    Hi, My Dad is Celiac but didn't get diagnosed for years. It got worse and worse (giant hives, fatigue, stomach pain). So even if your son has a mild case now you may want to switch to GF.

    As far as eating GF, homemade bread tastes the best. You can try going into an Indigo or Coles to check out the cookbooks (there are usually GF ones easily available now). The basic ingredients can be expensive and as there is no gluten (the binder in the recipe) it can be frustrating to bake (very fine powder all over the counter, cookies that won't hold together, bread that doesn't brown). Healthy Gluten Free Life is pretty good: http://www.amazon.ca/Healthy-Gluten-Free-Life-Delicious-Dairy-Free/dp/1936608715/ref=sr_1_1?s=books&ie=UTF8&qid=1347070638&sr=1-1

    Loblaws (and some Sobeys) have a great GF section in the freezer but be careful as a lot of prepared foods and mixes (especially the cake mixes) have crazy high sodium and sugar content. Bob's Red Mill also has a pre-mixed GF flour that you can use.
  • lin7604
    lin7604 Posts: 3,019 Member
    Options
    thanks. we had the biopsy done yesterday, they took 7 samples and we will know the results in 4 weeks... the dr said when he was done was he wasn't that sure it was... so we have to wait for the results.
  • ktouton
    ktouton Posts: 20 Member
    Options
    My guess about the pizzas is for people like Lady Gaga who are on the diet because they want to loose weight or some other non-medical reason. I know most of the 5 Guys I go to ask if me if there is a medical reason for no bun. I can think of a few other restaurants who ask the same question.
  • lyttlewon
    lyttlewon Posts: 1,118 Member
    Options
    so then how can these places sell GF pizza crusts is it's not really going to benefit ones with the problem?

    Because there is a drastic difference between gluten intolerance and Celiacs disease.
  • lin7604
    lin7604 Posts: 3,019 Member
    Options
    so then what do people that have celiacs eat when eating out?
  • ktouton
    ktouton Posts: 20 Member
    Options
    so then what do people that have celiacs eat when eating out?

    It depends on where you go. Some places are very conscious of cross contamination. A local pizza place near me has different sauces, cheese and toppings for people with Celiac. We have a sub shop near my work that has 2 "lines" to create the sub. One is for GF and one isn't.

    Some cuisines are more difficult than others. Many Asian places are off limits because most soy sauces have wheat in them. Most Mexican places have an abundance of wheat. But, I know of many different Italian places that offer GF pasta. Believe it or not, many restaurants add wheat to their butter sauces. I am not sure if it is to thicken it or to prevent it from going back to a solid or what.

    The key to eating GF is to eat foods that are naturally GF. Fresh fruits and veggies, unprocessed meats and cheese are all good choices. It just takes a lot of patience and asking a lot of questions.
  • Bridgenosis
    Bridgenosis Posts: 1
    Options
    For those in with a mere gluten intolerance, there's a chance to glean wisdom from the body, make a positive change, and release the intolerance. Not only have I done this myself (I had a very serious intolerance but not celiac), but I have helped others. Read more here: http://bridgenosis.com/2012/08/how-eliminating-a-gluten-intolerance-with-hypnosis-helped-one-leader-get-promoted/.
  • opuntia
    opuntia Posts: 860 Member
    Options
    how do you know if yours is mild and just a sensitivity kinda like lactose for me or if you are completely intolerable to having any and being celiacs..... he only had a bout of tummy aches and headaches last dec that lasted no more then 2 weeks and then nothing again till this Aug, again never lasted more then 2 weeks. so a once a year episode makes me wonder?

    I imagine you'd know from the reactions. I probably have some gluten sensitivity - I am on the autism spectrum, I get quite a lot of gastrointestinal problems, I have a lot of food sensitivities, and reducing gluten can help. But at the same time, I can often eat small amounts of gluten with no problem. I assume if I had a proper gluten intolerance/celiac disease, this wouldn't be the case - I'd have to cut it completely. It's the same for lactose with me - I don't have lactose intolerance, but my wellbeing has increased considerably from cutting milk out of my diet. I still have cheese and yogurt, and very occasionally I have cooked milk in a meal - if I were properly lactose intolerant I wouldn't be able to do that.

    My own approach has been to experiment with food and find out what I can eat easily, and what effects different foods have on me.
  • spiregrain
    spiregrain Posts: 254 Member
    Options
    I would be really cautious about eating at restaurants. I was almost asymptomatic before I was diagnosed with Celiac but my reaction to trace is pretty strong and I have enough scarring that after 7 years on a strict GF diet I still have malabsorption. So while you may think that being low on symptoms before diagnosis would indicate a lower reactivity, that's not always the case.

    If he gets "glutened" there's nothing you can do about it. He just has to be really sick for a while... no way to stop the symptoms. So in my opinion it is better to avoid getting sick than take risks and hope it's not too bad if it happens. One time I lost 35 lbs in a week from getting glutened because my reaction was so intense. :/

    My husband is diagnosed with non-Celiac gluten intolerance. For him, and for people who are following a GF diet because they think it is a health craze (LOL), the Dominos pizza (and most GF restaurant foods) would be safe. For anyone with Celiac, it's not. A lot of chains have a special "Celiac menu" but in my experience if you're at a chain that's not in an urban area the cooks won't be that careful because they don't have very many Celiac customers and as a result they don't get the seriousness of contaminating someone. I get served the wrong plate all the time and the only reason I know beforehand is because it happens so often that I am totally neurotic about examining my food. Before I go to a restaurant I check reviews of the Celiac menu online and look for places with reviews like "I am diagnosed Celiac and very sensitive, I eat here all the time and I've never gotten glutened". Otherwise I just eat in.

    To be honest I would steer clear of GF bread and pasta, and most of these "substitute foods". Most GF bread is not so good until you develop a taste for it which, personally, took me a long time -- and I am pretty open to wacky foods. And at $9 a loaf, the fact that it just tastes like stale low quality bread adds insult to injury. I would consider steering your whole household slowly in a direction that is lower gluten and consider getting your carbs from other stuff, like rice, quinoa, corn, whatever non-wheat grains are affordable in your area. There is a lot of good food that is inexpensive and healthy and doesn't price gouge you -- look to traditional foods from Asian and Latin American countries, for example, where rice and corn are more featured. My husband got a tortilla press and learned to make home made soft corn tortillas and they are amazing! They feel really decadent but they're not so hard to make and they are pretty much dirt cheap.

    Also depending on where you live -- look on amazon for the replacement gluten free stuff he likes that you can buy through their "Subscribe and Save" program. You just buy a case periodically and there's a discount. You will save a lot.

    I find that it's impossible for me to stay really GF if I am sharing a kitchen with others who eat gluten. That's the bad news. Not everyone is like that, but if he seems to be having problems, you might want to consider trying to get others on the family on board to keep him safe. It'll take time to get used to the new diet but at the end of the day if you're doing the cooking it's easier for you and safer for him if you make everyone a single GF meal to share.

    Here are some sites that have a lot of FREE gf recipes which I've enjoyed:

    Gluten Free Goddess
    http://glutenfreegoddess.blogspot.com
    (some wacky ingredients, depending on where you live, but lots of really tasty entrees)

    Post-Punk Kitchen
    http://www.theppk.com/blog/
    (not exclusively GF, but almost all recipes on here can be adapted and she tells you how, it's a vegan site but don't let that put you off!)

    I also am totally addicted to Isa Chandra of ppk's cookbook "Appetite for Reduction" which is a low fat vegan mostly-gf-and-anything-that-isn't-is-very-easy-to-adapt cookbook. It's like $10 and I eat something out of it every night. All the recipes are in the mfp database!

    PM me if you have any questions. Good luck! You can do it. :)

Categories