Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is Gluten Intolerace Always Hereditary?
0

6 posts in this topic

I haven't had any kind of testing done- I figured that if the dietary changes help, there's the positive test right there. I've just heard about too many false negatives to put much stock in lab tests.

OTOH, it would be nice to know exactly what I'm dealing with. Is this something I'm likely to outgrow as my gut heals? Do I really need to avoid all grains forever, or am I only allergic to wheat? Is it worth the effort (and expense) to take gluten out of my kids' diets too? All 3 of them, or does only one child need the gluten-free diet and the others can safely eat gluten away from home? Would it actually benefit them to feed them gluten-free foods I can't eat (I can't have soy, dairy, legumes, etc) or would I be making these changes just to avoid the risk of CC?

And finally, there are Halachic (Jewish Law) issues. It's required to have 2 loaves of bread on Friday nights ,and 2 more on Saturday with the Shabbos (Sabbath) meals. Bread is defined as something baked from wheat, barley, oats, rye, or spelt. If I'm allergic to wheat, for example, I could have bread made from rye or barley. If I have celiac disease, then I wouldn't be required to eat food that poisons me. I'm not sure what the Halacha (Jewish Law) says about guests or other family members- can they fulfill the challah requirement on gluten-free bread if they can tolerate gluten but others at the table can't?

I'm not sure how to approach a rabbi when I'm really not sure what's going on with my body right now. Besides, I can't currently tolerate any of the gluten-free "grains" that could be used in baking. I've been avoiding the challah (bread) on Shabbos altogether, and being super careful about crumbs- we use rolls instead of large loaves of bread and disposable plates for bread.

I'm not sure exactly what I'm facing here. Is it an allergy or sensitivity to gluten that sets off my Fibromyalgia? I know that cow's milk protein sets off a flare. Is my Fibromyalgia actually undiagnosed Celiac? Is Celiac ALWAYS heriditery, or is there a chance that my kids can safely consume gluten?

0

Share this post


Link to post
Share on other sites


Ads by Google:

I was originally diagnosed with FMS. 99% of my symptoms went away when I went gluten-free.

I realize you're going on dietary response, but if you do have any form of gluten intolerance, you will not grow out of it. Once you heal, you may be able to eat gluten without many symptoms, but you will still be doing damage and be setting yourself up for bigger health issues in the future. Note that this is an autoimmune disease, not an allergy.

As for the kids, if you have celiac, I would watch them very carefully for symptoms as this is genetic. I would lean towards making your whole house as gluten-free as you can, mostly for CC issues. I don't think it's a big deal if you buy gluten-free mainstream products like gluten-free yogurt and pasta sauce and salsa and corn tortillas. It will certainly make you life easier. As for the expense, try not to use a lot of gluten-replacement products like bread and crackers and cookies. Start baking on your own. I do nearly all of my shopping at a regular grocery store, being careful of the brands I purchase.

So, about the Jewish bread laws. I have no idea. I've seen similar discussions relating to Christian traditions and the communion bread - you might want to do a search on that. I think it generally depends on the church you go to and how strictly they interpret the Bible. I think you'd have to talk to your Rabbi about this one.

0

Share this post


Link to post
Share on other sites
I was originally diagnosed with FMS. 99% of my symptoms went away when I went gluten-free.

I realize you're going on dietary response, but if you do have any form of gluten intolerance, you will not grow out of it. Once you heal, you may be able to eat gluten without many symptoms, but you will still be doing damage and be setting yourself up for bigger health issues in the future. Note that this is an autoimmune disease, not an allergy.

So how do I go about getting an official test for this? I am NOT willing to eat gluten again for the sake of a lab test! Should I talk to the pediatrician about testing my kids before making any dietary changes for them? I'm not at this point restricting what they eat away from home, although I do plan to make my kitchen gluten-free (or close to it) for my own health and sanity.

0

Share this post


Link to post
Share on other sites

The best test is a biospy of the duodenum while still on gluten...it may be accurate for a short while after going gluten-free but itis probably individual how long the damage will still be visible .

I do not have the main genes (DQ2 or DQ8) and there are many here on the forums who were just as ill but did not show the right kind of villi damage uner a microscope......I think sometimes they are barking up the wrong tree, the doctors I mean. This is an autoimmune disease and I guess it wouod be better to expose the samples to gluten and then detect the antibodies, or something like that. Blood tests are not that accurate as the main issues are other places than in the blood.

There are some tests for gluten intolerance, a stool test that detects antibodies , but it is not an official celiac test. And, there are antigliadin blood tests but they are not so specific for celiac but very specific for gluten intolerance (many doctors do not believe in gluten intolerance)

I am in europe and here we usually get sent to an endoscopy for biopsies. They also want to take a look to see if there are other htings going on. IBS is also a possibility, or Mb. Crohn or Ulcerative Colitis. And, celiacs are more prone to certein cancers of the intestines if they continue to eat gluten so the doctors want tocheck if something like that is already going on.

nora

0

Share this post


Link to post
Share on other sites
So how do I go about getting an official test for this? I am NOT willing to eat gluten again for the sake of a lab test! Should I talk to the pediatrician about testing my kids before making any dietary changes for them? I'm not at this point restricting what they eat away from home, although I do plan to make my kitchen gluten-free (or close to it) for my own health and sanity.

The two traditional medical tests are the blood test and the scope - both of which will only be positive if you've been eating gluten and have a lot of damage. Some people here go through enterolab (enterolab.com). They test for gluten intolerance and will get a positive result much sooner than traditional testing so you don't need to have as much damage to get a positive. If you search on enterolab, you can read tons of discussions on this. Besides that, dietary response may be your only method of diagnosis at this point.

I went by dietary response myself. I'd done an elimination diet because that's what a few FMS books recommended and it was very obvious to me that gluten was an issue when I added it back in. I'd been (mostly) gluten-free for two weeks at that point and didn't get a positive blood test. I didn't care. I felt so much better I just wanted to get on with getting healthy and go back to living my life! If you are ok with not having an "official" diagnosis and can stay gluten-free without it, I don't see why it's necessary. Some people do need that piece of paper to force themselves to remain gluten-free, though.

I would get the kids tested soon. Even restricting gluten at home can alter test results. Also, if you kids do have it, they may not test positive because they're too young to have a lot of damage. Also realize that if your kids that don't have it now, they may still develop it later in life - something to look out for as they grow up.

0

Share this post


Link to post
Share on other sites




The best test is a biospy of the duodenum while still on gluten..

Lots of disagreement on this subject!

Many believe that dietary response is the most accurate form of diagnosis.

As far as hereditary, the predisposition is hereditary, but just because you are predisposed to get it doesn't mean you WILL get it. Something has to trigger it.

Many people with Lyme Disease have a kind of non-celiac gluten intolerance that is triggered somehow by the Lyme. Mercury toxicity can cause leaky gut, which is also linked with gluten intolerance. THere are probably a number of other situation I don't even know about.

As far as Halachic law, it depends on how Orthodox you are, and what you, your Rabbi, and your shul believe.

I make a sort of fake, gluten-free Challah--but it's not braided, because it's made from a batter, and you can't braid a batter. But it's very, very good, and even my gluten-eating family members like it (I have to fight them for it). I use potato starch and corn starch to make it (it's almost like it's Passover 365 days a year, except I can't eat Matzo and I can use leavening). If you have Roben Ryberg's Gluten-Free Kitchen--it's the Egg Bread recipe, and I add a teaspoon of yeast for flavor, and sprinkle the top with sesame seeds.

I have always been taught that Health comes first. Spelt, rye, and oats all contain gluten--having that on the table risks YOUR health, even if you don't eat it. But it doesn't risk anyone else's health to eat gluten-free Challah (unless they are somehow allergic to corn, potatoes, or eggs!)

Like most religious issues, it's very tough to discuss, as everybody seems to have very strong feelings about it.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,366
    • Total Posts
      917,513
  • Topics

  • Posts

    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • I have kidney stones...spent last night at the ER
      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate consumption...my urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming surgery...it really is always something!
    • celiac disease is psychosomatic
      I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined