Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Son (8) Sneaks Gluten Foods


lilgreen

Recommended Posts

lilgreen Apprentice

We've know he has celiac disease since he was 5.5. He and I both have it and we've both been gluten-free since. The problem is that he has 2 younger brother who don't have it and a foodie husband who can't fathom making our house gluten-free. Another problem is that my son's reactions to eating gluten are minimal... stomach ache and soft stools at the most.

So, I've noticed lately that he's been sneaking gluten foods like Ritz crackers and granola bars, other crackers, etc. I don't know what to do. He knows generally about how celiac disease works and why he's not supposed to have gluten, but without the harsh consequence of a nasty reaction, I'm at a loss of how to help him stay motivated to remain gluten-free.

I try as best as I can to have good foods in the house for him, but I admit there are times when his options are few.

Any suggestions would be a great help! Thank you!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mizzo Enthusiast

If it's possible you can try putting all the boxed gluten containing snack foods out of reach or locked away. Since his siblings are younger I assume they are not allowed to go get whatever / whenever they want so it could help!

My girl is 7 and she doesn't even know we have gluten foods because they are out of sight and out of reach.

Good luck

kareng Grand Master

but without the harsh consequence of a nasty reaction, I'm at a loss of how to help him stay motivated to remain gluten-free.

You're the mom, give him a consequence. Would be nice if his father was on board since this is for the health of the child.

You might want to not have gluten containing things he really loves. If Ritz and Cheez-its are his favorites with no good gluten-free replacement, the others can find a snack he doesn't like as much. We didn't have pretzels at my house for the first few months after I went gluten-free because they were my favorite. I'm an adult but it still bothered me to have them around.

You may have to lock stuff up and hand them out and watch that he doesn't get the other kids stuff if your husband insists that those are "good" food for the kids. Fact is, none of that is good for any of us but I do love my junk food.

Maybe you can go more for healthier snack for all. PB on apples, PB with gluten-free pretzels for all, cheese slices, popsicles... Or junk food that everyone can have like a little package of chips, small Snickers, Starbursts....

Good luck.

Darn210 Enthusiast

You might want to not have gluten containing things he really loves. If Ritz and Cheez-its are his favorites with no good gluten-free replacement, the others can find a snack he doesn't like as much.

No wheat thins, sun chips or panera bread bagels in our house since my daughter went gluten free. My son gets them on occasion when we run into them at other places (homes of family/friends). If I had allowed those three items in, I think my daughter would have had a lot harder time adjusting. The other day, my son asked for wheat thins again saying "she doesn't even remember what they taste like". My answer was "probably not, but she remembers they were her favorite."

Are there snacks in the house that only you and your son get to have? That might help even the playing field a bit. It needs to be something enviable. My daughter gets to have Kinnikinnick donuts and my son doesn't. I occassionaly hear "that's not fair" from him and I think to myself it is MORE than fair!!

T.H. Community Regular

I'd say first, I'd keep some of his favorite gluten treats out of the house because they are obviously tempting him a bit too much. Also, it's probably not a bad idea for your other two to eat more gluten free stuff, considering the high likelihood that, if they carry your celiac gene, the disease will trigger in them later in life eventually. Getting them used to a lot of these gluten free foods, and how to make them might be something that will help them later, you know what I mean?

If you need consequences and are looking for something logical? He doesn't get to go to crowded, special places for about a week after he eats something like this. Every time he gets gluten, he's immuno-compromised, so his chances of getting sick, and having a harder time shaking it, are increased for a week or two. As a result, he doesn't get to go out in large crowds where he's more likely to get sick.

I say this as a mom with an 8 year old boy who also has started trying to sneak gluten at some friend's houses now. He, too, doesn't have much of a reaction that he notices (he has emotional issues, for example, but the only one who pays for that is US. ;) ).

But if consequences aren't doing the trick, he may not be mature enough to avoid the gluten so readily available to him in the home. I'll be honest, if I were looking at possible solutions, foodie husband would be next on my list. He may have to consider whether his food hobby is more important than his son's health. :(

We've know he has celiac disease since he was 5.5. He and I both have it and we've both been gluten-free since. The problem is that he has 2 younger brother who don't have it and a foodie husband who can't fathom making our house gluten-free. Another problem is that my son's reactions to eating gluten are minimal... stomach ache and soft stools at the most.

So, I've noticed lately that he's been sneaking gluten foods like Ritz crackers and granola bars, other crackers, etc. I don't know what to do. He knows generally about how celiac disease works and why he's not supposed to have gluten, but without the harsh consequence of a nasty reaction, I'm at a loss of how to help him stay motivated to remain gluten-free.

I try as best as I can to have good foods in the house for him, but I admit there are times when his options are few.

Any suggestions would be a great help! Thank you!

my3monkees Rookie

But if consequences aren't doing the trick, he may not be mature enough to avoid the gluten so readily available to him in the home. I'll be honest, if I were looking at possible solutions, foodie husband would be next on my list. He may have to consider whether his food hobby is more important than his son's health. :(

I think it is time for a serious talk with hubby, sons medical needs should come ahead of his food. Tell him he can develop his talents, by trying new gluten free "foodie" items.

missy'smom Collaborator

keep stuff out of the house, just don't buy it

make/buy stuff that everyone can have

Have a talk with DH about some things, my hubby has been eating some stuff in front of DS and I more often lately that we can't eat and I've spoken up-he's been making french fries alot and I have diabetes and really can't have them. I'm really good about sticking to my diet and it's been easier because I'm not surrounded by so many things, but when he starts putting it on the table day after day, and the two of them, my family, sit there and eat it in front of me, it gets hard.

with my son(12) it's all about fitting in, having familiar, mainstream packaged stuff so I've made some compromises with my preferences and found such things that are gluten-free-lay's STAXX etc, then there's always air popped popcorn, that's always appealing, the gluten-free pretzels taste just as good as the real deal, expensive but maybe you can make up some snack mix with pretz, popcorn, CHEX, nuts, etc. that everyone could enjoy


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CeliacMom2008 Enthusiast

I think hubby and the other kids need to be a little more compassionate and to be more family oriented. They might just need you to show them how hard having Celiac can be.

I'd find a time when your gluten-free son isn't home and have a serious talk. I'd find the most tempting, smelly foods imaginable that your gluten eating family loves and put them in the middle of the table and not let them eat them. Then I would ask them to think about how it feels to not be able to eat them. I would really talk it up and try to get their digestive juices flowing. Then dump it down the garbage disposal - or better yet, find someone who can eat to eat it in front of them and tell them how amazing it is. Now tell them to think about how they feel right then, with the scent still in the air. And tell them to now imagine NEVER, EVER being able to eat that food again. EVER.

Tell them they can still eat whatever they want outside of the house, but the rule is you don't make the disease any harder on your gluten-free family member than it already is. Someone mentioned "fair." Fair doesn't belong in this discussion. It's about the other 3 learning to be more compassionate and showing their son/brother that they love him. He's going through a rough time right now. He'll probably grow out of it, but until he does everyone needs to help him succeed.

Oh, and I disagree with punishing him for cheating. It's only going to make him resent the disease even more. Help him to realize it's OK and give him lots of gluten-free options that he loves. Our household is almost entirely gluten-free. We do gluten-free parties and holidays all the time. No one minds - because the food is good. We have gluten-free pizza and movie nights (I'm sure some of you are tired of hearing me tell about these!). They are fun nights. And what's more, my son's friends LOVE the pizza! Be creative and make gluten-free yummy and doable for him.

Good luck!

Frances03 Enthusiast

I have a 10 year old that's gluten free, along with myself. We also have an 8 year old and a 13 year old, and my husband who are not gluten free, and another baby on the way. This post made me feel mad. I cannot believe that your husband and 2 other children are eating gluten foods in front of this child and you are surprised that he is "cheating". Even I would find it hard to sit and watch my husband eat something like glazed donuts in front of me. Furthermore, if my husband suggested bringing something in to this house that would make it hard for my little boy to resist, he would be getting MORE than an earful from me. Thank God that my husband is NOT that selfish and neither are my other two children. Our entire household went gluten free after my diagnosis because that is what my doctor insisted on. My husband and 2 other children were not given a choice. This is just the way it is, and they do NOT complain about it. In fact they LOVE all the new gluten free things that I prepare so much they don't really miss those things. Occasionally when we are traveling, we'll go to a restaurant with a gluten free menu and they will get whatever they want off the regular menu. And when we walk thru Costo, they all try whatever they want, while my 10 year old and I only sample the gluten free items. But I make sure that whenever they have a gluteny treat, we also have something gluten free so that he doesn't feel left out. It's not my job to judge or to tell you what to do. But if it were me, I would have ALL gluten out of the house immediately because an 8 year old should not be required to stare something in the face daily that he is not able to have. That would be like putting an open bar in the home of an alcoholic if you ask me. Of course even THAT would be an adult capable of making an adult decision.

ravenwoodglass Mentor

I think hubby and the other kids need to be a little more compassionate and to be more family oriented. They might just need you to show them how hard having Celiac can be.

I'd find a time when your gluten-free son isn't home and have a serious talk. I'd find the most tempting, smelly foods imaginable that your gluten eating family loves and put them in the middle of the table and not let them eat them. Then I would ask them to think about how it feels to not be able to eat them. I would really talk it up and try to get their digestive juices flowing. Then dump it down the garbage disposal - or better yet, find someone who can eat to eat it in front of them and tell them how amazing it is. Now tell them to think about how they feel right then, with the scent still in the air. And tell them to now imagine NEVER, EVER being able to eat that food again. EVER.

I think this is an excellent way to deal with this with the kids.

As to your husband you have my sympathy. He is selfish and childish. I also had a husband who put his wants and needs before the kids. Now that they are adults he is paying for it big time. I hope your husband can be made to realize what his actions are doing to your son now could have serious conseqences as far as their relationship goes when your son is grown.

i-geek Rookie

I agree with everything else posted, plus I'd like to add that if the husband can't imagine a kitchen without gluten, IMO he's not really a "foodie", or at least not a particularly creative one. My husband and I are major foodies, plus he brews his own beer. He looks at my celiac disease as a challenge to learn how to cook and brew amazing gluten-free stuff that anyone would want to eat or drink. We received a new charcoal grill as a gift and he taught himself how to use it as a smoker. I've been indulging my love of beans and grains by experimenting with heirloom beans and dishes like millet pilaf. I bought a tortilla press and started making my own corn tortillas. We're getting quite a reputation among family and friends as excellent cooks, plus his last batch of gluten-free beer was quite a hit. If anything, our diets were more limited before diagnosis, since they were so wheat-based. I'd never had quinoa before last winter.

cyberprof Enthusiast

Lilgreen, I don't want you to think I'm ganging up on you but really, your two younger kids are just the right age to impress upon them not to eat gluten in front of your gluten-free son. For example, my daughter was 17 when my son and I went gluten-free and it's really hard to get teenagers to change. But your littler kids are limited to what you buy and serve them inside the house. (Outside the house gets harder, especially as they get older.)

My idea would be to have your house gluten-free (except beer for hubby, if he wants). The two non-gluten-free kids can have pizza and cake at other kids birthday parties, or when they buy lunch at school or are at other kids' houses. Hubby can have gluten lunches and dinners out, and perhaps adult treats when the kids are asleep.

For gourmet, have your hubby look at www.glutenfreegirl.com where the gluten-free girl and her professional chef hubby create wonderful dishes. Gluten-free can be better than gluten cooking, unless you're talking about baking. Gluten-free baking can be done but probably won't win any taste tests versus gluteny cooking.

I hope that you are able to work this out for your family. Best of luck.

twohokies Newbie

I agree with everything that the other posters have said. First and foremost, you HAVE to get your husband on board. When my 3yo was dx'd a few weeks ago, I was ready to go gangbusters and make the whole house gluten-free. My husband was with me 98% of the way, but convinced me that he and my 7yo should still be able to have their bagels and sandwiches. I agreed so long that he cleans up his crumbs. And of course our beer can stay.

We are still new to celiac disease and I am pretty frugal, so we still have many non-gluten-free foods throughout the house until my other 2 kids finish them up. But any packages that were not open went to the food pantry or returned. We have had issues with my 5yo offering some of her snacks to my 3yo. We see the green runs in the toilet an hour later and know the likely culprit. So now, if my older 2 kids get a non-gluten-free snack, I have to watch them like a hawk.

I get the "no fair" complaint too about my 3yo's breakfast donuts. My response is that they don't want me to get into it and the kids drop it.

I also want to point out that my husband, who is our home's cook, is embracing a gluten-free diet since it's SO much healthier for us. We all get our gluten outside the house, so it's gluten-free at home for shared meals and no more processed foods or grabbing fast food.

Good luck to you!

mommida Enthusiast

I'm going to try and suggest a whole family solution. Hopefully some bonding while the kids learn lifeskills.

You said your son is 8. Assuming you don't want him living in your basement when he is 40, he might go off to college or just move out someday. Depending on his birthday, you only have about 10 years to teach him how to cook and bake gluten free.

Foodie dad needs to take an active interest in the gluten free recipes out there and teach his son what he knows in the kitchen. The rest of the family will "follow their nose" and taste test everything.

Put together a recipe organizer for his favorite recipes. (Let me tell you it is really nice to have your son make a meal or two around the house. The mess is worth it, clean it together ~God knows some boys just can't see dirt.)

Just another suggestion to add to the keep favorite gluten free favorites around all the time.

weluvgators Explorer

Gluten-free can be better than gluten cooking, unless you're talking about baking. Gluten-free baking can be done but probably won't win any taste tests versus gluteny cooking.

I just have to share that I ate the most amazing muffin yesterday. It was an apple muffin cake of sorts. It was so amazing that I had to go ask the chef what the ingredients were since every part of me was convinced that this was an apple fritter/donut mix. But it was better than any apple fritter than I had ever had before, as I felt fabulous after eating it. The whole batch of them were gone in minutes with demands for more. So, I wholeheartedly feel that gluten free baking WILL win taste tests against gluten cooking many, many, many times. It does take a bit of practice and patience, but so did learning to cook with gluten for the first time.

As for the sneaking problem, we maintain a gluten free house. Four out of five family members are now full time gluten free after figuring out through elimination/addition diet challenges that we are all much better off without gluten.

Good luck, as I understand how complicated this seemingly *simple* gluten free lifestyle is!

JeepWidow Newbie

The outside world is hard enough, especially on school age children that are differnt. I think home should be a safe haven where everyone feels safe, loved and respected. It sounds like your family really needs to come together and decide together (even if you have to steer the initial conversations) what kind of home makes everyone feel good, talk about Gluten issues and other hot topics so that everyone can relate. Maybe you should let your family take charge of meals a bit more (to the extent they can depending on their age), so they could have a sense of pride for making something healthy for everyone. On your sons night and it would allow your son to have some sense of accomplishment for chosing the right kind of foods. Control is often something that leads people to many kinds of eating disorders, and IMO a celiac eating gluten isn't different from an obsese person eating unhealthy foods as it's self distructive. You need to build positive feelings about doing the right thing. Also encourage your child to be more involved in his own health, let him talk with his doctors (maybe even without you there) it will foster a sense of personal responsiblity and pride in feeling grown up.

lilgreen Apprentice

The outside world is hard enough, especially on school age children that are differnt. I think home should be a safe haven where everyone feels safe, loved and respected. It sounds like your family really needs to come together and decide together (even if you have to steer the initial conversations) what kind of home makes everyone feel good, talk about Gluten issues and other hot topics so that everyone can relate. Maybe you should let your family take charge of meals a bit more (to the extent they can depending on their age), so they could have a sense of pride for making something healthy for everyone. On your sons night and it would allow your son to have some sense of accomplishment for chosing the right kind of foods. Control is often something that leads people to many kinds of eating disorders, and IMO a celiac eating gluten isn't different from an obsese person eating unhealthy foods as it's self distructive. You need to build positive feelings about doing the right thing. Also encourage your child to be more involved in his own health, let him talk with his doctors (maybe even without you there) it will foster a sense of personal responsiblity and pride in feeling grown up.

This is for everyone who took the time to post, and this above post is a great way to end. Thank you all so much for your replies. I have removed almost all gluten foods in the house - there are none that entice my son. No crackers, no snacks of any kind. Dh agrees that this is a good move. He goes along with my strictness, but tells me calm down when I point out possible moments of cross-contamination (ie. baking gluten and gluten-free pizza buns on the same cookie sheet). He hasn't yet accepted the seriousness of it, but I'm working on it. We've been gluten-free for 3 years now and he has been great at making gluten-free food when he does cook, so that's good. There's still room to go. As for my son, I love the idea of putting him in charge of dinner one night! There are so many other excellent suggestions that were made in this thread to try to make this work better in our house and I'm going to mull them all over and make a plan. Thank you! Thank you!

ProudMommyDebbie Rookie

(((lilgreen)))

Above hugs for you.

I am new to this celiac and gluten free world, but just want to share my experience.

My husband was born with spina bifida and hydrocephalus and had no major problems growing up, but in 2005 became very ill and had to have brain surgery to fix his shunt that had broken, which meant the fluid building up around his brain (hydrocephalus)was not being drained down from his head into his abdomin because the shunt had malfunctioned, and was causing major issues.

After the shunt revision and abdominal surgery he came home to recover Hurricane Ike hit Texas, and we had to evacuate due to his condition.

We came home three weeks later and our rental home had flooded, so we lost our home and only vehicle.

Moved into another rental home and took on a car note.

My husband broke out with severe psoriasis from the stress and recovery.

He later was diagnosed with Rheumatoid Arthritis and Lupus.

He's been unable to work since 2005, so I am a Spousal Caregiver, and mother to three kids.

He is believed to have Celiac, but waiting confirmation, and we were told to have our kids tested.

They were tested the end of July and we received the results yesterday.

All three of my kids have celiac.

My son is 8, so the same age as yours, and I have two daughters ages 6 and almost 4.

I don't know how i will make this change, but it has to be done, and quickly.

My son has allergies, so takes Allegra, he has chronic bronchitis or lunch infections when the weather changes every year between Jan-April, and all this bring on allergy induced asthma.

He has an inhaler at home and at school, and he has a breathing machine at home along with the mouth piece and medicine at the school for the schools breathing machine.

His school is trying to label him with having Attention Deficit Disorder, after testing his IQ, Academic Achievement, and also re evaluating his speech.

HE tested in normal range for IQ and no learning disabilities on the academic testing, and he now tests too high for an IEP in speech.

Due to the below grade level test scores at the end of 2nd grade, where they said he was below in reading and writing, and the history of the teachers having to redirect him to pay attention and do his work, they now want to not look into any other avenues and just say it's ADD.

I know celiac can cause these issues, so I hope this will help my son succeed in school.

He is smart and loves to read, loves math and science, he just gets easily frustrated and thinks he can't do things that are hard.

My 6 yr old daughter has eczema that breaks out on the crease of her arms where you bend at the elbow, then it breaks out at the back of her knees, she has premature acne breakouts on her chin, but it's not noticeable unless you are really close to her.

My youngest daughter , as the other two are lactose intolerant, but not yet shown signs of auto immune problems or other health issues.

The best thing I can do now that all three of my kids have it, is have them all eat the same thing at the same time.

I do not have it, but my husband might, but he can't change his diet till it is confirmed, so we will have any foods with gluten out of notice to the kids.

I know it's harder for you with your oldest having celiac, but the two younger not having it, and there always is the, "it's not fair he/she gets to eat that and i don't."

Just keep reiterating to your oldest that these foods will make him sick, it starts at home, and he will be surrounded by the gluten foods at school, so a good base at home will help him cope in the outside world.

I contacted my children's school nurse, and she is contacting the districts dietitian.

So I seem to have help in the works with the school, and now i will focus on the home.

Best of luck to you.

mommyto3 Contributor

I don't have any advice as it's so hard to stop kids from sneaking it when they have minimal symptoms. My son is the same. He's 7 and all of his symptoms are behavioural (so he doesn't even realize). That makes it so hard. If given the chance, he will totally eat gluten. For instance he's at a birthday party right now and I know he'll eat the cake if the mom in charge there gives it to him (which we asked her not to). It would be so much easier if he got bad gut symptoms....at least that would deter him. Not that I'm wishing discomfort on him but how do you tell a kid not to eat something that he can't feel is hurting him?

Just wanted to let you know that we're in the same boat!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

    2. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    3. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    4. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,259
    • Most Online (within 30 mins)
      7,748

    Lindia
    Newest Member
    Lindia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.