I am a terrible Celiac.

[LarlaB]

I was reading the thread for Jean RE questions to ask Celiac specialist. And it turns out I am a terrible Celiac. I am such a failure I shouldn't even call myself gluten free. I'm only half kidding.

 

I mean I obviously take it very seriously and try. And I try hard. I am very detailed when eating out or in others homes. But we have members of the family who eat gluten so we have bread products store on the counter. And I make regular flour baked goods (am not above wearing a mask, as I'm actually allergic to wheat as week as Celiac) and and prepared non GF toast for kids.

 

I didn't throw out cutting boards or strainers. Or mixing bowls. Or mixers. Or pans. I did get a new toaster but it's not designated GF anymore 😳

 

Do I really have to have a separate toaster? New appliances? I mean I clean them. Yes trace (microscopic amounts) might remain but I'm not ready to take the whole family gluten free for this reason and while I have a decent sized kitchen I sure don't have space for two sets off appliances.

 

So am I kidding myself thinking that it's good enough? I was diagnosed almost 4 years ago and am a silent Celiac who will now react to eating gluten whereas I didn't before. But thought I was ok with cross contamination. I clean a lot. Maybe I've been too lazy. That's likely. Maybe my random minor health issues are because I'm being contaminated in my own kitchen.

[momacacia]

I don't have a solution, but I do have sympathy. It's so hard...health issues alone are, truly avoiding a particular food and still eating. I hope you find an easy path that works for your body.

[Butter]

Do you get sick?

 

That's what really matters.

 

A tiny bit of gluten means I'll be on the toilet for a couple days, in bed for several days, and in pain with swollen joints for weeks.  So it's worth it to me to make sure cross contamination doesn't happen and to have a gluten free household.  I get really sick.  If you don't, it probably means you can handle a higher level of gluten before getting sick than I can.  There isn't one set amount for every celiac.

 

(ETA: Three of the six of us are diagnosed with Celiac and one of the other three is mildly allergic to wheat, so since 2/3 of the household - and when my parents move here in December it will be 5/8 since my dad has Celiac, too - have to be gluten free it makes sense for the house to be.)

Edited August 2, 2017 by Butter

[Junie]

I am the only one gf in my family.  Going completely gf would be crazy expensive, so we do have quite a bit of gluten in our house.

 

The Kitchenaid was my MIL's, so we have no plans to replace it.  I once contained gluten, but was thoroughly cleaned and I *think* it is only used for gf mixing.

 

We got rid of the toaster.  The waffle iron is for gf waffles only.

 

Pots and pans are used for both.  I just make sure that they have been thoroughly cleaned.  Same for the drainers and utensils.

 

We keep all of the bread products on a different counter from where I do the majority of the cooking.

 

 

All of that to say, I think you would be smart to make some changes, but I don't think you need to change everything.  Truthfully, I would stop all gluteny baking in the house.  I'm allergic to wheat and I can get sick just from breathing in the smell of baking bread.  I would also replace the toaster, as that is really impossible to clean well.

 

 

[Shellydon]

Everyone I know that has Celiac cannot have gluten in their house at all.  They all tried, but it ended up being too difficult and they were getting sick.

[Random]

I think you should just be thankful that you don't have to go to extreme measures to be healthy!

 

Sometimes, a person is extremely sensitive, which is challenging to manage.

 

Sometimes, a person has Celiac, but isn't hyper-sensitive. 

 

I couldn't imagine sharing Celiac & NonCeliac toasters.  I think that is truly miraculous. :001_smile:

 

On the other hand, if you are still sick but thinking you don't have to be extreme, you might be trying to fool yourself.

[Nemom]

I would worry that even though you are not symptomatic you may be damaging your intestines and body with the cross contamination.  

 

We are very sensitive at my house and had to replace everything.  

[MBM]

My youngest will be getting the initial test for Celiac disease soon.

 

Is it possible to tell if the intestines are getting better after going gluten free for awhile? For example, would inflammation markers or some other markers give some sort of clue? Or, do people just begin to feel better? Don't mean to side track but I've been wondering.

[Jean in Newcastle]

My youngest will be getting the initial test for Celiac disease soon.

 

Is it possible to tell if the intestines are getting better after going gluten free for awhile? For example, would inflammation markers or some other markers give some sort of clue? Or, do people just begin to feel better? Don't mean to side track but I've been wondering.

Yes. If you had a biopsy/ endoscopy after being gluten free for awhile it would show.

 

You can have damage to your intestines even if you don't have g-I symptoms according to the specialist we saw today.

[LarlaB]

I would worry that even though you are not symptomatic you may be damaging your intestines and body with the cross contamination.  

 

We are very sensitive at my house and had to replace everything.  

 

 

Yes, that's my concern!  Since I'm silent Celiac and don't even show symptoms unless its a serious amount, I think it creates a false sense of security.  

 

Truthfully while GI distress is unpleasant, I'm way more concerned about the intestinal damage and subsequent malabsorption. 

[LarlaB]

Yes. If you had a biopsy/ endoscopy after being gluten free for awhile it would show.

 

You can have damage to your intestines even if you don't have g-I symptoms according to the specialist we saw today.

 

 

Yes.  That's what my immunologist advised as well- that silent is particularly worrisome because there aren't warning signs- yet the damage is still there.  I've read more than a few case studies of that silent Celiacs have substantial damage to intestines without GI symptoms. 

[LarlaB]

I am the only one gf in my family.  Going completely gf would be crazy expensive, so we do have quite a bit of gluten in our house.

 

The Kitchenaid was my MIL's, so we have no plans to replace it.  I once contained gluten, but was thoroughly cleaned and I *think* it is only used for gf mixing.

 

We got rid of the toaster.  The waffle iron is for gf waffles only.

 

Pots and pans are used for both.  I just make sure that they have been thoroughly cleaned.  Same for the drainers and utensils.

 

We keep all of the bread products on a different counter from where I do the majority of the cooking.

 

 

All of that to say, I think you would be smart to make some changes, but I don't think you need to change everything.  Truthfully, I would stop all gluteny baking in the house.  I'm allergic to wheat and I can get sick just from breathing in the smell of baking bread.  I would also replace the toaster, as that is really impossible to clean well.

 

Thanks - that is helpful.  I think you are right that I need to make some changes.  I rarely cook with regular flour- only use mixes- but I do still have some in the house, but not near my GF stash. I don't eat waffles, and have toast about 4x a month as I'm pretty low carb, which is why the extra hassles bothers me even more. 

 

And you are the only other Celiac/Wheat Allergy I've ever met!  The Dr who diagnosed me was excited because its so rare- can't say I felt the same.  I have respiratory wheat allergy symptoms as well (worked in a bakery for 4 hours and quickly realized I had a major issue- which took me to immunologist, and he without my knowledge or request tested me for Celiac as well as other grain allergies. I literally had no reason to even consider or suspect I had Celiac).

[LarlaB]

Do you get sick?

 

That's what really matters.

 

A tiny bit of gluten means I'll be on the toilet for a couple days, in bed for several days, and in pain with swollen joints for weeks.  So it's worth it to me to make sure cross contamination doesn't happen and to have a gluten free household.  I get really sick.  If you don't, it probably means you can handle a higher level of gluten before getting sick than I can.  There isn't one set amount for every celiac.

 

(ETA: Three of the six of us are diagnosed with Celiac and one of the other three is mildly allergic to wheat, so since 2/3 of the household - and when my parents move here in December it will be 5/8 since my dad has Celiac, too - have to be gluten free it makes sense for the house to be.)

 

I'm really thankful I don't get sick- that's part of why it was so shocking to be diagnosed.  I had no symptoms or reason to suspect it at all!  But that's also my concern- since I don't react to particles, I don't have a warning system or any way of knowing if I'm being glutened.  Thankfully now,  if I have a large amount (like a bite of something that has gluten in it will make me sick for days- which was actually a relief the first time it happened).  

 

So cross contamination is a silent Celiac nightmare (up to 40% Celiacs are estimated to be silent- as in no symptoms....although once they are GF for a period of time, many- like me- do start to develop symptoms after having gluten).

 

And I hope this comes across in the right way- while GI distress and being sick for a week after having gluten is really terrible, I am really concerned about the unseen intestinal damage and immune issues happening behind the scenes. 

[Daria]

I'm really thankful I don't get sick- that's part of why it was so shocking to be diagnosed.  I had no symptoms or reason to suspect it at all!  But that's also my concern- since I don't react to particles, I don't have a warning system or any way of knowing if I'm being glutened.  Thankfully now,  if I have a large amount (like a bite of something that has gluten in it will make me sick for days- which was actually a relief the first time it happened).  

 

So cross contamination is a silent Celiac nightmare (up to 40% Celiacs are estimated to be silent- as in no symptoms....although once they are GF for a period of time, many- like me- do start to develop symptoms after having gluten).

 

And I hope this comes across in the right way- while GI distress and being sick for a week after having gluten is really terrible, I am really concerned about the unseen intestinal damage and immune issues happening behind the scenes. 

 

I'm curious why you got tested if you have no symptoms.  How did that come about? 

Edited August 2, 2017 by Daria

[LarlaB]

I think you should just be thankful that you don't have to go to extreme measures to be healthy!

 

Sometimes, a person is extremely sensitive, which is challenging to manage.

 

Sometimes, a person has Celiac, but isn't hyper-sensitive. 

 

I couldn't imagine sharing Celiac & NonCeliac toasters.  I think that is truly miraculous. :001_smile:

 

On the other hand, if you are still sick but thinking you don't have to be extreme, you might be trying to fool yourself.

 

 

I understand.  I'm repeating myself a lot on this thread- LOL- but there are many silent Celiac people out there who do not get sick from gluten. My dr pointed me towards a study of a mother and daughter who both had positive Celiac blood tests.  The 16 year old girl would be vomittng and writhing in pain after having gluten.  She was biopsied and found to have atrophied villi.  Her mother had absolutely no symptoms at all, and was also biopsied and had virtually no villi in the intestine.  The damage was severe, yet she was never ever sick.  

 

So while its hard to understand because it seems to be the exception, it is definitely true.   It reasons that most silent Celiacs won't be diagnosed because they don't feel immediately ill after ingesting wheat.  Granted they have a host of other symptoms.  Medicine is catching up a bit.

 

So my point-  the absence of symptoms & reactions -while a blessed gift- lends itself to a false sense of security for Celiac sufferers. And I'm having a reminder & reckoning I suppose. 

[Junie]

Thanks - that is helpful.  I think you are right that I need to make some changes.  I rarely cook with regular flour- only use mixes- but I do still have some in the house, but not near my GF stash. I don't eat waffles, and have toast about 4x a month as I'm pretty low carb, which is why the extra hassles bothers me even more. 

 

And you are the only other Celiac/Wheat Allergy I've ever met!  The Dr who diagnosed me was excited because its so rare- can't say I felt the same.  I have respiratory wheat allergy symptoms as well (worked in a bakery for 4 hours and quickly realized I had a major issue- which took me to immunologist, and he without my knowledge or request tested me for Celiac as well as other grain allergies. I literally had no reason to even consider or suspect I had Celiac).

 

I actually don't know for sure that I have Celiac.  I was tested for food allergies and I found out that I'm allergic to wheat, oats, and barley (and probably rye, though they didn't test for it).  I went gluten free the next day, not knowing that I should be tested for Celiac first.  Because of symptoms that I have I suspect that I have Celiac, but I don't know for sure.

[bettyandbob]

We made our house gf 15 years ago. We did not get rid of everything. KitchenAid and Cuisinart were thoroughly cleaned. Pots, pans, dishes utensils all cleaned. If you season pans wash and reseason. We did replace toaster.

 

The people in my house that have to get annual testing have never tested positive for having gluten in their system. I take this to mean, everything I kept was cleaned well enough, in addition to we aren't inadvertently getting gluten ingredients.

 

Yes, there are things you can't clean , toasters and waffle iron come to mind. But it's unnecessary to give away a kitchaide.

[dsmith]

I wonder about the effects of cross-contamination. I'm gluten-free for other auto-immune conditions, but I suspect dh may have Celiac and I'm pushing him to get tested. I can't imagine my in-laws refraining from bringing gluten in the house. I know my son would benefit greatly from going gluten-free but he would be very resistant, to put it mildly. Honestly, I can't imagine dh giving up gluten even if he tested positive... I wonder how much cross-contamination I'm being subjected to and how it is affecting me. I'm trying very hard to reduce inflammation in my body, and gluten is the worst offender for me. I had one major gluten exposure since going gf and my current MS flare got a lot worse within 12 hours and took 2 weeks to subside to the previous level. Everyone in the house eats gluten except me and I prepare a lot of the food, make sandwiches, use the same cookware, etc.

 

I want dh to get tested because he has diarrhea almost every day. He is not losing weight, though. He eats a LOT of baked goods and other crap. He also has a strange rash on his shins, a different rash on his chest and back, has lost his hair once and started losing it again but not as badly as the first time. He's never gone to the doctor about this and it's been going on a few years now.

[Jean in Newcastle]

http://newsnetwork.mayoclinic.org/discussion/left-untreated-celiac-disease-can-result-in-serious-complications/

[Nemom]

I understand.  I'm repeating myself a lot on this thread- LOL- but there are many silent Celiac people out there who do not get sick from gluten. My dr pointed me towards a study of a mother and daughter who both had positive Celiac blood tests.  The 16 year old girl would be vomittng and writhing in pain after having gluten.  She was biopsied and found to have atrophied villi.  Her mother had absolutely no symptoms at all, and was also biopsied and had virtually no villi in the intestine.  The damage was severe, yet she was never ever sick.  

 

So while its hard to understand because it seems to be the exception, it is definitely true.   It reasons that most silent Celiacs won't be diagnosed because they don't feel immediately ill after ingesting wheat.  Granted they have a host of other symptoms.  Medicine is catching up a bit.

 

So my point-  the absence of symptoms & reactions -while a blessed gift- lends itself to a false sense of security for Celiac sufferers. And I'm having a reminder & reckoning I suppose. 

 

So I'm curious...What led your Dr to test you for celiac in the first place if you were not symptomatic?  Were you diagnosed through endoscopy or blood tests? 

 

It took us years and a lot of pushing before we able to even get a DR to take us seriously and do the necessary testing.  

[tori@thehomefront]

I'm following along...we was told when my son very young that he had celiac (had no symptoms, was scoped for a different reason and found damaged vili) - but then a different dr told us later that if he didn't have any symptoms, he couldn't be celiac.  We've not done GF since seeing the second dr.  :(  I've never heard of silent celiac before this thread.  Thanks to all sharing info!

 

My question would be, if he gets the blood test done again, now, would that show whether or not he has silent celiac?  Or would he have to be scoped?

[Jean in Newcastle]

I'm following along...we was told when my son very young that he had celiac (had no symptoms, was scoped for a different reason and found damaged vili) - but then a different dr told us later that if he didn't have any symptoms, he couldn't be celiac.  We've not done GF since seeing the second dr.  :(  I've never heard of silent celiac before this thread.  Thanks to all sharing info!

 

My question would be, if he gets the blood test done again, now, would that show whether or not he has silent celiac?  Or would he have to be scoped?

 

A ttg blood test should show if he has celiac disease if he has been eating gluten.  My understanding is that the endoscopy is what is the definitive test for celiac disease but not all doctors require it after the ttg blood test. 

[AnniePoo]

OP, I could've written nearly your entire post . The only difference is that I was diagnosed six years ago, and I would never use a non-gluten free toaster. I definitely live on the edge though. I've eaten so called gluten-free Thai food from hole in the wall restaurants, and take small risks from time to time. I've never eaten obvious sources and gluten though. I thought certainly that I'd have crazy high antibody levels, but when I had them tested a few months ago, my TTG was only a 9. Down from 120 at diagnosis.

[LarlaB]

So I'm curious...What led your Dr to test you for celiac in the first place if you were not symptomatic? Were you diagnosed through endoscopy or blood tests?

 

It took us years and a lot of pushing before we able to even get a DR to take us seriously and do the necessary testing.

Good question. Blood test ordered by dr- his initiative and he didn't even tell me he ordered the test.

 

I worked at a bakery for 4 hours and had such significant respiratory reactions that I suspected a wheat allergy. I went to an allergist/immunologist for a skin scratch test and was found to be moderately allergic to wheat.

 

Dr ordered a blood test to identify what grains I could eat (oats, rye, barley) and also added on a Celiac screening but didn't tell me. I don't know what prompted him to tack on that additional test. I opted to forgo endoscopy/biopsy as he said it wasn't necessary.

[LarlaB]

OP, I could've written nearly your entire post . The only difference is that I was diagnosed six years ago, and I would never use a non-gluten free toaster. I definitely live on the edge though. I've eaten so called gluten-free Thai food from hole in the wall restaurants, and take small risks from time to time. I've never eaten obvious sources and gluten though. I thought certainly that I'd have crazy high antibody levels, but when I had them tested a few months ago, my TTG was only a 9. Down from 120 at diagnosis.

Yes that does sound like me- it's comforting. I'm 4 years into this but have strong residual denial issues. Working on it 😜

 

I've never had follow up TTG testing but might do that in a few months. I know I was glutened 3 months ago at a Mexican restaurant where I took a risk and shouldn't have. I got so sick my entire family is mildly traumatized and will never eat there again.

 

I will get a new toaster. Seems to be an obvious decision for everyone else- so while I rarely eat toast, I will just do it.

[1GirlTwinBoys]

My DH is celiac and we can NOT share a toaster.  I have to bake all of his bread in the oven.  Since I do all the cooking I think it's easier for the whole house to not be GF.  If he had to handle all the regular food like I do, we'd have a problem for sure.

[AnniePoo]

I don't know how to quote from my phone

 

My reactions aren't too terrible, which is a blessing or a curse. I take way more risks than I should. Living on the edge is not healthy. It just gets so old being the gf person. I hate that eating out as a family and going on vacations is 10 times harder because of me.😩

 

Sadly I seem to react more as time goes on. I really hope they find a cure in the next 14 years. When I was diagnosed, I told myself not to freak out because surely there will be a cure in 20 years (this was 6 years ago) and I can enjoy my 50s without food restrictions. It's not looking good though!