Thinking Of Intentionally Glutening Myself.

[GFAnnie]

I have been gluten free since January, as have my one and three year old. I have DH, and never had any obvious digestive symptoms.  My one and three year old are not really able to communicate their symptoms well (three year old has whatever aches and pains mommy or daddy are having, or whenever he needs attention).  Also, I don't believe my three year old was having many obvious symptoms either.

So, here's the thing.  I have no history of digestive symptoms pre-diagnosis.  Every food we eat is NOT certified gluten free, but most is.  We are quite careful, but there are those few items that we're just kind of trusting "should be gluten free."  Not to mention, yesterday was the first time I ate something from a local bakery that offered gluten free items.  They said they "wipe down all surfaces and try to be careful but they can't make any guarantees."  It was a bit of a crap shoot but isn't any restaurant, etc?

So I keep hearing that the longer you are gluten free the more severe your symptoms become when getting glutened.  I WANT to have symptoms, and I want to KNOW what those symptoms are.  That way I can be a sort of barometer for my kids and myself.  I hate thinking that possibly something we eat regularly, like dried cranberries or yogurt, could have some hidden gluten and we're eating it all the time and don't have a clue, because we're symptomless.  Or to know that the local bakery gluten free items, or ice cream stand are truly safe for us or not because I do or do not get glutening symptoms when eating them.

So is it crazy to go ahead and purposefully gluten myself, to test it out?  And do you think being gluten free for five months is long enough that if I were to gluten myself, I would likely have symptoms by now?

 

 

[captaincrab55]

WoW....       You have DH and want to eat gluten.    How were you diagnosed with DH?       It could take quite a while for that gluten to exit your body and stop causing a DH reaction.    I would rethink that approach.

[GF Lover]

Same question.  Are you diagnosed with DH and kids diagnosed with DH/Celiac?  Also, your kids may have different reactions to yours so you would not be a good judge to how they are feeling.

 

If you are all diagnosed properly then I would never even consider a "test".  I think that will be the prevailing opinion found here.  Would you stab yourself to "make sure" you still bleed?  Just saying.

 

Colleen

[GFAnnie]

I'll try to make my diagnois story as short as possible.  My baby was labeled "failure to thrive" due to weight gain issues.  I had read that celiacs can cause this, and my niece (sisters child) has celiacs and I knew it was genetic, so stopped giving him gluten and his weight shot up very quickly, and his eczema improved.  I told his doctor this, but because he hadn't been consuming gluten he couldn't be tested.  His doctor, being very proactive and believing strongly in things like celiacs being a bigger more widespread problem then we realize, said "would you like me to test you?" I said sure, but assumed I didn't have it since I didn't have any stomach problems. Surprise, it came out positive.  Then she said we should test my three year old too, since he's been eating gluten along with me, and he probably wouldn't get much once I went gluten free - surprise, his tests came out even "stronger" than mine.  So she said because I have it, and my three year old has it, because my one year old clearly was having weight gain issues when consuming gluten, it's good enough to assume he has it too.

I really didn't go any further than that with testing, just went gluten free.  Then I stumbled across articles about DH and the lightbulb went off.  I had been getting these itchy blisters and rashes for years and no doctor could figure it out, didn't resemble any of the typical dermatitis', and also read how people with DH often don't have digestive symptoms.  So that really did it for me.  I just don't see any reason to test further.  The pictures, descriptions, symptoms, and progression of the rash fits me to a tee. 

My three year old once in a while said "my tummy hurts" but never appeared sick or had bathroom issues, and ate gluten all the time. It's pretty normal for little ones to say stuff like that, especially if they see someone else complaining of it, so you never know if they're telling the truth - you just have to watch their behavior to see if it adds up. 

So now we're a family of celiacs with no way to really know if we're sucessfully remaining gluten free or not.  And it's annoying. Yesterday I ate something from a local deli that was claimed to be gluten free, I had no symptoms.  So do I conclude that it's safe to bring my kids there for a treat every once in a while?  Or did I get glutened but just don't know it so every time we eat there we get glutened, unwittingly?  A few weeks ago we went out for ice cream, and I didn't get any aches or pains, but the next day when I went to the bathroom things weren't totally "perfect" but not like explosive diaharea or anything.  So did I get glutened?  Or was it fine and it's safe to bring my family there?

So as far as stabbing myself to make sure I still bleed - no, I wouldn't.  But if stabbing myself somehow helped me to assure that I could keep my kids healthy, hand me the knife, or in this case, the baguette.

[RMJ]

I understand your desire to test yourself with a bite of gluten. I was diagnosed because of chronic migraines, and I'm not sure if I have digestive symptoms or not. I sometimes have nausea, but don't know if it is because of eating something that was contaminated with gluten or not. It would be nice to know, because then when nauseated I would search for the offender and know to avoid it. One small bite of bread now could help me reduce gluten ingestion in the future. But I haven't done the one-bite test. I plan to talk to my GI about it next time I see her.

[GFAnnie]

RMJ - thank you for responding.  If you think of it, could you please come back here and post after you talk to your doctor?  I would be curious to see what she advises.  I hate being in this "haze" about glutening.  I find it makes me more restrictive than those with clear symptoms because I have no idea what the story is.  I don't want to ever eat in restaurants or let my kid eat anywhere but here at home because we just don't know.  I would love the peace of mind of knowing that if we were getting glutened, I would know it, and be able to look into the offending food or dining establishment.

[GFAnnie]

I guess another option is a follow-up blood test?  Just to see if we're on target?  How long does someone need to be gluten free for their tests to come out clear, typically?

(Of course I'm still battling with my insurance company to pay for the tests for myself and my son back in January!)

[kareng]

Here is the info about follow- up testing.

Open Original Shared Link

If you want to eat some gluten - ONCE- and see what happens, why not? Just don't think its OK to eat gluten if you feel fine. It will still damage you.

[GFAnnie]

Here is the info about follow- up testing.

Open Original Shared Link

If you want to eat some gluten - ONCE- and see what happens, why not? Just don't think its OK to eat gluten if you feel fine. It will still damage you.

Thank you so much for that link!  I had no idea about that recommendation and that would probably help me a lot with this feeling of cluelessness.  I will talk to my doctor soon - my baby has an appointment coming up anyway. And yeah, I might attempt a bit of gluten too, just to see what happens. But of course, symptoms or not, it would just be the one test.

[LauraTX]

As someone who is pretty much asymptomatic, About 9 months after I was diagnosed, I had had one or two times where I had questionable GI symptoms, but couldn't necessarily contribute them to gluten.  I spoke with my GI doctor and immunologist about my anxiety over my inability to be by own gluten detection system, like many celiacs are.  So, my GI doctor told me I could go eat a gluten meal, just once, to try and gauge my reaction.  I thought about it for a long time, and I finally did.  Nothing acute happened.  Of course, I had terrible anxiety and the feeling that I was being very naughty, LOL.  At my next GI appointment I let her know the results of the experiment, and she told me that people's reactions vary, it isn't completely abnormal to have no outward symptoms, and that reactions can change over time, but not always.  She went on to say that, if in a few years I feel like I may be reacting to gluten, that could be repeated, but it is unlikely to change at this point.

 

As Karen said, eating gluten once to see what happens when you are trying to get a good understanding of your body and how it reacts is okay.  Obviously, don't use the lack of reactive symptoms to justify not being gluten-free anymore.  Do it at a convenient time where, if you end up trapped in the bathroom or sick, you will be okay.  And remember your kids may have different exposure reactions than you.  But of course, being kids, they will be likely to eventually verifiably get into something with gluten and you will know then.

 

I totally understand your anxiety of not knowing if something is truly gluten-free.  We can't buy only certified gluten-free products, and since the at home testing kits are pretty pricey, that probably isn't a reasonable option for frequent use.  However, if there is something you eat all the time, it may be worth it to buy a testing kit if the cost difference between products makes up for it.  But remember gluten content can vary in uncontrolled environments so it is also necessary to ask the manufacturer about their practices on a regular basis.

[GFinDC]

Hi,

 

Do you have a celiac support group in your area?  If you do you could check with them for suggestions on "known" safe places to eat.  You can also find celiacs experiences for many products right on this forum.  There is a search  option on the top right of the forum page.  Many times you can find information on manufacturers websites also.

[NatureChick]

I think I understand what you're trying to say. It isn't that you want to consume gluten in order to see if it is dangerous to you - you know you have celiac. You want to do an experiment in order to see if you can learn what small symptoms might occur so that you can tell if you've accidentally been glutened in the future.

I have a feeling that you may never know. My reactions to even trace amounts of gluten soon after going gluten-free were totally different than they are now. And the one time I accidentally consumed a full dose of gluten, it took days for some of my old symptoms to arise, but I had completely new ones as well. 

My reaction to trace amounts now that I've figured out how to be gluten free consistently are negligible and might only mean that I'm really tired the next day.

I'd say skip the purposeful test of full-on glutening because it is sure to happen accidentally as some point anyway. In the meantime, keeping a food diary that not only logs food, but also how you feel, and in the case of your young children, their moods, could help you figure things out, even if you only log items for a few days after you knowingly take a risk. But I'd forego the shared bakery in the future. Too high a risk.

[nvsmom]

I don't react to gluten more severely now than when I was undiagnosed. Not at all.  I suppose I might notice it a bit more because I am not used to feeling sick all the time now a days, but it is definitely not more severe.

 

If you do eat gluten and you have not obvious reaction, then you have your answer - you'll have to go back to being extra strict and careful with your diet because you do not get obvious symptoms... with added pressure since your kids are relying on you too. Not fair, butthat might be the way it is.  

 

Best wishes to you and good luck with retesting.

[bartfull]

Please go to the DH section and read up on it. Many people with DH have no digestive symptoms because the antibodies are attacking the skin instead of the gut. The thing is, if you eat gluten you may wind up with a bad flare of DH that could last for a couple of YEARS. I think it would be better to just keep being extremely careful about CC, and keep getting tested (and your kids too) as recommended. If antibody levels aren't dropping or if they go up, then you'll know there is a problem.

[GFAnnie]

Thank you so much everyone for taking the time to respond.  There are a lot of good points here that keep throwing my decision back and forth!  But it's really nice to see I'm not  alone in this situation of not really knowing.  My youngest has an appointment on Monday and I plan on bringing this all up with her, and talking about retesting, which is maybe the best way to go for now. 

Thanks again!

[SoLacey]

I have DH and have never really had noteworthy digestive symptoms.  Since the diagnosis I've developed a lactose intolerance and IBS, that changes things but gluten doesn't seem to bother my stomach.  I can only think of a couple of occasions where I've had bloating and stomach pains after eating it. 

 

My symptoms have always been more neurological and inflammatory.  I never connected them to food, things like horrible sinus infections that would last for a month at a time, reoccurring strep throat, allergic rhinitis, running into things, falling down, vision problems, neck pain, carpal tunnel, thoracic outlet syndrome, ADHD, reoccurring pink eye that ended up being an allergic reaction, exhaustion and so on.  The list is pretty long but that's a start.  I've had pretty severe neck pain over the years that made sleeping difficult but it wasn't until well after the diagnosis that I realized that was happening after I'd been glutened.  If you're not very symptomatic to begin with you could get simple joint pain or watery eyes or what seems like a cold.  You might want to be alert to other types of aches and pains, your symptoms might not be digestive.  Just a thought....