Gluten Challenge? Or Just Stay Off?

[capmish]

Hi,

 

Im sure there are a million other posts just like this one, I am just feeling very lost and alone right now and not sure what to do.

 

I just got my blood test results for Celiac, and it came back negative.  I had a feeling I would get this result, as I have only eaten wheat a few times in the last month. When I took the test, I was having a very bad reaction to some pasta that I ate, so the doctor said that since I was reacting, it should show up.  Not sure if that is correct or not.

 

So my issue is that I have been dealing with many symptoms for a long time.  After going off of gluten, some of my symptoms started going away, and then when I tried (3 separate times) to eat wheat, I got extremely ill for a couple days.  So I can not even begin to imagine having to add gluten back into my diet to get tested.  How does that work?  How do people survive?  I don't want to go back to all those issues, I just want to get better!

 

Another question is non celiac gluten sensitivity symptoms exactly the same?   

 

No one in my family has been diagnosed with celiacs.  BUT my grandmother had rheumatoid arthritis and osteoporosis  and died at age 55.  

 

Here are some of my symptoms, some are newer symptoms and some have been for years and years:

I get extremely itchy skin & hives (I have been taking allergy pills every day for the past 10 years on advice of a dermatologist), eczema, loose stool, hormones totally off balance (I get my period every 14 to 35 days), acne, my entire life I have been getting horrible ulcers in my mouth... sometimes I will have 5+ at a time (they can swell up the entire side of my face), headaches, back/neck pain, extreme fatigue (I can sleep 10 hours and still struggle to get up), my knuckles have recently swelled so much that I can't get my rings on (but no pain really, just stiff if I am cold), heartburn,   And now that I have cut gluten out, if I have it I get extreme stomach pain (curled up in ball on floor), bad gas, extremely swollen stomach for a few days after and a feeling of soreness is how I would explain it best... not gas sore, but just tender for the days following.  

 

Wow, sorry that is so long.  And thank you to those who take the time to read through that, haha!   I don't know anyone who is dealing with this, so I am feeling really lost.

 

I just don't know where to go from here.  My doctor doesn't seem interested in figuring it out, so I need to kind of figure out what my next step is and be proactive for myself.

 

I am tempted to just stay gluten free without doing any more tests, but I worry about my 2 daughters and how that may affect them.  Or do I just watch for signs in them and then get them tested?

 

 

 

[NoGlutenCooties]

Hi Capmish - welcome!

First... that lost, alone, what-the-heck-do-I-do-now feeling is very common, completely understandable, and you are definitely not alone!

Second... all of your symptoms sound like Celiac.  Non-Celiac Gluten Intollerance presents itself with all of the same symptoms, but without the villi damage, so it could definitely be that too.

 

The "to get tested or not to get tested" question is one only you can answer for yourself.  However, if you react horribly to gluten, and your symptoms go away when you don't eat it, you pretty much already have your answer and if it were me I would say to heck with the gluten challenge, go gluten free, and start healing and feeling better.  But that's me.

 

How old are your daughters?  There are some issues with getting very young children tested - but hopefully someone with more experience with kids can speak to that.  There's no reason why you couldn't get them the bloodtest, as long as they've been eating gluten - and then take it from there.

 

Good luck!

[NoGlutenCooties]

Oh... forgot to mention... there is a "Newbie 101" section on the "Coping with Celiac" board that has some good information in it and may give you a decent starting point.

[capmish]

Thank you so much for your reply.  I will go find the newbie 101 section.  I appreciate that

 

I have to say I think this last exposure to gluten has me feeling extremely messed up... my head is spinning and I am so emotional!  So Im hoping I won't feel as lost and sad about all this as it leaves my system, ha!

 

My daughters are aged 3 and 6. 

[NoGlutenCooties]

 So Im hoping I won't feel as lost and sad about all this as it leaves my system, ha!

 

I don't mean to discourage you... just give you a friendly head's up so it doesn't catch you by surprise... some folks have reported that some of their symptoms get worse before they get better... seems to be part of the healing process.  Could be withdrawal.  It goes away.  You may also discover other food intolerances at first... sensitivity to dairy seems to be common.  However, once your body heals you may be able to reintroduce those foods back into your diet without any problems.

[capmish]

I don't mean to discourage you... just give you a friendly head's up so it doesn't catch you by surprise... some folks have reported that some of their symptoms get worse before they get better... seems to be part of the healing process.  Could be withdrawal.  It goes away.  You may also discover other food intolerances at first... sensitivity to dairy seems to be common.  However, once your body heals you may be able to reintroduce those foods back into your diet without any problems.

Ok, thank you, that is really helpful to know.

[WestCoastGirl]

Personally, and no, I have no hard data to support this, I am not 100% convinced that NCGI is purely symptomatic and is non-harmful v. celiac. I can't believe that, for instance, throwing up and/or diarrhea, skin lesions, excessive bloating, cramping of the intestines, cramping of the stomach itself, etc. won't take their toll on our systems over time. So for me...I am fine with being gluten-free without an official celiac diagnosis.

 

I think the idea is that if it isn't officially celiac, then you're okay with not suffering long-term effects. But constant irritation to one organ or one part of your system (or more) has got to take its toll and possibly ultimately destroy tissue, even if not specifically villi.

 

Again, I'm not a doctor and I have no links to support this...but it's just common sense.

 

I can't see a good reason to continue to eat gluten and suffer symptoms even if it's "only" NCGI. So...do you need an official DX to justify going gluten-free? To me, no. (And not to you either, you said it yourself above, how do people live that way?) If you wish to have a DX, then by all means pursue testing, I am not trying to discourage you. Just offering another possible part of the equation that might be overlooked.

 

As for your children, there's no harm in getting them officially tested, if they're still eating gluten. It's up to you if you want to continue eating in order to have the tests. But by that same token, considering gluten insensitivities in general seem to be genetic, it's likely that even if your children test negative for celiac, they will also probably have to be gluten-free for their own comfort if they are having symptoms similar to yours. Bottom line, it really is your choice, but ultimately? I believe, based on your post, that you will never be able to "safely" eat gluten.

[NoGlutenCooties]

Personally, and no, I have no hard data to support this, I am not 100% convinced that NCGI is purely symptomatic and is non-harmful v. celiac. I can't believe that, for instance, throwing up and/or diarrhea, skin lesions, excessive bloating, cramping of the intestines, cramping of the stomach itself, etc. won't take their toll on our systems over time. So for me...I am fine with being gluten-free without an official celiac diagnosis.

 

...

 

Again, I'm not a doctor and I have no links to support this...but it's just common sense.

 

<set sarcasm on>

What?  You mean throwing up and having your body hurt and having diarrhea isn't healthy?  How could *that* possibly cause any issues??

<set sarcasm off>

 

I completely agree with you and didn't mean to imply that NCGI wasn't harmful just because it doesn't damage the villi.  I think you're right... common sense would tell you that all of these symptoms have to indicate some underlying issue, and also carry with them their own unhealthy effects on the body.  There's much to be said for common sense!  (unfortunately... it's not always all that "common"... *sigh*)

[capmish]

Thank you so much for all the comments!  

 

WestCoastGirl, what you wrote really resonated with me.  I needed to hear that.  You are so so right.  

 

I think a part of it is that if I had an official diagnosis, I would feel like people (family & friends mainly) would take it more seriously.   

[cyclinglady]

Hi!  

 

I was officially diagnosed this year, but my husband has been gluten-free for 12 years per the advice of his GP and my allergist.  It was hard that first year he went gluten free, but we all made the adjustment.  I admit, it's been way easier for the family/friends to accept my diagnosis though.  Luckily, my family had food allergies too, so claiming a "wheat allergy" wasn't so far fetched.

 

So, it is possible to go gluten-free on your own successfully.  My husband refuses to do a gluten challenge.  He knows that gluten makes him sick, so why bother?

 

I have a 12 year old.  She eats gluten, but outside of the house.  I buy stuff for her school lunches or I pick up fast food as a treat.  She likes all my gluten-free baking and of course loves ice cream!   I also make her wash her hands prior to coming into the house back from school (or anywhere else) as we keep a gluten free house.  My daughter's healthy and she'll get tested in January, when I am assured that she won't be denied health insurance (we are self-employed and pay for our own insurance).    Dumb, but I've been through the wringer trying to get health insurance for our family due to pre-existing conditions.

 

Take care!

[scrcdawn]

You could be me

I had horrible PMS my entire life with no cycle at all, and the pain with it was crippling.  I then started with joint pain and stiffness in my hands ( thought was RA but no), pain started spreading, hands would go numb, muscle pain, insomnia, severe constipation ( I once needed 5 doses of Miralax, 2 dulcolax and a suppository to go after 5 days), night sweats and more.  The worst was face pain so bad I felt like someone used me as a punching bag.  Now doc says I have Fibromyalgia.  Now I am on pain meds, sleep meds and meds for PMS. 

I work in a hospital, and could not exist like this.

I researched Fibro treatments and some had good luck going gluten-free.

In a week most of my symptoms went away.

I started eating wheat again, it all came back.

I had been gluten free 2 months when I followed up with my doc and felt like a new person, so no Fibro, but gluten problem.

I cannot get tested, I will NOT put my body through that again to get a definitive diagnosis.  I was genetically tested, I have a  rare potential celiac gene, ( DQ2.2) and cannot eat gluten that is enough for me.

My cycles are now a perfect 28 days ( never had that in 30 some years), the PMS is gone, the pain is gone and I feel wonderful.

I am off all the meds.

You can still have your kids tested and take it from there.

 

It is why we say we "practice medicine"  it is not perfect, and I have seen some crazy stuff in my 20 years in the field, so I just trust in myself and what makes me feel healthy.