Three Months In

[SLLRunner]

Hi everyone,

Many of you already know my saga of trying to get properly tested for celiac, but it never actually happened. For those who don't know my story, I dropped that insurance when I changed jobs and went a different route and ended up with a very kind GI and registered dietitian. The GI put me on a low FODMAP diet with dietitian supervision.

This was in September, and since then I have followed the dietary plan fairly well, which calls for no wheat (which equates to no gluten for me because I don't like rye or barley). I have "challenged" foods as required, except for gluten, and I none of the regular foods cause me any digestive issues.

I told the GI and dietitian that I will not be challenging gluten because I've had 2 experiences where I did not eat gluten for awhile, added it back it for the testing, and got sick.  They were very understanding, and have concluded that I might have a wheat intolerance rather than celiac.

Well, this last Friday at a party, I had a chicken dish without realizing it had flour it in. The only reason I figured this out is because (1) not long after I ate it I had horrible heartburn stomach issue (still feeling ill 2 days later), which I had not had in awhile, (2) I looked up the ingredients and, sure enough, the chicken is pre-cooked in flour, (3) I don't have issues with any of the other ingredients in the dish. Of course, lesson learned: don't assume a chicken dish is just a chicken dish.

In any event, this is the first time I am aware that I've gotten glutened, and it's horrible.  Really horrible.

When I cut wheat out in September, I made up my mind that this was a lifetime thing because I know that insurance generally does not allow for complete celiac testing unless you pay for it (I offered to pay for it at the last insurance, but it was no deal) or you are in dire circumstances and the doctors can't find out what's wrong with you. 

It's really tough cutting out gluten without a diagnosis.  The man tries to be supportive and does cook gluten free for me, but he sometimes makes remarks about my dietary choices that bug me.

Family meals are another thing-they think I'm just on some weird kick, even though I qualify turning down the bread and other gluten products with "Dr. orders" or tell them I've discovered wheat does not sit well with me.  I will bring something to share that is gluten free, but I don't think this sits very well with them.  I've gotten to the point where I want to turn down family dinners. I am tired of trying to justify eating a certain way. 

Thanks for reading, guys. Any feedback is welcome.

[GFinDC]

Hi SLLRunner,

Sometimes people just don't get a diagnosis.  There's the option of doing a gluten challenge for testing, but if the symptoms are too bad then that is pretty much out of the question.  You could do some undercover testing yourself if you are willing.  You could eat a barley  full meal and see if you have a reaction   And later eat a rye full meal and see if you have a reaction.  Personally I am not willing to try that because I don't like being sick and in pain all that much.  Wimpy, I know.  But it is an option that would maybe prove something to yourself, although it's not much except anecdotal evidence for others.

If the testing methods were 100% and we could get doctors to actually test people for celiac disease, we might up the diagnosed celiac rate to 50% or so.  Instead of the approximate 5% to 10% diagnosed rate it is now.

You've only been gluten-free for 3 months right?  It might take your friends and family a while longer than that to adjust.  Sometimes people just don't get it through their heads though, and there is not much we can do about that.   Maybe you could get a gluten free t-shirt or hat to wear to family get togethers.

Unfortunately (?) sometimes men have a habit of joking about things rather than taking them seriously.   But we can sometimes fix flat tires so it's not all bad...

[cyclinglady]

Hey SSLRunner!

Sorry to hear you were glutened.  I am sorrier that you are not getting enough family support.  Although harder without a diagnosis, remaining gluten-free can be done.  My hubby has been gluten free for 15 years.  No easy feat.  He got a lot of eye-rolling, etc.  Family was pretty good about being supportive.  My family has lots of allergy and AI issues.  So, we have learned to work around dairy, gluten and nut allergies/intolerances with all our extended family.  

Just keep persevering.  Your health is important!  Sending gluten-free wishes your way!  

[SLLRunner]

@GFinDC and @cyclinglady, thank you for the support. I know adjustment takes time, and I know with 100% certainty that my partner is not trying to be non-supportive, he just doesn't know how to handle what is going on with me.

GFinDC, I can't stand the taste of barley or rye, so I'm better off just sticking with the plan as it is now. I can do this, I know I can.