BlessedMommy

No problem! I totally understand that, Stephanie.

Yes, I agree that my experience was probably more the exception rather than the rule. 

Oh yeah, if you can cook for her, that would be really neat!

When I was dating my husband, I know that I would've been super impressed if he went and put together a nice meal or a picnic.

BlessedMommy, a TIA is celiac related?!?

It can be, yes. https://www.celiac.com/forums/topic/68665-strokes-and-tias-transient-ischemic-attacks/

In many case, I had many days of headaches on gluten before I developed speech problems and then numbness on my right side. I went to the ER and the doctors ran a CT scan which came back normal and diagnosed my problems as a TIA. I quit the gluten immediately and the headaches started going away. In a few days, I felt totally normal and I've never had anything like that happen since. I wouldn't do another gluten trial for a million dollars, it's just not worth it to me. I still remember the utter terror of not being able to form words correctly, even though I knew in my head what I wanted to say.

The cake sounds awesome!

I had very severe issues during my gluten challenge (neurological) and I've had to accept the fact that although I have obvious gluten issues, I will never be diagnosed and for my own safety can never attempt another gluten challenge, because of the risk of going on to have another TIA or worse yet, having a full blown stroke. That is hard for me, because I would've preferred the certainty of a DX, but I'm having to accept that it will never happen.

You will be surprised though at how well you can do without a DX. Those close to me understand why I'm as strict as a Dx'ed celiac on my diet and my inlaws went so far as to buy a brand new grill for gluten free only items.

If you're certain of what you need to do, then you've got the most important thing right there.

Good luck on whatever you decide to do!

Yep, I'm just going to add in 1/2 to 1 regular sandwich per day and still keep my house at the same level of sanitation gluten free wise.

I ate a lot of gluten during my own challenge and possibly I could've made it through (but maybe not, who knows) if I would've stuck to the 1-2 pieces of bread per day thing.

As far as my medical history, I normally rarely get headaches and had no history of migraines at that time. After about 3 days of gluten challenge, I got daily chronic headaches that culminated in a TIA (transient ischemic attack or mini-stroke) around day 10. My CT scan came back normal and my doctor declined to run any other neurological tests. He said that it seemed clear enough that it was gluten related, so stay away from gluten. 

That was over 4 years ago and I've never had another TIA since. 

DD's nurse said that she would make a note for the doctor to give me a call. The doctor doesn't get back in until next week.

The person that I talked to at DS's office readily told me that doing a gluten challenge should be fine.

So here we go! Wish us luck and hopefully some answers.

^Yep, that exactly!

Good luck! 

My doctor refused to do allergy testing and told me to go home and experiment. Yes, those two were eliminated at the same time.

So, thank you everyone for your patience and helping me talk through this. I've decided that today I'm going to call both my kids' doctors' offices and let them know that I want to do a gluten challenge with the kids. (I have a younger kid who is also in limbo land and his problems are even more vague)

Assuming that the doctor's offices don't tell me otherwise, I'm going to start a gluten challenge ASAP with both of them. I'm really sick and tired of limbo land. 

With my younger kid, he's had times where he got gluten and had no obvious reaction. I'm just going to let his doctor know that I really don't want to restrict his diet for no good reason and plan to intro gluten again. I'll worry about the dairy later.

Thanks again for the support! I'll let you know how it goes.

That's a pretty vague thing though to immediately pull foods. I don't get why Dr's are so quick to pull things before investigating things   

Yes, I agree. I don't want to have her on a restrictive diet solely because of something like this. That's why I'm trying to investigate further.

ravenswoodglass, that is a good idea to do a gluten challenge before the appointment. My appointment is on September 10. Would that be a long enough gluten challenge or should I push the appointment later?

She gets a rash after gluten exposure. When she was on gluten full time, it was very painful, raw, red and bleeding. That primary symptom was why the doctor recommended an elimination diet. Her rash cleared through elimination of gluten and dairy. 

She does typically sneak something with gluten once in awhile. And does get CC'ed and other forms of exposure when not at home.

My home is 99% gluten-free and I stopped buying my husband fun gluteny snacks, so she really doesn't get exposed at home anymore.

I'm afraid that she will end up with neurological issues like I did. I never had had gluten related headaches before that point and my symptoms changed when I did the gluten challenge. (my initial gluten symptom was a very severe skin rash.) I'm also afraid of back lash of people thinking that I'm a bad parent for feeding her gluten when I know it causes some issues.

What was in the vegetable salad? Was it a classic green salad or something more complex?

Yes, I think that we need to do a gluten challenge for her. My daughter is perfectly willing to do one, as she hates avoiding gluten and would much rather not be gluten free if it's not necessary! LOL!

Her diet could be classified as "gluten light" and I seriously doubt that she's been eating enough gluten to produce antibodies if she did have celiac.

I would start a gluten challenge for her today if I was certain that it would not seriously harm her. However, with my own history of neurological problems in my gluten challenge, I hesitate to do one for her without medical supervision. 

Is it considered okay to do a gluten challenge without seeing a doctor first if you're careful and don't overdo the gluten?

If I could get her through a challenge, I know that we could test her one way or the other, even without doctor help if necessary, because the celiac panel can be ordered through a private lab if needed.

I wish that the 3 day gluten challenge tests were available right now!

I think that maybe I'm getting too prematurely worried. I think that the doctor needs to know our history and our concerns and that I don't want to have to unnecessarily restrict my kid's diet, but that I don't feel like I can feed my kid regular food without consequence either. Then hopefully we can start the process of figuring this thing out and end our time in ambiguity. 

I guess all the posts on here about doctors not listening have gotten me a bit worried. 

I will post an update after I've seen her new doctor. 

Should I ask the doctor for the genetic test right off the bat for my daughter then? If it was negative, then we could rule out celiac totally. That would be cool! My issue is that my daughter has reactions to gluten, has problems with dietary compliance, and due to bad medical advice, I tried to take her gluten free years ago and now we are stuck in the middle in a very uncomfortable spot. 

I haven't done the genetic tests myself, as I'm strictly gluten-free anyway. 

It doesn't matter what she has, I just want to know one way or another and have an actual plan for management. Whether that is an untestable sensitivity, an atypical wheat allergy, or some completely different problem.

Things are only going to get more complicated as she gets older (camp, boarding school, etc.) and has more people offering her food.

We just need to know for sure what is actually going on and I feel frustrated that we tried to go gluten-free without a DX (and frustrated that my first doctor recommended an elimination diet instead of ordering tests). I won't ever try to put another kid on a gluten-free diet without laboratory proof. 

Maybe "dinner" was the wrong word. I fixed my kids a big meal about 2 hours ago, and we are going over there in 40 minutes or so, so it will basically amount to a post dinner snack. 

I'm not DX'ed and honestly very few people really care whether I have celiac or not. It's just not that big of a deal. As long as you know in your mind what you need to do and are 100% strict and consistent people will quickly figure that out and those who are true friends will support you.

My inlaw's went so far as to buy me a new grill for gluten free only items with their own money.

I was thinking though that even folks who didn't have their lighter meal in the evening could find useful variations on this theme. Like go to a bonfire at your friend's house and roast potatoes in tin foil or something.

LOL! Our friends and I normally have our heavier meal at lunch, so this is completely normal for us.

I'm putting together a descriptive paper on my daughter's symptoms, family history, etc. to take to her new doctor for DX. (her new doctor actually really likes detailed notes like that from patients) The new doc is so booked up that I can't get my daughter in to see her until September, so I have lots of time to try and get things as concise and descriptive as possible.

In order to give the most weight to the family history part, should I put down that I am a "presumed celiac?" Is that an accurate term to use to describe? Which method of description will help the doctor to best realize that gluten issues run in the family and my daughter should be tested, despite my lack of ability to get through my gluten challenge?

We are going over to our friend's house tonight and are having watermelon, air popped popcorn, and freshly made fruit sorbet. (just made of frozen whole fruit run through a Champion dinner)

I'm so stoked that I don't have to worry about gluten and CC tonight. (everything is gluten free and there's not much opportunity to CC anything, since nothing is cooked or stirred and nobody will be making gluten at the same time)

If you can get together with friends and eat simple food, I highly recommend it! 

Don't beat yourself up, I think that we've all had those moments. I remember once finding out that a SALAD that I thought was gluten-free and had checked the ingredients with the lady who made it, had a seasoning with soy sauce in it in the homemade dressing.  I thought that I had ingredient checked and apparently I wasn't thorough enough.

Yep, a lot of enchilada sauce has wheat. This one is an example of a gluteny enchilada sauce: Open Original Shared Link

My favorite enchilada sauce is La Victoria. It is gluten free, says so clearly on the label and has fairly simple ingredients. 

Open Original Shared Link

It seems like the best bet is maybe to do the challenge for the biopsy, since it's a shorter challenge.

Unfortunately there are no good or easy diagnostic answers for people who are severely intolerant to gluten and already gluten free and don't have a formal DX. I could never survive a 12 week gluten challenge, so I opt to live 100% gluten free and treat my condition as celiac, but there are always lingering questions in my mind. I would like to know if I really have celiac, but I don't have the luxury of being able to find out. 

My gluten trial resulted in a trip to the hospital. 

My three recommendations for people who are thinking of a gluten trial is to not overdo the gluten and to get medical supervision and use common sense. 

As a rule of thumb for celiacs/NCGI, when dealing with food provided by others it's best to stick with single ingredient foods unless the person has been educated on celiac disease. The enchiladas may have been cross contaminated. Or they may have had actual wheat in them--not all enchilada sauces are gluten free. 

If you're changing over to gluten free, are you finished with all testing? It's difficult to get any celiac testing while gluten free, because being gluten free causes your antibody levels to fall and renders tests invalid, generally speaking.

Best wishes on finding out your DX!