Is This Accurate?

[BlessedMommy]

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?

[StephanieL]

You need to be honest. It really sounds like you are trying to color the Dr's ideas but driving home the fact that YOU think this is Celiac disease.  Have you done the genetics yourself or with your kids? That could really help you know where to even start because MOST LIKELY if this is negative you aren't going to get the dx. you seem to want. 

 

Are you in need of accommodations for your kids for school? I can't remember the whole story.

[BlessedMommy]

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. 

[BlessedMommy]

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. 

[StephanieL]

Yeah. I think you are way overthinking this!  

 

It's true that there is a BIG lag in the dx of Celiac disease.  You say your daughter has issues with compliance so is she really gluten free enough that the tests wouldn't be accurate?  Personally- I would get the genetic test to start since you are in this gluten/gluten free limbo land.  It will *almost* 100% rule out Celiac disease if it's negative for the genetics. Then you can reevaluate things.  

 

If you want to know 100% what is going on you are going to eventually need to challenge for you or her. That is going to be the only way they are willing to say yes, it's Celiac. If you aren't willing to do that eventually, I would evaluate what you are willing to/want to do in figuring this out.

[BlessedMommy]

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!

[StephanieL]

We (a collective we) aren't Dr's here. You need to evaluate what you are comfortable with with the knowledge you have on it. Without knowing what issues were going on that you were attributing to gluten, safety is something you need to determine.  What were the symptoms she was dealing with? Is she getting some gluten daily? Does she "cheat' once in a while? What happens to her when she does get exposed?  What are you afraid will happen if you did do a challenge?

 

Another thing to consider is that even doing a challenge and doing the blood work, you most likely will need to keep her on gluten till you see the Dr. assuming they'll want to do a scope.

[BlessedMommy]

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.

[StephanieL]

If the main issue is a rash, have you looked at DH?  That can be biopsied pretty soon after it appears I believe (not the rash itself but an area around it).

 

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  FWIW, skin issues are very often NOT food related. Soemthing like 90% of eczema isn't food related. I know you said it cleared up after going gluten-free but it could be the diary if you pulled both at the same time and gluten isn't even an issue. 

 

The neuro issues you had are extremely rare and unusual. I wouldn't think that would be a typical reaction esp. if a skin rash is her main issue when consuming gluten.

[ravenwoodglass]

I would not advise asking for the gene test as the first testing. In the rare instance that she is a celiac that doesn't carry one of the two genes that are looked for doctors will then likely decide to exclude celiac as a possibility. That could lead to her becoming very ill and going through a lot of unneeded testing for other disease. 

Since she has been gluten light the challenge might be your best way to go. You mention her first visit with her new doctor is in Sept. Call the office and ask to speak to a nurse. Explain that you want to challenge her and ask the nurse what you should do if her symptoms become severe.

You can then do blood work at the appointment and may even be able to get them to order blood work shortly before the appointment so the results are there the first day.

If her rash should outbreak before the appointment see if you can get into see a derm. If she does have DH that is a diagnosis of celiac and no further testing is needed. 

[BlessedMommy]

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?

[SMRI]

Did you eliminate dairy and gluten at the same time?  Dairy is a huge trigger for eczema.  Has she had allergy testing done?  If not, maybe start there?

[BlessedMommy]

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.

[BlessedMommy]

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.

[StephanieL]

Did you eliminate dairy and gluten at the same time?  Dairy is a huge trigger for eczema.  Has she had allergy testing done?  If not, maybe start there?

 

Again, the things you are describing wouldn't scream out allergies either. The inaccuracy of allergy testing means it shouldn't be done just to "try and see what sticks" because of the VERY HIGH rate of false positives leading to restricting a diet unnecessarily.  Again, 80-50% of skin issues (eczema) are actually not dietary in nature.  

 

Also for a challenge, we were advised not to go "all out gluten eating" because if it is required to go back to gluten-free that will be like pulling out the rug from under them again.  Adding a glutenous snack daily is enough over a 6-8 week time period to do the testing. So keeping the house gluten-free is still good just adding in something that they won't really miss if you find out gluten is the problem is a better way to go.

 

I don't remember all the specifics of your challenge but how sure are they that your issues were caused by the challenge?

[BlessedMommy]

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. 

[BlessedMommy]

Thank you, thank you, thank you!

 

The encouragement on this thread helped me to finally take action. My son has been doing a gluten challenge since last Wednesday after I called and checked with his doctor's office. My daughter's doctor's office just called and said to go ahead and gradually start her on gluten and the doctor can order the labs when we go in next, to be drawn whenever our full gluten challenge is done.

 

It really doesn't matter what my kids have (or don't have, for that matter, my son has been doing great with the gluten challenge), I'll be happy with any answer as long as I'm reasonably confident that it's accurate. 

 

I think that my problem was that I was literally paralyzed with worry, going over every worst case scenario, to the point where I was afraid to do anything and so I was perpetually stuck in the uncomfortable middle ground. 

 

So here's to moving forward!