How To Go About This?

[Heidi S.]

I will try to make this short but here is the scoop.

I am 25 years old and suffered my entire life with misdiagnosed IBS since 3. Recently told to go gluten free by Gastro with major damage but blood test negative and scope "he forgot to run the celiac panel on biopsies" don't get me started. I am living gluten free and have never felt better. My sister and mother are both IgG and IgA primary immune deficient but I am not. 100% positive I am a very sensitive celiac or gluten intolerance but diagnosis..nothing yet.

Fast forward, my sister has a daughter and she has " Aunt Heidi Days" as she calls it A LOT. Always stuck in the bathroom, had accidents potty training and diarrhea all the time but with no explanation. She started kindergarten and school food, she drastically worsened, I finally convince my sister to pursue a celiac or gluten-intolerance route. Blood test negative, no surprise, but started the gluten free diet to see if it helped.

Diarrhea has gone away and the skin rashes. She isn't in the bathroom and says she feels great! My sister had worked out everything with her daughter's teacher for substitute food and always packed her lunch for the past 3 months. Until Thursday, when there was a substitute teacher who gave her a cookie. She came home sick stuck in the bathroom with diarrhea all night. Now my sister is a true believer that her daughter has what I have.

Now what to do. The after school daycare that my sister uses WILL NOT recognize her daughter's gluten free diet without a diagnosed doctors note and won't allow her to bring her own snacks. My sister is not a fan of testing and due to military insurance the closest ped gastro is a 2 hour drive. As a concerned Aunt I understand she does not want the testing I have undergone over the past 20 years for her child. She does need a diagnoses to be recognized in a lot of school programs. The pediatrician wants to refer to a specialist and not help with more testing..

I was hoping maybe the parents had some suggestions:

Would Allergy testing in town help, as a first step? Can allergists test for celiac in stool samples or gene tests?

Or waste of time start with Gastro 2 hours away (dragging 3 children, husband in Iraq)? He is not a celiac specialist gastro but only one covered by insurance. Is the testing worth the pain, has other have good experiences?

All suggestions helpful and appreciated I am stressed and don't know what advice to give my sister. I wish I had a diagnosis to help answer her questions but I don't.

[taweavmo3]

That's a tough one. If it were me, I would really press the pediatrician for a note for the after school program. Or make the effort to see the GI doc, and stress the response to the diet and how sick she got from one cookie. Hopefully with the family history of Celiac and dietary response, that may be enough. Maybe asking for a "gluten intolerance" note would be easier to get, rather than a note saying she has a diagnosis of Celiac. I don't know, I wish I had more ideas for you! I think it's really sad that a parent can't choose what their child eats without a note from the doctor, especially if she isn't asking the program to make any extra effort. That would really be frustrating!

[Jestgar]

A naturopath?

Start asking around to see if you can find a doc that will diagnose on symptoms?

Switch daycares?

Tell the daycare that you are prepared to take her to the ER every time, and will document that she is only gets sick when she's been at their facility?

[missy'smom]

It might not be a bad idea to do allergy testing. You have justification-rash. It's a totally different thing from celiac disease and you would not ask for testing for celiac disease, just reg. allergy testing. You never know, it might show up and give you just enough on paper to help. My son showed an immune reaction to wheat through both blood and skin testing. His doc. and allergist dismissed the results but they are there on paper. Unlike the Celiac panel(which came out neg.), it took no convincing to get the doc to approve allergy testing. We also did Enterolab testing(out of pocket)on our own.

I hear that there are other types of allergy testing and can't say which is best. I am very sensitive and showed no reaction in skin testing to wheat and others that I clearly have problems with. I may pursue other types of testing. But I am not looking for a celiac disease DX. You just have to go into it knowing that it could go either way. But it may be worth a try, esp. if insurance covers it.

[elle's mom]

Now what to do. The after school daycare that my sister uses WILL NOT recognize her daughter's gluten free diet without a diagnosed doctors note and won't allow her to bring her own snacks.

She does need a diagnoses to be recognized in a lot of school programs.

I am totally repulsed by the daycare you are describing! She does PAY to go there right!? They won't ALLOW her to bring her own snack!??? WHY?? I mean I can maybe see why a public school cannot comply with every parent's whim without a doctor's note, but this is a daycare. I don't get it. How long is she there from after school until your sister picks her up; I mean could she skip the snacks they give her? Or, if not, could she just put a snack in her backpack to eat on the way over from the school to the daycare? Get creative.

What about doing the genetic test from Enterolab? If that's positive I would imagine you could make it suffice as a doctor's note for a daycare, especially if the pediatrician would just scribble something down real quick about 'no gluten'. Usually if you badger them they will give in and just do it. With a family history and the results from her dietary changes, PLUS if she got a positive gene test: that should definately be enough for a diagnosis.

If not, I would definately find some (ANY) doctor willing to listen to your neice's story and write her a measley note. This may be crazy, but I'm totally brainstorming: maybe you can even find a celiac dr. online who would write a note, just a high hope. I know my aunt emailed someone once (just with questions though, not for a note) and he wrote her back within a day or two, I could try to find out who it was for you if you want to pursue this route. Let me know. Otherwise I would for sure consider switching daycares or making major changes to mom's schedule....Good luck, keep us posted.

[ang1e0251]

I, too, would ask the dr to write a note for her stating that she is on a gluten free diet. That should be enough. Personally, I would get her into a different day care. I think if they have that attitude they will expose her carelessly in other ways. If this is affiliated with the military, can she get some help by a push from a senior officer's wife? I know that's the way it works on the base.

As far as testing, I agree with the PP's advise. Find a dr that will be willing to dx her on the basis of dietary response. They can take into account your family history and maybe genetic testing which can be non-invasive. It would be helpful for her to have a dx before she starts public school when she will need a 504 plan to protect her.

[River Faerie]

I am really surprised at the daycare too. My son was just diasgnosed with Celiac, and started kindergarten. It wasn't like I had a note to say that he was... I went online and found some information pertaining to kids and basically wrote my own note explaining the disease, what syptoms arise in kids inluding what I see happen in him, and then wrote down what my expectations are, stating that I would provide my son with his lunches everyday. I think they were actually relieved. I know his kinder teacher was, once I explained that she doesn't have to change everything. I am willing to meet her halfway... I have trained my son to say no if in doubt. He may not be able to participate in everything, but many activities can be adjusted so that he can. I have provided some learning incentives (marshmallows, Dum Dums pops...) and I have explained that he is to immediately wash his hands after play-doh, and his desk too... He's learning. Overall, maybe I am lucky to be in a win-win situation?

[Heidi S.]

They are a federally run day care on the military base that she lives on. They told her they have 2 other children with Celiac's and have a special diet for them but they will not allow her to be on it without a note and no outside food is allowed due to allergies. She is there for 2-3 hours, right now she goes without but it breaks my sisters heart to not be able to send her with something. I think it is a funding/money issue.

Thank you for the doctor suggestion. We have one in our family, not close but may be willing to write a note saying she needs to maintain a gluten free diet. I know she needs further testing but a diagnosis takes time and she needs a note now to feel semi normal and maintain her gluten free diet now. I wish the medical field was more understanding about celiacs but I guess the frustration for all of us is there.