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Organizing My Thoughts For The Doctor

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My kids need to be tested for celiac. I've been trying to organize my thoughts so that I have the best chance of convincing my doctor to listen to me.

 

Here's some of what I am thinking about telling him:

 

"You know, I changed my kids diets and removed most gluten several years ago, due to their skin issues. But now I'm realizing that I should have had them tested for celiac first before making any dietary changes. In the long run, gluten free is a very difficult diet to have to follow and I don't want to needlessly restrict their options, if they don't have a real issue with it. It's also very difficult to get accomodations for children in school or camp without some sort of diagnosis. I would like to add gluten back into their diet and pursue celiac testing for them."

 

And then show him whatever literature is applicable and discuss the gluten challenge.

 

I'm pretty sure that my doctor will be skeptical that celiac can even exist in the absence of GI symptoms, so that's another objection that I'll have to most likely cross as well.

 

Is there any sheet of information that is a very concise summary of the points that I mentioned? I know that he likely won't read stacks of paper, so I had better nail it down to the absolute bare bones and the main points.

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I am curious how old your children are, as it would shape my comments. I would also be more concerned about risking my own health and wellness if our family ever contemplated a gluten challenge for family members. We currently maintain a gluten free home. Any kid challenges we do are low level (cross contamination) in situations where we want to try and relax our protocols. We have found that to be more than enough challenge for our kids. I am not sure of your medical history, so I don't fully understand why you are asking him about the challenge at the level of detail you provide. We started our food challenges (dairy and soy) by discussing with our doctor that we had reached a level of comfort that we were in a place to do the challenges. We discussed our emergency/allergy action plans should we encounter problems. I could understand reviewing the type of notes or documentation that you plan to take while performing the challenges and a general procedure of how you plan to do testing....possibly with regards to any risks that you may be taking with your own health (your signature makes your reactions seem serious).

I think it is also helpful to recognise that gluten induced skin issues are not always so straight forward. Our gene test results have been helpful in guiding us through our diagnosis and troubleshooting periods. Do you know your children's genetic risk?

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My children are 5 and 7 years old. I maintain a 99% gluten free home. (my husband is a gluten eater, but anything that comes in the house has to be carefully segregated or pre-packaged and can't be cooked on my pans.) If I were to do a gluten challenge for the kids, I would probably take the bread outside, make their sandwiches outside, and make them eat them outside and then wash up before coming back in the house. LOL!

 

What are other possibilities for gluten induced skin issues, other than celiac?

 

No, I don't know my children's genetic risk factors yet.

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You pay the Dr. If you want them tested, tell them that.  You don't really own them an explanation at all.  If they want a reason to test, tell them that all first level relatives should be tested. They aren't going to look up your test results to say "Oh but you aren't a confirmed dx." It's a bit of non-truth telling but would be the easiest way about it.

 

 

They won't appreciate your research, reading or articles you bring in in most/all cases. Most Dr's think they are pretty up to date on things even of they aren't.

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That's tricky. I had an awful time convincing doctors to test my daughter, and she had pretty classic symptoms. Despite projectile vomiting, swollen belly, neurological problems, and daily tummy aches that went on for years, we had multiple doctors tell us she couldn't possibly have anything really wrong because she was tall for her age! I had to take her to three different doctors before we finally found one who listened. I sure hope you have better luck! It was incredibly frustrating, but I do have a couple suggestions:

1. If it's a pediatrician/primary care doctor you're seeing, don't expect them to know anything at all about a gluten challenge. They may not even know that eating gluten is necessary before testing, and even if they're aware that it is, they are probably simply not informed enough about it to give you any good advice. I wouldn't even bother getting into that issue at all - I'd simply try to get the doctor to commit to ordering the blood tests. Try to get them to give you the lab slip now, and then simply take it and do the challenge on your own, then take the slip to the lab at the appropriate time. While there's no point doing the challenge if the doctor won't order the tests at the end, there's also not much point trying to convince the doctor that a certain length of challenge is necessary to improve the tests' accuracy (if they don't already know that).

2. Tell them about your own very bad reaction to gluten, and say that you suspect that you have it (if that's the case) but could not complete testing because it made you too sick. Provide a simple brochure saying that all first-degree relatives of celiacs should be tested. If necessary, imply that it would be irresponsible not to order the tests if your children might be at risk. You could also say that your own doctor recommended getting your kids tested, if they did. That's part of what finally convinced my daughter's third doctor to test her (even though I didn't have a clear diagnosis either - but I had a long-standing history of problems consistent with celiac, including a hospitalization for ataxia, and my daughter's doctor immediately took note when I brought that up).

3. I'd avoid emphasizing the rashes and skin issues (unless they were really horrible), except to mention them briefly as possible symptoms in the past. Rashes do have many causes, and even if gluten actually did cause your kids' rashes the doctor probably won't see it as very strong evidence pointing to a gluten problem.

In general, I guess my advice is to appeal to the doctor's sense of responsibility and desire not to miss what could turn out to be a real problem if undiagnosed. Flattery can help too, as in "We were never able to figure out what was causing problem x before, but I'm hoping you'll be the one to help us get to the bottom of this and determine whether gluten was causing it!" In the end that's what worked for me - whereas I failed to convince doctors to test my daughter based on symptoms lists, PubMed article abstracts, and in other rational ways, a simple "I hope you're better than other doctors and you're smart enough to know she should be tested" line was successful. Good luck!

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Skin issues are really my kids main symptom. My daughter's is clearly triggered by wheat, even 1/4 of a slice of bread or 1 cookie will cause her to develop a rash in the exact same place. Other than that...she's had some tooth problems at an early age and has vitiligo. 

 

So I think that I might go by the "family members should be tested" mantra. 

 

My kids doctor IS my doctor, so he has a record of my medical history. (my kids see a family practice doctor, not a ped)

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We ended up at a respected dermatologist trying to figure out our daughters eczema like issues that were horrid from exposures at school. Our dermatologist indicated that she sees gluten induced skin issues in patients separate from the classic celiac skin issue of DH. We were discussing the skin biopsy approach to verifying "celiac". Because it was not presenting like DH she did not feel that the skin biopsy would help us prove anything. Our son gets a psoriasis type rash in response to gluten exposure. Since his sisters had already paved the way demonstrating that not everyone reacts to gluten in the exact same way (we had two hospitalizations with our oldest following chronic gluten exposures at school), doctors have been much more understanding of our family condition.

Our kids do not want to eat gluten. Do your children want to do a gluten trial? Our akin issues are so bad that we would not want to endure a challenge. I suppose the school challenge was that and persisted with chronic skin issues during the school week that would clear up over the weekends only to become excruciating once back at school. Sine it was "just skin" issues doctors would not intervene. After about 9 months of this repeated cycle we ended up with severe and debilitating joint issues that landed us in hospital and eventually found us with rheumatology. Two hospitalizations with one surgery that didn't resolve a potential "something else, not related to gluten issues" ended with a reasonable diagnosis and terrified us from ever attempting a gluten challenge again until our kids are old enough to make the decision for themselves.

We do not find living gluten free terribly burdensome, but moving to a location with better awareness and respect for our medical condition has made it seem so easy compared to the battles we had before. We do run celiac panels when troubleshooting issues as a check for compliance with diet and a status for any flags that can show up in those tests. Our doctors do not object to testing when we simply ask for it to be done. I would do the research and develop your plan. Then review the plan with your doctor.

Another way to do a gluten challenge is to allow your children to eat school lunch. We considered that approach but the severity of our issues made everyone uncomfortable with that liability. If you want to take that approach, you could work over the summer to make sure that they were able to have some preliminary gluten exposures without devastating results. Then the long term exposure could be done at school. Good luck sorting out your plan!

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So is there a separate skin issue that's connected to gluten, but is not celiac or DH? How careful do you need to be in regards to a gluten-free diet, if you have only gluten induced eczema? 

 

My kids are homeschooled, so unfortunately there's no school lunch option.

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Our family experiences gluten induced skin issues that seem to be "separate" from the celiac because we can get some relief with antihistamines (sometimes, not always).  We are genetically at high risk for celiac, and the child that started us on this path has never in her life been able to tolerate any amount of gluten without horrible results.  Since then we have had severe gluten induced issues that appear on an allergy spectrum after two other family members went gluten free to help make managing the severity of the gluten issues for the youngest child easier.

 

While our skin issues were what started the medical intervention campaign for better accommodation at school, it took far more serious reactions (immediately life-threatening instead of just a deterioration of quality of life) to gain more meaningful medical support.  We have found that the most effective way to get general accommodation is to have allergy action plans in place for all family members.  We have also found our current location to be awesomely accommodating for our medical needs whenever needed (like holiday programs designed for child learning experiences, our current outside of school hours care provider, and our school).  Our doctor signs the plans that I write up and bring to his office, and it is updated annually.  We even have an "allergy action plan" for our more classic celiac daughter that prescribes how to support her should she find herself having a reaction.  We also wore medical alert bracelets when we lived in the US because of the severity of our issues at that time.

 

We have to be very diligent with our gluten free diets and environments, but we seem to be on an unusual mix of spectrums.  As I described above, the eczema issues for us tend to eventually lead to severe, debilitating and immediately life-threatening conditions.  Now we try to nip it in the bud at the START of the skin issues because our experience with chronic skin issues was traumatizing.  And chronic skin issues really suck in my humble opinion, even when it is "just" skin issues.  They are embarrassing, prone to infection, deteriorating of your largest organ, uncomfortable, unsightly . . . .and sometimes they are simply excruciatingly painful - even when it doesn't "look" that bad!

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Thanks for sharing. I noticed that you used the word "allergy." Are your kids gluten issues considered a wheat allergy or is it something different?

 

My oldest will break out in a rash after gluten exposure, but it can take up to 12 hours to kick in, so I've thought that it really didn't fit the profile of an allergy.

 

I just want to know what in the world is going on, so I can make a long term plan. 

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Any reaction that doesn't occur within 2 hours is not an allergy.  There are other issues what can happen after that time frame (like FPIES or EE).  An allergic reaction is typically 20 minutes to 2 hours after ingestion but it can happen faster. 

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Our kids are generally considered to have allergy and celiac (autoimmune) issues.  They each are different in their responses, but all seem to cover both spectrums.  Atopy or atopic is another word that can also be used to describe our general nature in addition to the celiac.

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Food protein induced entercolitis syndrome and eosinophilic esophogitis. We had our now 9yo tested for EE at 12 mos, but no one told us at the time the diet he and I were on wouldn't show symptoms anyways even if he had it. Thanks Drs. I'm going to message you.

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