20 Emails in 4 Days: Part I

celiac mailbag

Dude note: I’m overwhelmed with all of your emails asking for support. I mean that in both a good way and a bad way. I’m overwhelmed that you would feel comfortable reaching out to me. But I’m overwhelmed in the sense that I now have hundreds of emails awaiting a response. I can’t get to them all but I’ll do what I can. For now, let me take care of 20 of them in 4 days. Five emails per day for four days. Here’s part 1.

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My 14 year old daughter applied for a three week program at the university of Rolla in Missouri last October. We just received notification last Thursday that she was accepted into the program. It is such an incredible honor, but now it is clouded by….oh crap, how are we going to make this possible for her? I called the school and they reassured me that the company that provides the food is able to work with all kinds of allergies. Then the next question was….is your cafeteria educated because gluten free food is no longer gluten free with cross-contamination…blah, blah, blah? He wasn’t sure but was pretty sure there were others with celiac that have no problems. I’m sure there are others with celiac. But at what point do I let go and trust? I am my daughters advocate. What questions do I need to ask? I told my daughter 3 1/2 years ago when she was diagnosed, that I didn’t want celiac to stop her from doing anything. But I am just about sick because I don’t know how to handle this. Do you have any advice for my husband and me? Thanks!

“At what point do I let go and trust?”
“I told my daughter…I didn’t want celiac to stop her from doing anything.”

I think you answered your own question. It’s an honor that she was accepted. Don’t let celiac stop you. Take precautions. Educate the school as much as humanly possible, even if it means paying them a visit in person so you can see the cafeteria with your own eyes and guide them in doing things the proper way. Make sure they understand the severity of celiac and if she get’s sick, it could ruin her entire 3 weeks.

And…since it’s only three weeks…is there an alternative besides the cafeteria? Do everything in your power to keep her safe, but let her go. She earned this. And so did you!

My 4 year old daughter is on day 4 of a gluten challenge in order to confirm Celiac Disease before she starts school in the fall. The school won’t accommodate her dietary needs, otherwise. Do you or any of your followers have any tips or advice to help her through this other than the classic, “never trust a fart” routine? She’s obviously in a lot of pain and her mood swings are off the charts, in addition to her tummy troubles. She’s already very small (borderline failure to thrive) and she’s got hardly any body fat, and I’m concerned that several more weeks of this could do more harm than it’s worth for the “official” diagnosis. Can you share this with your readers? Because I need all of the help, advice, tips & tricks, etc I can get to help get us through to the endoscopy. Is there any other way to officially confirm Celiac so that I don’t have to keep torturing her like this? Please help!

If I’m reading this correctly, your daughter has all of the celiac symptoms but has not been officially diagnosed and the school won’t accommodate her unless she has an actual diagnosis? Ugh…that’s a tough one. Assuming the school won’t change their policy, here are a few thoughts:

– I’ve been put under for every endoscopy I’ve had. Therefore, it’s an absolute painless procedure. If being awake during the endoscopy is your concern (it sure would be mine!!), find a doctor that will put her under.

– I can’t imagine having to poison your child…just awful. So sorry you gotta go thru this. The hope is to minimize the discomfort as much as possible.

– If it was me, I’d stick it out, but I know it’s a lot easier for me to say that sitting behind a keyboard. Can anyone else chime in here please?

I was diagnosed with celiac disease last week following the diagnosis of my younger sister. I have no symptoms but was told by my physician that I needed to be tested regardless. Unexpectedly blood work and EGD confirmed that I have to go gluten free for life. I am wondering, should I stop gluten cold turkey or gradually remove it from my diet over the next 6-12 months? I still have some regular bread, pasta and baking supplies in the pantry that I plan to finish over the next month. I am already replacing what is used with gluten free substitutes for these things. My GI specialist suggested that weaning myself off gluten might be easier than stopping cold turkey if I don’t have any noticeable symptoms after ingesting it, but that I needed to get serious about it before the end of the year.

So I got to wondering, what your thoughts are on this idea of weaning myself off gluten over the next several months. Would my immune system cope better with this approach, keeping me from experiencing symptoms in the long run? I am committed to a lifelong gluten free diet by the end of the year. I just think that just a few months of farewelling my gluten help with both my immune system and psychology. Let me know what you think. Should I wean myself off gluten or go cold turkey on this one?

Wow…your doctor sucks. You have an autoimmune disease where your body is attacked when you eat gluten. You got the celiac diagnosis so the doc must have seen some damage during the EGD. So the fact that you don’t have symptoms is TOTALLY IRRELEVANT. Keep eating gluten…keep damaging your intestines…risk long-term damage. Your call.

I was diagnosed with Celiac a few weeks ago and have been navigating these new waters with the help of websites like yours and several books as well as a nutritionist. One thing I’m struggling with is answering the question of why I have to take the cross-contamination issue so seriously. I am one of those sort of-silent celiacs, where I thought I had moderate IBS but was living with it for so long it became just part of my daily life. Now that I have Celiac and I am trying to take it as seriously as possible, especially because my Dr. says it was “very severe” in terms of villous atrophy at the time of my diagnosis. Many folks in my life (especially colleagues) are asking me why I need to call ahead at restaurants and avoid fries and any possibility of cross-contamination etc. etc. especially because I wasn’t “on my death bed” before. So my 2 questions are: 1) Do I really have to be this cautious? 2) What do I say to those who ask me why I need to be this cautious?

You weren’t on your death bed YET. I know you are asking for permission to NOT be careful. It won’t come from me. But I think you knew that already.

Did you see the new trailer for Deadpool 2? The main character says “Sorry I’m late. I was rounding up all the gluten in the world and launching it into space where it can’t not hurt us ever again.” I’m so sick of this.

I did see it. And I’ve had a lot of my fellow celiacs send it to me as well. Every time this happens (and yes…it keeps on happening), it’s the same cycle. I call it out. Some people get angry. Some people tell me to lighten up. Lather. Rinse. Repeat. There is no solution except for Hollywood to get a soul…and new material.

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20 thoughts on “20 Emails in 4 Days: Part I”

  1. I know you don’t have time to answer all of the emails… but keep trying. Reading these questions- even moreso than reading your responses- helps me feel much less alone. I was diagnosed just 2.5 years ago and don’t personally know anyone else with celiac. I also love reviewing the questions to imagine what I would do in that situation or what I would advise. More than anything else you do for this community, I think you help us feel less alone.

  2. Jordan’s Mom

    To the one wanted to taper off gluten until the end of the year: My guess is that you will probably extend your deadline as you get closer to it (human nature). Just do it now! My son was 13 when he was diagnosed on a Friday. I told him we would have “one last time” ceremonies for the weekend, then on Monday it would stop. So we had one last — Oreo, Krispy Kreme doughnut, mac and cheese, pasta, pizza, cookie, fried chicken, dinner roll, …….
    (No, I didn’t ask his doctor.). On Monday our gluten free life began in full force. I have doubted myself many times over the years in this decision. But as an adult (he’s 24 now) I asked him if he thinks that was an OK thing to do. He agrees whole-heatedly that it helped him to recognize and honor a last time for things he loved to eat. But notice that it was a VERY SHORT time period. He’s been gluten free ever since and is extremely vigilant to this day.

    1. I was diagnosed in in July 2011 via blood test but was told I had to keep eating gluten for my biopsy. The biopsy I think was September. My 1st Dietician appointment was in November. I gave myself until the day of my Diettician appointment to enjoy everything and anything I wanted. From the moment I left her office I was GF.

  3. The Atomic Mom

    As to question #2, if this family is in the United States, the scholl is legally required to accommodate this student with celiac and any other food allergy which had been diagnosed by a doctor. The student can have a “health action plan” added to his/het IEP, or they can create a 504 accommodation plan. But they are legally obligated to accommodate, under the ADA. Good luck family!

    1. Betsy in Michigan

      Yes to all the above! People who have allergic reactions to various types of food don’t need an endoscopy or even allergy test to confirm that. If your doctor won’t give you a strong enough “diagnosis” without a challenge and endoscopy, FIND A NEW DOCTOR! I don’t know if I have celiac or am “just” very gluten sensitive. My new GI guy said there’s no point in making myself ill doing a gluten challenge (and I know I’d be vomiting) just to make it official (I was really thinking of my kids and extended family; that they’d like to know if we have those genes).

      1. Here’s some news. The so-called Gluten Challenge is the old, time-honored way of testing for celiac, while the best way is still the endoscopy,- the Gold Standard. There are other ways being used by some GI specialists – because forcing anyone to go back to eating gluten is cruel as some docs are reporting patients getting so sick they end up in the hospital. Like giving a kid with a peanut allergy – one peanut. Instead many docs are now doing a genetic test first- if either or both of the genes are present along with some symptoms, that is a celiac diagnosis. There are also other blood tests (T-cell, low vitamin D and B) are also indicators. When the results are put together, the conclusion is usually celiac. If your doc won’t try this newer way, find a doc who will.

  4. To the parents with the 4 yo: My son is in the second grade and he does NOT have an official diagnosis. I have celiac disease and with the way my son vilantly reacts after eating gluten his doctors have been comfortable treating him as if he does have celiac without the official testing. That said, because we don’t have the official testing they, rightly so, won’t write a letter stating that my son has celiac disease thus legally making his school accommodate him. He does have a health plan at his school that basically amounts to “the school promises to try to not feed him anything that’s not brought from home” and we haven’t had any incidents to date but because we don’t have an official diagnosis I can’t make the school keep cupcakes in their freezer for when there’s birthday parties or warn me when there’s going to be a popcorn party for all the students who’ve done x or y that month to celebrate so they would either have to get some safe popcorn or allow me to send some. This has ment my son has missed out on some things, and as he gets older this means he’s going to miss out on more and more because he doesn’t have an official diagnosis. Now, in my opinion, having a kid who is already having failure to thrive issues puts a completely different spin on this (my son has been 98% since he was born)…. But, since my husband and I didn’t think this would be an issue for when our son first started school what we decided is that we would leave the decision to get an official diagnosis up to our son. Eating gluten for someone who has celiac is like poisoning yourself and while my son won’t have to go through the 7-23 years (all I have is hind sight for when mine “turned on”) like I did of poisoning myself with gluten I can’t imagine 6+ weeks of it is good for your health or fun (though probably a lot easier to recover from, though there’s always the possibility there may be some irreversible health consequences I assume for “just” those 6 weeks). I guess this is a long winded way of saying that if you don’t get the official diagnosis now there will be some doors closed to your kid; the question is is it worth those doors being closed? The doors I had closed to me were because my health wouldn’t let me participate in things due to my undiagnosed celiac, for now my son “just” has some school things that he can’t really participate in (we can manage/control the other stuff) but the day will come when he can’t go to camps or summer internships or something because they can’t accommodate every kid just because mommy says it needs to be done (which is understandable). I suspect at some point my son will ask for the testing and I’ll support him 100% on that. And if I were being 100% honest I now wish we had done the testing once he turned 6 (his GI says testing it a lot more accurate [aka far fewer false negatives] at age 6 or later) but my son is 8 now and very aware of everything so at this point so he would have to be just as committed to going theories th the pain ect tor the testing now so I still feel like letting him decide is the best course of action judging from this point going forward. Again though, my son has never had a failure to thrive issue and I know there are a lot of doctors out there who won’t just take someone’s word that they have celiac (I have the testing and I still run into that)… we’ve been really lucky with my sons pediatrician and GI dr. Just thought I’d share my experience to help you make decisions about your kid, hope it helps.

    1. Couldn’t you ask the doctor to write a letter certifying that (person’s name) requires a gluten free diet. I would think that such a letter from your child’s doctor even without mentioning celiac would suffice. Or am I missing something?

      I hate the gluten challenge. It causes friends and others in the community to naturally perceive the cross contamination issues and need for a strict, lifelong gluten free diet as a joke.

  5. Recovery from a gluten exposure is a lot longer than three weeks for many of us. Antibodies are still found in the system up to 18 months later, according to my doctor at University of Chicago!

  6. College Mom: Send her with a suitcase of safe food and ask for a microfridge. You’ll be helping her learn how to travel safely, find ways to work around her illness, and have a good experience!

    I have to do this for work travel. I can’t trust hotels, banquet halls, caterers, and restaurants. I’d lose my job being sick all the time.

    You can also help her prepare for questions from peers. I’ve found, “This is what I do to keep from getting sick as a dog. It definitely helps.” And move then on from answering too many questions. I try to keep questions to a minimum or else people see “the one with celiac disease” instead of just seeing me, and the questions never end, which can be exhausting when trying to also get to know new people and places.

    I wish I would’ve known how to travel and how to handle peer questions from the start! There’s a way to help without hovering.

  7. For the 14yo going to the summer program. The parents could get her a credit card to only be used in an emergency. Then see if the area has InstaCart or a restaurant like Mama Fu’s who will deliver GF food. Of course, you’d have to make sure the camp wouldn’t freak out over this option, but it would be a way for their daughter to get fresh food if necessary. (If she were older, I’d suggest ride share to get to a grocery store.)

  8. I was diagnosed with Celiac Sprue in 2013, at age 64, following an endoscopy. Thankfully for me, going gluten-free brought about some great changes: made my GERDS and Fibromyalgia go away! I have been gluten-free ever since because finding out I had celiac was wonderful because after being deathly sick with constant nausea, abdominal pain, diarrhea and a loss of 30 lbs. over a 4 month period, I thought I was dying of cancer! My GI doc immediately ordered an endoscopy and colonoscopy. So my diagnosis came quickly…thank God! But what surprised me, 3 weeks ago when speaking to my GI doctor, I found out that with his hundreds of patients, he only had 2 which have Celiac Sprue! Me and one other patient! I did not know how rare this disease is! Gluten Dude…keep advocating for us! You are my inspiration!

  9. For the gal that doesn’t know f she should go cold turkey or not. COLD TURKEY. There are a million hidden damages being done everyday to your body. But one major one is as long as your antibodies are elevated you have a 87% higher chance of getting non-Hodgkin lymphoma. Is some pasta worth cancer??

    To the mom with the child on the gluten challenge. Is getting the genetic test an option? If she has the gene will the school accept that as a diagnosis?

  10. ChocolateMoose

    To the person who wants to know what to say to people who ask why he’s being so cautious, ask them how cautious they would be if their meal was being prepared in a kitchen full of arsenic. Also yes, you have to be that cautious which you will especially appreciate if you start reacting to cross contamination.

  11. I would like to underscore how helpful these contributions are to my own journey with severe non-celiac gluten sensitivity. With all of the research going on around CD and NCGS, I am hopeful that more clarity around testing methodologies and diagnoses will emerge. My heart goes out to anyone going through a gluten challenge. My personal experience with celiac testing for family members in Germany, the USA, and UK shows different approaches. Despite an inconclusive intestinal biopsy one year ago, my GI did listen to my long list of health concerns, from head to toe — which all cleared up on a GF diet. After years of misery, i have a new lust for life. And if cross-contamination occurs, it hits me like a freight train. I will now heed some of the other comments about how to travel safely.

  12. To the mother of the 4 year old doing the gluten challenge,
    So I have one child with a confirmed diagnosis and one child that does not have a confirmed diagnosis. I had my doctor write a letter to the school explaining why my child could not have gluten under any circumstances and that was enough for my school. We also explained her symptoms in the letter to the school and they absolutely accepted it. Both of my children also developed autonomic dysfunction because of their celiac disease. The autonomic dysfunction was very hard to recover from and it is becoming more common in children with celiac disease. There is no way I would do a gluten challenge with my undiagnosed child. There are worse things that you can get than just celiac disease and you are putting a body at more risk by doing the challenge. That said, I do wish I had done the testing first, but not one doctor knew what was wrong with my daughter.

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Who I am. And who I'm not.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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