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20 Comments

  1. 1

    Beth

    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.

    Reply
    1. 1.1

      Gluten Dude

      I will do my best…promise.

      Reply
  2. 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.

    Reply
    1. 2.1

      Marlene

      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.

      Reply
  3. 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!

    Reply
    1. 3.1

      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).

      Reply
      1. 3.1.1

        Sybil Nassau

        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.

        Reply
  4. 4

    Lauren

    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.

    Reply
    1. 4.1

      Rob

      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.

      Reply
    2. 4.2

      Sybil M Nassau

      request a genetic test first, looking for one or both genes- DQ 8 OR DQ11

      Reply
  5. 5

    Jen M

    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!

    Reply
    1. 5.1

      Gluten Dude

      Thanks for the info Jen.

      Reply
  6. 6

    Jen M

    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.

    Reply
  7. 7

    Sharon

    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.)

    Reply
  8. 8

    Gail Dylewski

    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!

    Reply
    1. 8.1

      Gluten Dude

      Hi Gail…thanks. Celiac affects 1 in 133 (but many go undiagnosed…sadly.)

      Reply
  9. 9

    Cindy

    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?

    Reply
  10. 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.

    Reply
  11. 11

    LondonLady

    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.

    Reply
  12. 12

    Sara

    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.

    Reply

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