Living Without

This month, I’ve actually faced one the biggest health challenges of my life. And it had nothing to do with my own body. My littlest girl, who just turned 5 at the end of October, was experiencing chronic stomach pains, so the doctor suggested — in light of my own wheat allergy — that we try her on a gluten-free diet.

It’s one thing to deny yourself all the “normal” foods and goodies that other people enjoy, but quite another to have to force this kind of restriction on a small child. Arguably, this month has been harder on me than it has on her.

First off, let me say that she was actually begging me to take her to the doctor. How many 5-year-olds do that? So we can gauge the level of her discomfort. When we left the pediatrician’s office at the end of last month, I tried to make her new diet sound like a special adventure.

“You get to eat Mommy’s special foods now.”

“Mommy’s foods? Wheat-free muffins? Yay!”

It didn’t take long for that “Yay” to melt into “When can I eat wheat again?” and later, in a much more imploring tone: “When I can eat wheat again, can I have XXX??”


The bittersweet news is that her stomach pains have subsided. I keep reminding her of how much better she feels, but all she can think of is Frosted Mini-Wheats and flour tortillas.

In a few days, we’ll start slowly reintroducing wheat into her diet. I am bracing myself for the results. If she still feels well, great! But then we have to start from Ground Zero figuring out what’s wrong if and when the stomach pains return. If she starts having symptoms again, then we’ve nailed the problem — which means facing a lifetime of living without wheat. (I’m managing OK, but for me it’s just an inconvenience with the added benefit of keeping my carb intake down)

Think for a moment, if you will, about what this means for a child: NO regular pasta whatsoever; NO regular baked goods, including muffins, bagels, donuts, cookies, crackers, etc.; NO breaded items, like fish sticks and chicken nuggets; NO pizza crust or cous-cous or regular waffles or pancakes. This means always being the weird kid with food allergies. Always having to bring your strange special foods from home. Never being able to eat birthday cake. It’s killing me.

As ever, hats off to the parents who deal with this, in many cases with children whose celiac is so severe that even a few crumbs of gluten can make them sick. I may be knocking on their door soon.


24 Responses

  1. Sarah
    Sarah November 28, 2007 at 7:33 am | | Reply

    I have personal comments for this story. I can relate on how it is to live with Celiac and Type 1 (I also have Hashi’s, asthma, and am allergic to every food and inhalant they tested me for).

    First of all, I am one of those Celiacs who cannot have their food exposed to even a crumb of gluten. My food cannot touch anything with gluten, forget about ever being able to eat something without making it at home or not reading a label or calling a company. As a result I make all of my own food for the most part and eat VERY healthy.

    In a way, perhaps it’s a blessing. Your daughter really will be much better off without all the processed junk out there. I would also keep her off gluten even if she doesn’t react, studies have linked gluten and casein to various autoimmune diseases aside from Celiac in those genetically at risk, including Type 1 diabetes. Some studies have even shown a reversal of T1 antibodies on a gluten free diet if caught early on. Right now the jury is out. But it can’t hurt to be safe.

    If I were to have kids, I would have them on a strict gluten/casein free diet from birth.

    I also am concerned your doctor never gave you any proper info about Celiac! Celiac is NOT an “allergy” per se, it is an autoimmune disease immune response (IgG/IgA)!

    Also, I hope you are avoiding more than just wheat! Gluten is in rye, barley, spelt, contaminated oats, and like 40 other grains! Also, cross-contamination can cause damage even if you don’t feel symptoms and must be avoided!

    Did you know that artificial pepper is not usually gluten free?

    I have to add that I actually have an actual wheat allergy (and milk allergy) on top of Celiac. An allergy is considered an IgE immune response. This is partially why I have such a severe response. But some Celiacs alone do to.

    When my food touches wheat, not only do I get the stomach issues and intestinal damage, but my blood pressure drops, my blood sugar drops instantly for hours, my heartbeat gets irregular, I get dizzy, and I have trouble breathing. Some people have swelling and hives and their throat closes up. This is a true wheat allergy. I have a “moderate” form of anaphylaxis.

    Although there is nothing that can be done for the Celiac reaction, for the wheat allergy I have to immediately take benadryl and my inhalers. I have not yet had to use my Epi-Pen.

    I just hope your doctor has given you correct info about Celiac. Exposure to gluten in a Celiac can (supposedly) increase the risk for further autoimmune diseases, lead to cancer, and cause malnutrition and erratic blood sugars. It is not really the benign “disease” once thought.

    Some (gluten free) food for thought…

  2. Patrick
    Patrick November 28, 2007 at 7:37 am | | Reply

    As the father of a 9 year old whose food allergies include peanuts, tree nuts, sesame seeds, dairy and eggs, most of which are life threatening, I can certainly empathize with you. But one things I can also say is that kids are resilient and often times, more up to the task than their parents. My little boy has learned to question everything he eats, carries an epi-pen and still
    manages to find foods that he loves. It is a daily challenge, but, then again, so are many things in life. I look to my son as an inspiration when I fell sorry for myself and my diabetes.
    Best wishes to you and your family.

  3. Sarah
    Sarah November 28, 2007 at 7:42 am | | Reply

    P.S. I forgot to add that I lived the first 23 years of my life without Celiac and 25 years without food allergies (or at least I was asymptomatic). I could eat anything and everything, at least after MDI came into favor. Now I have Celiac and anaphylaxis to wheat and milk.

    Was it hard? Yes. Is it still? Yes? Do I sometimes miss “normal” foods and being to eat out or at a friends like a normal person? Yes. But I have become more accepting over time.

    Trust me, if she should be gf, the earlier you start her, the easier it will be for her.

  4. Rachel
    Rachel November 28, 2007 at 7:53 am | | Reply

    Immediately I thought, she’s still so young, she won’t know what she’s missing.

    And that’s what’s so hard, I suppose. Luckily, she has her mom around who deals with the same thing.

  5. Karen S.
    Karen S. November 28, 2007 at 8:11 am | | Reply

    Hey Amy,

    Well…it’s not positive that it’s celiac yet! However, if it is I can understand why you are upset and your thinking make sense but being healthy is better than being “normal”. LOL! If you want to define eating wheat as being normal. I’m not doing a good job of cheering you up here. I’m sorry if that is the case and believe you have every right to be bummed. However, we both know in the long run she’ll be fine…it will just take time to get used to the new situation. I do not have celiac but I can see how it would be another annoying disease to deal with (like diabetes isn’t annoying enough?) Anyway, my thoughts are with you and I know your daughter will be fine no matter what. Keep us updated.

  6. landileigh
    landileigh November 28, 2007 at 8:49 am | | Reply

    i went through all the stomach stuff like your daughter, did you run her through the food allergy tests? i have a casein allergy (milk protein) and eggs. both cause the same effects to me. the stomach cramping, diarrhea, etc.

    sounds like you have to do the elimination diet to figure out what might be the culprit.


  7. Journeywoman
    Journeywoman November 28, 2007 at 11:03 am | | Reply

    I am allergic to nuts, tomato, and all seafood–I have been since I was 2 years old. I was the weird kid with the food allergy and I had friends who were allergic to wheat.

    I lived with it. I made sure my friends could eat stuff. I hope your daughter is able to eat wheat, but if not she has a mom who understands. (by the way, merange cookies were my friends with a wheat allergy’s favorites…email me for the easy as anything recipie)

  8. David
    David November 28, 2007 at 11:06 am | | Reply

    I went on a gluten free diet a year ago and have type 1. In my case, the symptom was swollen lymph nodes. I feel much better now.

    I wouldn’t view it quite as narrowly as you describe though. I understand what it’s like to be the kid with the weird diet as I was diagnosed at age 7. But I find many interesting gluten free dishes at my local grocery store, which has continued to offer and increase it’s gluten free offerings.

    I made a gluten free pumpkin pie for thanksgiving. Just google gluten free pumpkin pie. There are lots of good resources out there, including spaghetti made from rice. See bob’s red mill for gluten free bread, cake, and cookie mixes. Also, pick up a copy of:

    It’s excellent.

    Good luck. I actually like my diet much better now. It was difficult at first, but that wears off after a while.

  9. Allison Blass
    Allison Blass November 28, 2007 at 2:25 pm | | Reply

    Well, I think everyone is kind of missing the point. I think Amy, who has it, and most people who do some research can discover tons of recipes that are tasty and healthy to eat. That’s not really the point. Kind of like diabetes, it’s not the reality of the disease that’s the problem, it’s the perception. The fact is, children could perceive it as being weird and parents could perceive it as troublesome. Just because something is possible doesn’t make it popular! That was the message I got from Amy’s post, and with that in mind, Amy, I’m so sorry and I hope you are able to find some good, kid-friendly alternatives. I also hope that it isn’t actually celiac and that she just had a stomach bug! ::hug::

  10. Patrick
    Patrick November 28, 2007 at 3:05 pm | | Reply

    Thanks for letting me know I missed the point. I appreciate that (note sarcasm).

    This is one of the reasons I rarely look at blogs (no offense, Amy). Written dialog misses much.

    Anyway, best of luck to you and your family. From my perspective, dealing with the health and well-being of one’s children is the toughest thing I ever do. You have my sympathy and empathy.

  11. RichW
    RichW November 28, 2007 at 6:22 pm | | Reply

    Life gluten free has to be so difficult. I couldn’t imagine having to deal with diabetes and celiac disease. I pray your daughter is okay.

  12. Chrissie in Belgium
    Chrissie in Belgium November 28, 2007 at 11:01 pm | | Reply

    So SORRY for this latest trouble you are having…… Life is often just one thing after the other. No one ever claims it should be easy. (((HUG)))

  13. Penny
    Penny November 29, 2007 at 6:09 am | | Reply


    I hope your daughter’s tummy feels better and she can start eating wheat again.

    One of my biggest fears is that Riley will develop celiacs also. I’ve often thought when kids have birthday parties at school that even though a cupcake is not good for anyone, at least he can eat it like all the rest of the kids. With celiacs that wouldn’t be the case.


  14. Brent
    Brent November 29, 2007 at 6:18 am | | Reply

    My daughter has both T1 and Celiac Disease. Although she has grown accustom to lifestyle, it’s still hard having parties at school and special functions without her feeling left out or different. Kids can be rude at times. I hope that everything works out.

  15. Allison Blass
    Allison Blass November 29, 2007 at 7:38 am | | Reply

    Message to Patrick:

    I’m sorry I offended you! I did not intend that. I was trying to discreetly refer to the couple of people that were just talking about recipes, and my thought was just that it wasn’t so much the food that was hard as children’s attitudes towards food… I re-read your comments and totally agree with you. :-) I suppose that’s what happens when you don’t want to single anyone out. You end up insulting everyone!


  16. Brad
    Brad November 29, 2007 at 7:52 am | | Reply

    I just can’t imagine having a child with both T1 and CD. God bless my mother and wife who deal with both diseases with me (38 years T1 and 18 years CD).

    It’s a good thing your doctor recognized the connection. Many are still resistant to go down the Celiac path. If your daughter’s troubles persist, strongly encourage your doctor to pursue some of the other diagnostic procedures.

  17. Patrick
    Patrick November 29, 2007 at 8:07 am | | Reply

    Note to Allison:

    Don’t worry…I’m overly sensitive and I should think before I write.

    Note to Amy:

    Let us know if you come down to LA…especially if you go to Disneyland again…we are season passholders and would love to see you guys again. My best to BT & the family

  18. Catherine
    Catherine November 29, 2007 at 9:38 am | | Reply

    Poor thing – this won’t be easy for her but at the minimum, at least you already know what is and isn’t gluten-free. It took a good year for me to really get a handle on it.

  19. Rosalind
    Rosalind November 29, 2007 at 1:44 pm | | Reply

    I’ve lived with autoimmune diseases that have left me temporarily blind, unable to raise my head from bed, raging high fevers, out of control bowel and bladder….I sound like a real sob story. But I don’t feel it. HOWEVER, when our daughter (age 12 developed a chronic illness, I was completely thrown. My world was up-ended and I felt more upset than I’d ever been. No doubt about it — it’s much harder to deal with anything that happens to your kid. My experience is that kids have enormous capacity to normalize anything — as long as they don’t fear it. We have to make it ok for us so we can make it ok for them.

  20. Scott K. Johnson
    Scott K. Johnson November 29, 2007 at 3:49 pm | | Reply

    Hey Amy,

    Just wanted to drop a quick note that I’m thinking of you and your family as you work through this.

  21. AmyT
    AmyT November 29, 2007 at 5:04 pm | | Reply

    You guys are the best. Thank you for all your well-wishes.

    And Allison: you nailed it. I’m definitely more concerned about the psychological and social burden than getting my hands on the GF foods and recipes for my daughter. Luckily, those are good supply at the moment. But the empathy of other children? Often lacking.

  22. Andrea
    Andrea December 2, 2007 at 7:47 pm | | Reply

    Wow, Amy, my heart goes out to you and to your daughter. I hope it is going well with re-introducing wheat into her diet. Certainly many of us in this community can understand what it is to be the kid that can’t have pizza or cupcakes with the rest of the class.

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    The Patient Connection December 3, 2007 at 12:54 pm | | Reply

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  24. Cesar
    Cesar December 5, 2007 at 11:11 am | | Reply

    My sis started having really bad stomach pains, her doc put her on a strict gluten free and lactose free diet. In the end she still has stomach pains but many specialists have told us is that many kids even adults have a harder time digesting certain food and it could easily be diagnosed as celiac. They get exactly what you described, stomach pains.

    I thought I should tell you.:)

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