Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

GFCF Dilemma

with 24 comments

We have been (kind of) doing the GFCF diet for six months now.  We’re actually very strict about no gluten or dairy products, but the GFCF diet also eliminates soy, and we don’t do that.  Both the kids patch tested allergic to wheat, milk, and eggs.  Pudding also tested allergic or intolerant to several other foods, which have been successfully reintroduced back into her diet, with the exception of peanut and cashew nuts which we won’t do for a while.  At the last appointment with the dietitian, she asked how I felt about reintroducing the rest of the foods.  And I didn’t, and still don’t know how I feel about it.

When we first removed gluten, Pudding immediately slept better.  But over time, her sleep issues have returned, though they aren’t as bad as before.  And she has made improvements with her development over the last 6 months, but they have been gradual rather than dramatic, and I honestly can’t say that those changes are due to the GFCF diet, or her school program or other therapies.  I just don’t know.  When I’ve read other parental accounts of using the diet, they have always claimed dramatic differences.  The GFCF diet is supposed to be followed for at least a year, so part of me thinks I should keep going.  The more skeptical side of me says that if we haven’t seen sufficient changes on six months, it is not valid as a therapy.

I haven’t thought about stopping the GFCF diet, because it is fairly easy for us to follow.  Now that we have reintroduced rice and potatoes, the range of foods she can eat has increased greatly.  We can go out for a meal again- something that Pudding loves to do (I know, she is atypically atypical in that respect).  If we reintroduced the other foods, it would be even easier.  Pudding could go back to eating her beloved pepperoni pizza and ice cream.  She could play with regular play-doh, and share snacks at school.  I wouldn’t be so concerned about her eating something when she is out of my care.  Our food budget would be at least halved, which is no small thing at the moment.  She could eat a real birthday cake without me having to figure out how to get all the ingredients while away from home.

And then I go back to remembering how her back looked when I removed the skin patches.  How I thought she had no problems with food, and then saw the angry red wheals.  How even after the 5 days of observation, the marks for wheat and milk remained.  They didn’t go away until 3 weeks later.  I remember thinking that if this is what happened to her skin on the outside, what on earth had years of eating these foods done inside?  The scariest thought of all: was she in pain all this time, and unable to tell me?

And with that, it seems certain that we’ll carry on.  But if following the GFCF diet can be tough here in the land of Whole Foods and Trader Joes, how much more difficult will it be overseas?  And right now we have a pediatric allergy specialist, dietitian, and GI consultant.  If I’m going to reintroduce those foods, I want that team at close hand.  We leave here next summer, so a decision needs to be made fairly promptly.

I would really appreciate it if anyone with experience of the GFCF diet could tell me what convinces you to keep doing it.  Or if you tried, but stopped, you could tell me about that too.  Even if you’re shy about leaving comments for everyone to see, you can drop me an email.  I really need your help on this one.  I’m at a loss.  We see the allergy doctor on Friday, and need to make some kind of decision for both kids.  I’m just not convinced either way.

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24 Responses

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  1. I think that the important point to think about is that obviously Pudding does have an allergy to wheat and milk. Now with all allergies your body may be able to tolerate small amounts of the allergen but a lot is very bad for you.Also there may not really be any pain but it does inhibit their growth, ability to focus and may add to their anxiety. We tried a modified gluten free diet without getting tested. There really was no change but it also isn’t effective for most people.But honestly if it had had the desired effect we would have continued it forever.

    Elise

    November 16, 2010 at 7:32 am

    • Weirdly, the one thing that has never been affected is her physical growth. She has always been 90th percentile plus for height, and always above 75th percentile for weight. Whether she was eating allergic foods all the time, or on an incredible restricted diet. I don’t know about focus and anxiety, because their honestly could be several contributing factors. She has improved, but not the dramatic changes I’ve frequently read about.

      Spectrummy Mummy

      November 16, 2010 at 8:42 am

  2. I’ve wanted to try the GFCF diet for my son, but we already eliminate corn products from his diet (which is in just about everything) so eliminating GFCF would mean he would eat next to nothing. I know how hard and expensive it is to do an elimination diet. Our bread is twice the price, our juices cost more…I know how hard it is to keep up when we go out and travel as well. But I also know when he eats something that bothers him, we all pay for it (behaviorally and physically) for days.
    I’m not sure there’s a good answer for you. I am sure I can’t help 🙂

    akbutler

    November 16, 2010 at 7:44 am

    • I was convinced corn was something Pudding had a problem with, and I hate HFCS being in everything here, but we tested and she was fine for that. It does help to know that you do see changes that are attributable to his diet.

      Spectrummy Mummy

      November 16, 2010 at 8:44 am

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  4. We do GF/Soy, because Julia is Celiac, and Coleman and I are intolerant. I tried the CF piece, and was able to determine that it didn’t make a difference for them. I’m lactose intolerant so I don’t eat dairy, but I don’t try to eliminate all the hidden CF. It IS hard and expensive, and I don’t know how I would do it overseas. For us, GF/Soy isn’t optional. We get sick. It’s behavioral, but also quite physical. I can’t say what I’d do in your shoes. Sorry I’m afraid I’m not much help either. Good luck!

    Laura

    November 16, 2010 at 8:31 am

    • We tested her, but she was already gluten-free, so we aren’t sure if she is Celiac or not. It is in the family on the husband’s side, and other food allergies on my side. She was never physically sick, but does appear to have some mild digestive issues. I just don’t know!

      Spectrummy Mummy

      November 16, 2010 at 8:46 am

  5. When our daughter was 2 1/2, we started the GFCF diet after reading about the miraculous effects it had on other children with autism. I was hesitant for a while due to complication, controversy and because her regular diet was already so limited, I was afraid a GFCF diet would limit it even more.

    Within a week of starting the diet, her speech dramatically improved. It was amazing! But after that initial burst of progression, the effects weren’t as noticeable. It did very little for her medical challenges and almost nothing for her inability to sleep well. Her behavior (crying a lot through the day) didn’t change much either.

    She was getting some early intervention therapy (OT) and as we came closer to her third birthday (after she’d been on the diet six months), we started to consider stopping the diet. It was expensive, what she would eat was narrowed down to practically nothing and I was getting a lot of negative challenge from the therapists regarding her diet and nutrition. We were about to start seeing a variety of medical specialists for the problems that had existed long before we started the GFCF diet but noticed people were all too willing to blame the issues on the diet rather than looking at the real problems. Since it didn’t seem to be making much of a difference, and in some ways actually hurting by limiting her diet to such an extreme, we chose to stop. We saw no difference in behavior, sleep, etc after stopping the diet, but we moved a few months later and she lost most of her language again. I think it was more due to the change than it was to the diet which she seemed to hate.

    So the positive was that it seemed to jump start something in her language or her ability to express herself but there were more negative effects than helpful, so we chose to stop. So, that was our experience.

    I will add that about a year ago, I started a gluten free diet for myself due to symptoms that made me suspect a gluten intolerance. I felt SO much better. (I’ve been tested for celiac and it was negative.) Every time I think it’s no big deal and inhale a delicious cookie, I pay for it later. So, given your daughter’s allergies, I would go slowly re-introducing gluten or whatever other allergen, doing one at a time to see if you notice medical or behavioral changes with each reintroduction. I’m sure you know all about that, but when you mentioned concern about your daughter being unable to tell you about pain she’s feeling, I think it is possible for the allergy to exist and to think it’s normal to feel bad after eating something you’re allergic or intolerant to, so I would watch for any sign she might be feeling bad. If you’re going to stop, I would definitely try it before you move away from all the medical support you have so you can have a game plan when you move overseas if re-introducing gluten/casein seems to make things worse.

    Laura

    November 16, 2010 at 11:18 am

    • Thank you! This is the kind of thing I was looking for. I’ve read lots of accounts about the dramatic initial changes, but the same people never follow up with what is happening a year later. My gut reaction is to retest these three before reintroducing to see if the allergies appear as bad as before. The doctors themselves all want to reintroduce the foods, so it might be wiser to go with their opinion on this.
      It is funny you mention losing language as a result of moving, as I’ve associated the stress of moving (and gaining a baby brother) as the cause of Pudding’s anxiety. Thank you for your comment 😉

      Spectrummy Mummy

      November 16, 2010 at 11:51 am

  6. If you want to do a celiac test without being GF, go through Enterolab – they do a stool test, and you don’t have to be eating gluten to do it.

    I agree with the first poster about her allergies – usually if something shows up on a RAST-type test, it is a stronger type of allergy.

    C has been GF/CF since he was 12 months old because of positive rast tests at that time. After that, we stuck with it because he clearly had some GI stuff going on. Now I keep him on it because it I’m sure his belly probably can’t handle those tough to digest proteins (that being said, he does eat corn).

    I also keep him on it because I am gluten and dairy reactive myself, and we seem to be cut of the same cloth. And really, our bodies aren’t meant to digest cow’s milk – or really even wheat at the amount we eat it.

    I don’t know where you are headed overseas, but if it’s Europe, you’re in luck because they are super gluten aware.

    I wish I had some good suggestions for you…I agree that if you haven’t seen dramatic results you probably won’t. But just because it’s not dramatic doesn’t mean it’s not helping her if she is reacting in a way you can’t see.

    It’s a tough call…not sure what I would do in your shoes…hopefully you’ll have some great moment of insight that will help make the decision clear for you!

    asdmommy

    November 16, 2010 at 11:50 am

    • The wheat, milk and eggs did not show up on RAST testing, just skin patches.
      It is a tough call. She can tell me if she has hurt herself when she has fallen down, or if she has something in her eye, but I don’t know about internally. I think the only way we’ll know is to actually try her, and watch like hawks.
      Now, is there any chance these Enterolab people take our insurance?
      Sadly not Europe. If only we’d figured all this stuff out while we were there! Oh well.
      I don’t seem to get many great moments of insight these days, I think I’m not getting enough REM sleep for that. I can hope though.
      Thanks for your comment- I’m going to check out Enterolab now. 🙂

      Spectrummy Mummy

      November 16, 2010 at 11:58 am

  7. It’s super hard. We had one daughter that responded a ton to leaving out gluten. It was funny though, after it had been awhile, we started feeling like it really wasn’t a huge difference and that going gluten/wheat free was just too hard. (We have been dairy free for years cause the other kids have dairy allergies.) She got a bunch of wheat though when we were traveling and we suddenly remembered why we were wheat free. We all feel generally better though off wheat and dairy. Maybe because we don’t eat much processed junk in general now. Best of luck deciding.

    Becky

    November 16, 2010 at 11:56 am

    • I do think I’d try to get it figured out before I left the US though. We were just in Mexico and still had to medevac.

      Becky

      November 16, 2010 at 11:57 am

      • If you decide to keep up the gluten free dairy free overseas, let me know. I can send some ideas for tools for making your own fours, etc.

        Becky

        November 16, 2010 at 12:02 pm

      • I cannot conceive of moving my kids to a foreign land and then having to medevac. What a nightmare! I guess we’re pushing on with their recommendations while we’re here.

        Spectrummy Mummy

        November 16, 2010 at 12:04 pm

    • Maybe in small/trace amounts it is okay? We’d definitely be cautious about reintroducing, and we do have time. I mean, we don’t even have an official assignment yet, so we might have lots of time for all I know. Here is the other thing, she ate really well before this, with just the odd junk treat. We were all organic, and now we can’t afford to do that. And her reinforcers in her ABA progra, at school are nasty HFCS candy. Not sure which is worse!

      Spectrummy Mummy

      November 16, 2010 at 12:02 pm

  8. Hi. We did GF/CF/SF and a number of other “frees” for about year with my ASD daughter Charlotte. (Via IgG blood testing, she was sensitive to 29 different foods, none via RAST testing). Initially we felt like we saw positive responses to the diet and then not so much. Over time we tried out probiotics and enzymes and saw positive changes with those as well.

    As we were approaching First Grade (and the need to pack lunches) and the impending birth of our 3rd child, I wanted to find out for sure if the diet was necessary (because it is so much work) So we got a recommendation for an Autism-friendly GI doctor at our Children’s hospital. Prior to doing an endoscopy to check for any internal allergies, we put her back on all the foods – no regression, no negative response. Endoscopy was clear and the GI doc said he didn’t see any reason to continue to the special diet. That was 4 months ago and she’s still doing great. I think she had some kind of problem with her gut and some combination of elimination and the probiotics helped to heal it.

    Good luck with your decision, and I think it’s always wise to revisit things and check in with whether they are still necessary.

    I blogged about it at the time. http://goodfountain.wordpress.com/2010/07/25/feels-like-freedom/

    goodfountain

    November 16, 2010 at 1:09 pm

    • Thank you, thank you, thank you! It is so much work. I even say to my husband that I can deal with the Asperger’s, but the allergies are just too much. And I have Might I ask which probiotics you used? I’ve been badly on-again-off-again with them, and I think getting a stronger gut might be the way to go before proceeding.

      Spectrummy Mummy

      November 16, 2010 at 1:19 pm

      • We used a broad strain probiotic from New Beginnings (an online company) and also used Culturelle brand which you can buy just about anywhere.

        Charlotte had a really bad rash on her body for a long, long time which the food elimination never fully got rid of (although it did help but not enough). The probiotics are what finally did the trick to getting rid of the rash. The belly rash happens now and again for a short period but usually goes away quickly. If it starts to persist again, I’ll put her back on probiotics.

        goodfountain

        November 16, 2010 at 1:43 pm

  9. For the longest time I’ve been wanting to tell you about GAPS, and your question about GFCF set the stage for me to do so. Healing is happening on the Gut and Psychology Syndrome protocol; healing of very severe autism. It’s also a good protocol for related issues, such as ADHD, BiPolar, and even Schizophrenia. It’s amazing what happens to personality and cognition when the gut is healed — 80% of our immune systems reside in the gut, and it’s even called “the second brain.”

    I have been diagnosed with Asperger’s Syndrome at the age of 70! After following the GAPS protocol for about 6 months, I can see big differences in how my body functions. Sensory issues are resolving, social ease is improving, and I feel *good.*

    If you’re interested in more information, googling “GAPS diet” will give a bazillion hits. And here are some links that you might find helpful:
    http://www.gaps.me/ Natasha Campbell-McBride, author of GAPS, an MD and nutritionist, and healer of her son’s autism
    http://health.groups.yahoo.com/group/GAPShelp/ bar none, the most helpful, accepting, loving group I’ve ever been in, and I’ve been on the internet since the early 80s….
    http://www.lifeisapalindrome.com/ <–a mom who blogs about her family's experiences with GAPS, SCD, Body Ecology, and more. She has just come from attending the WAPF conference this past weekend, and has posted extensive notes both on her blog and on the GAPShelp group. Ask for a password to her blog (she protects her family's privacy from the general public this way) and see if her science-based comments ring true for what you're experiencing. BTW, she's a lifelong vegetarian from a family of vegetarians, and has been completely won over to eating as our ancestors did, with 4 food groups: fats, meats, nonstarchy veggies, and ferments. Oh, and her profession is gourmet chef — you'll find some excellent recipes on her blog.

    The research and information cited at http://www.westonaprice.org/ convinced me to eschew vegetarianism, gave me a background from which to evaluate the various protocols, and changed my life profoundly.

    And for information from the WAPF Conference of this past weekend: http://www.fleetwoodonsite.com/index.php?cPath=40_274

    Well, I've preached quite a soapbox sermon here, haven't I? I wish you well in your journey in healing.

    Sage~~

    Sage

    November 16, 2010 at 9:43 pm

    • Well, here I am replying to myself
      This post http://health.groups.yahoo.com/group/GAPShelp/message/73759 just came through the list — it gives a Mom’s details about how GAPS has helped her son, and her whole family….
      I hope you join the group even if just to read this message!
      S~~

      Sage

      November 16, 2010 at 10:29 pm

    • Hi Sage,

      I’m definitely going to mention this to Pudding’s medical team when we meet. Thank you for giving me an update- I was wondering how you were getting on with this.

      Spectrummy Mummy

      November 17, 2010 at 11:21 am

  10. My middle child has been off dairy for nearly 5 years at this point. We found out she had a problem with dairy at age 2, although it took us another couple years and a doctor change to be able to officially call it an allergy. We are hoping that she’ll outgrow it. Two years ago, she actually didn’t get a welt from the patch test. We reintroduced dairy and suddenly her behavior was out of control again, so we took her back off it. I’ve promised her that we’re going to do another dairy challenge during the 2 week holiday coming up – starting with a pizza party on her birthday! Wish us luck. In the past it has seemed to take about a week to really be able to say “this is from the dairy, not from being tired or sick or excited or…”, and then another week for it to really be out of her system.

    In our case, it’s not directly life-threatening which is a blessing. It is, however, indirectly life-threatening when she’s so dazed she walks into a busy street. She also got hyper, aggressive and violent.

    I’ve just found your blog recently, so I don’t know much about your or Pudding’s situation. But I’d like to offer this bit of advice as a person who moved a lot as a child. At least consider continuing the diet that she’s used to through the move, to give her a little more continuity during a really stressful time. That may also give you a chance to figure out just how easy/difficult finding appropriate foods is in your new location. And then perhaps you’ll be better able to figure out what works for you all. Best of luck!

    Sandy Cannady

    November 19, 2010 at 5:41 pm


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