Going Low-Gluten/Low Casein


Okay for starters let me first admit that I have read a lot about the GF/CF diets and had various thoughts about them. I don’t want to say I thought it was total BS but maybe partial BS or at least exaggerated. Like you stop giving your child wheat and they start talking if they were non verbal before seemed to be a bit of a stretch to me. That being said here is my story:

I have always been lactose intolerant and had irritable bowels. I just accepted that those were my issues and I just dealt with them the best that I could since no doctor ever really seemed to do anything helpful about it. I will admit once I did ask one of my son’s “autism specialists” about the diet because what would it hurt if it did make some improvement some way. What was explained was that it seems to work in some kids and not in others. It seemed that it was related to Celiac’s disease and I was asked then if there was any history of Celiac’s disease in the family and I said no. Perhaps I should have looked into it further at the time but perhaps it was one of those weeks where I was trying to get him to go to school or trying to convince the school to work with him instead of suspending him or making a big deal out of a minor behavior. Or I was inviting insurance company or well any number of things could have been my picked battle for the day or moment. Who knows, right??

So more recently I have had horrible pain in my lower left quadrant. I discussed it more here and by the way the plan for their survival without me failed. This was tested when I went to the Emergency Room for excruciating pain and was unable to do much for a few days. My son became unregulated & it has been hell ever since but we are starting to get that turned back around.

At the ER they did a CT scan that did not show anything. The pain was absolutely horrible and I was having nausea and indigestion. I would feel horrible when I ate. As my husband would tell you I live on pasta, crackers, pizza, cheese, fast food, especially when he isn’t here to cook for me. For the past few years I have been having to fend for myself more and more. With doing homeschool I was getting even more lazy with my food choices.

That weekend after the ER visit I ate fast food and I was so miserable i thought i was going to die. My husband commented that weekend that maybe it was all related. I just looked at him. He usually doesn’t connect dots, any dots, like I have to explain movies to him all the time and it drives me crazy. I love watching complicated movies and getting a twist in the end. He hates it. I almost knee jerk told him he didn’t know what he was talking about but it all clicked. Crap I started reading about Celiac’s disease and Gluten intolerance. I had known so many others talk about it on Twitter. I had for sure always known that I was lactose intolerant and that had been getting worse. I read about how eating gluten can make the lactose intolerance worse. Oh geez.

I decided right there and then I had to try it. I of course tweeted about it and since there are so many others faced with this issue I had all kinds of wonderful links and suggestions tweeted to me. So many wonderful suggestions like SoDelicious coconut milk “ice cream”. I seriously wish I had looked into this years ago. I am a really picky eater and I promise to put up more information of the alternatives I am using in upcoming posts because I am guessing it will help others.

I was tested for Celiac’s disease right around the time I started the diet and the blood work was negative. But that to me means that if I have some gluten it is okay. They seriously need to fix the whole Gluten free labeling issue. I mean is it really that hard- Gluten free means completely gluten free, certified. Have another rating of trace gluten if think gluten free but not certified (potential cross contamination). Maybe a low gluten label for something where it isn’t a main ingredient but maybe barley is used in coloring or something. (I have been learning a lot very quickly!!) For example recently Dominos advertised Gluten Free pizza but then the small print made it clear they couldn’t guarantee. Someone with Celiac’s disease can’t eat that because they can’t have Gluten at all. I could eat it and be okay. It needs to be easier for people to know what is gluten free. Although I am aware it used to be worse.

I am still tweaking my diet but I do feel much better. I can see where I was crabby when my stomach was so upset and possibly I am less irritable now. But I don’t think I am a whole new person or anything. I still have sensory issues, not a fan of people and get irritated with stupidity. So not sure it completely changes an autistic. Although I know in my house we don’t deal well with being uncomfortable. So I can see how someone extremely uncomfortable becoming comfortable could clearly affect their behavior especially if that someone had not been able to communicate their discomfort. And not being able to communicate just makes someone even more frustrated. So many ways they could be doing effective research…

Anyways I still have some abdominal pain but it is tolerable. I was seen today by a surgeon and I do have a hernia. It currently doesn’t need surgery and we are going to wait and see how I feel and if it gets worse. I suppose it makes sense that getting rid of the indigestion issues and bloating decreased the pressure and pain.

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Comments

  1. This is really great information – I’ll be interested in hearing what foods you’re finding taste good. We take our guy to the dr. on Friday & really need to get the gut thing figured out. Hope you continue feeling better!

  2. jessymum says:

    I’ve been GF/CF for just 10 days now 🙂 … so I’m pretty new to this journey too. I too started mainly for reasons of abdominal pain/ digestive issues and also anxiety / depression / Asperger issues too. I have done quite a bit of reading and I got the impression that I would get the BEST results IF I went TOTALLY GF/CF at least for a while – somewhere between 4 – 6 weeks? and THEN did some challenges. My understanding was that if I just cut down my gluten / casein then I should only expect to see MINOR improvements – and that if I wanted answers ‘once and for all’ it was worth doing the diet strictly – no cheating. I have ALSO gone coffee, chocolate and peanut free. (I understand that SOME people who react to Gluten also react in a similar way to one of the proteins in coffee) Anyway – my plan is to be strict for at least 4 weeks then start some ‘challenges’ – my first will likely be lactose free milk (that way I can sort out if I react to JUST the lactose in milk OR if it’s the casein) … and if that works – then normal milk, After that probably decaf coffee (no milk) to see if my problems are with the coffee protein OR the caffeine, then ‘normal’ coffee (no milk) … etc etc… and eventually – I will get on to gluten. I really do hope that either do NOT react to gluten or else I react only to a certain quantity – so that I do not have to be so RIDICULOUSLY careful about what I eat in the long run. I wish you luck on this journey and will be eagerly following your blog to see what happens 🙂

    • Wow coffee? I am trying to process all the great information you have provided but fixated on coffee. Hmm I think I read similar info about being strict but since I had blood test I figured okay. But it makes complete sense to be strict for a period of time. Think I will work towards being strict. Working out a lot of alternatives and luckily my husband is very supportive.

      Gave up chocolate because most has milk in it. Okay i snuck a brownie which is bad all around. I really am not good at this.

      But coffee, shudder! I bow down to your awesome strength!

  3. karenaspergersmom says:

    Glad you are feeling better…great info. Thank you for sharing.

  4. excuse my poor typing-my internet is down and im checking my msgs from my phone when this post caught my eye. my son since bith has had serious intestinal distress. it started with colic, proceeded to lactose intolerance, then to ibs, then to gerd, then to “well diarrhea is his normal” to quote his doc. one of our sons therapists recommended gf/cf and to be honest we kind of thought it bs ourselves-im all about show me in research based terms what works and the jury is still out research wise on gf/cf. but we tried it-we are casein free limited gluten and for our son its a world of difference. between diet changes, his meds (prevacid, carafate. and apriso) we have seen significant behavioral changes. my friend who is NT but has gluten i.tolerance describes her changes as having less achiness, fatigue, and feeling less miserable. for our son this translates into better daily activity levels, better,mood, better concentration, and less serious sleep disturbances. its interesting the difference it has,made for our son. have u tried almond milk for cooking? its our new go to. im not casein sensitive but i find using the almond milk for replacing regular milk in cooking to be better tban regular milk. food is less heavy.

    • I hope to start my son on the diet or at least partially over the summer. I hope it would help with his fatigue & overall make him feel better.

  5. quirkyandlaughing says:

    We’re gluten free in our house, too! Actually, I found out my son & I have wheat & dairy allergies (among many other allergies) around the time I learned about the Asperger’s, so I fortunately didn’t have to make any decisions – the decision was made for me. Like you, I was skeptical & it’s SO MUCH WORK that I didn’t want to do it if I didn’t have to. Within 4 days, my son started eating vegetables. And out of of nowhere, he said, “Oh my gosh! My stomach doesn’t hurt.” About a week later, I realized my stomach didn’t hurt either. It’s amazing what you get used to living with.

    Good luck on your gluten free/dairy free adventures! I, too, am a big fan of coconut ice cream. And coconut coffee creamer. I am also a big fan of ghee. Where, or where would I be without ghee? LOL.

  6. We are veterans of the GF/CF diet. We tried it for a year to see is it helped Tyoma, or me since I had issues with depression/anxiety. I truly believe that it helps some people, but for us, it was just expensive.

    Tyoma has always had good/bad spells on or off the diet and so have I. I kept data. I was patient since sometimes the benefits come months after starting. After about a year we added pancakes to our diet (vacation, nothing else to eat). No one regressed, in fact after returning gluten and dairy Tyoma and I went through a long good spell.

    Yet, my Dad is on the GF/CS diet and swears by it. It helps him feel better and keep his gout under control. My mom takes the data, and I trust her compulsive observation skills.

    I hope that you find some relief and that you find long term wellness. I’ll be eager to hear how it goes! 🙂

    Lori

    • jessymum says:

      It ‘s hard to work out who the GF/CF diet might help. I figure it’s worth a try – in my case I figure if it doesn’t help then I haven’t really lost much (except perhaps a few kilos 🙂 ) … just wondering – did you or Tyoma have much in the way of food cravings / habits ? … I’ve been a bit of a carb (particularly wheat cereal, bread and pasta) a-holic for YEARS now … probably always actually – I am thinking / hoping that maybe this is indicative of a problem? (but for now we wait and see)

  7. Quiet Contemplation says:

    I’m glad you were able to find something to help! I am lactose intolerant and 2 out of 3 of my kids were allergic to milk as infants, but did outgrow it when I reintroduced it at the age of 5, as recommended by the doctor. Thank God, because it was very difficult not being able to have any milk (even trace amounts like whey) in our meals. My daughter and I still only ingest small amounts of milk products at a time, or else it gives us issues. Me, more than her. I have also gotten rid of about 70% of the processed food in our house, whicg was primarily white wheat products, and I have to say that I am certainly feeling better for it. Keep us posted on how your new diet change is going!

  8. I glad it is working for you! I hope the tweaking goes smoothly as well. 🙂

    “I still have sensory issues, not a fan of people and get irritated with stupidity.”

    Me too! (I do like certain people though. 🙂 ) I don’t think eliminating anymore gluten from my diet would help that. Lol!

    Daniel has been gluten-free for several years now. He is 100% gluten-free. He and I cannot drink cows milk, but he can eat yogurt and certain types of cheese in small amounts. (Yogurt upsets my stomach, but cheese does not. Strange.) When I switched Daniel to this diet he did started to gain verbal skills and has progressed ever since. His meltdowns also lessened as well. I am on a mostly gluten-free diet. I can have limited amounts of wheat products, but they have to be from specific manufactures.

    If I have too much I have stomach problems, increased anxiety, that can lead me into depressive moments and lack of sleep. Of course, they all play off of each other. I noticed a huge difference in myself and the others when I started to limit the gluten. The other two can have gluten, but if they have too much they too will become moody, have crying spurts, and anxiety.

    I never would have thought it to be true, but I did my own home experiments on me and the kids just to be sure it wasn’t placebo. Sure enough for us it has made a positive difference, especially for Daniel.

    I hope it continues to benefit you!

  9. Aurelio Gibeau says:

    Casein also contains lots of calcium and magnesium. When doing bodybuilding, i prefer to use casein as a protein source compared to whey protein. ‘`:”:

    Kind regards http://www.healthmedicinelab.com“>

Trackbacks

  1. […] yes the diet. I have thrown out the GF/CF diet because I just couldn’t deal with THAT many restrictions. I am not eating any fried […]

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