6 Weeks On Cf Diet With No Changes

[cruelshoes]

My celiac son has been completely casein free since 1/15. His Neurologist asked that we put him on a CF diet to see if it helps with his small motor coordination disorder. I am scrutinizing everything that comes into the house and goes into his mouth. My son was OK with the gluten-free diet, but removing casein makes it much more restrictive.

We have seen absolutely no change in my son's coordination, behavior or moods. He is exactly the same kid he was before we started, only with a more restricted diet. He is frustrated. He said to me the other day "mom - this isn't helping me at all. I still can't write." I am frustrated because I knew it wasn't going to help. But I told the neurologist I would try it until our next appointment on 3/5.

This post has no point other than to say I'm not sure I can keep this up until 3/5. This sucks. Shouldn't I have seen some changes by now if there were going to be any???

[home-based-mom]

  cruelshoes said:

Shouldn't I have seen some changes by now if there were going to be any???

My totally uneducated guess is yes, you probably should have seen something by now if there were ever going to be anything to see.

Nevertheless, March 5 is only a week and a half away and you will then be able to tell the doctor that you did exactly as recommended.

And then get some ice cream on the way home!

[missy'smom]

Have you had him tested for dysgraphia?

[PixieChinchilla]

Believe me I know the feeling.

I've been gluten-free for four months and I'm still sick every, every day.

I know that I'm not slipping up, either. I've been VERY careful. OCD careful.

I drive everyone I know crazy with how careful I am.

I dont know what to tell you, because I'm ridiculously frustrated..

But sticking with it. I know people who didn't notice results for a full six months.

I just hope I'm one of them... :/

[Mango04]

Sorry, Colleen.

I don't know if you would be seeing changes already. I think you need to give it three months before you decide casein-free isn't worthwhile, but I know that might seem like too long.

[Darn210]

Colleen, don't know the answer . . . seems like you should have seen a difference . . . but this is just a note to cheer you on . . . you can do it and so can he. My son is counting down the last days of his gluten-free trial (and so am I).

[confusedks]

Colleen,

I agree with Mango. It's like gluten, it can take a while to detox the body of dairy...much longer than gluten.

When I went casein free, I didn't notice any really big changes, but when I tried milk chocolate once, I got a severe migraine the next day...so obviously it doesn't agree with me!

I'd stick it out a little bit longer to see if anything changes. For me, I guess I didn't even notice I got headaches until I took the dairy OUT of my diet.

[Green12]

Colleen, just wanted to give you my support.

I have heard it does take a while to clear out dairy and notice changes so it might be worth it to give it more time.

Whatever you decide best of luck

[cruelshoes]

  Mango04 said:

Sorry, Colleen.

I don't know if you would be seeing changes already. I think you need to give it three months before you decide casein-free isn't worthwhile, but I know that might seem like too long.

Really? 3 months? That seems like such a long time. Oh, well, if it does turn out to be 3 months at least we will be more than half way there.

  home_based_mom said:

And then get some ice cream on the way home!

Believe me, Ice cream is definitely on the agenda after our next appointment. I have been careful to tell my son, though, that we have to get the doctor's OK first. Not trying to promise that we will be back to dairy, just that we will talk to the doctor about it.

  missy said:

Have you had him tested for dysgraphia?

We had a learning disabilities assessment from the speech/language/learning center, and they didn't find any. The Neurologist seems to think that it is more of a physical problem than a learning disability. I originally went into this with the opinion that it was dysgraphia, but now I'm not so sure.

  Darn210 said:

Colleen, don't know the answer . . . seems like you should have seen a difference . . . but this is just a note to cheer you on . . . you can do it and so can he. My son is counting down the last days of his gluten-free trial (and so am I).

Have you seen any changes? I can't imagine hanging on for 6 months without seeing something. How is your son handling things?

Thanks for the support, everybody. I really didn't want to hear that it can take a long time to see results from removing dairy. I just got such a quick indication that things were working when I took gluten out of our diet that I hoped dairy would be the same. It's hard to keep up the momentum without seeing results. At least we only have 10 days until we see the doctor again. My husband says he is ready to give up now, but I made a commitment to the doctor that I would try it. I don't want to be one of those mothers that don't follow through with what the doctor says just becaue it's inconvenient and hard.

[Mango04]

  cruelshoes said:

Really? 3 months? That seems like such a long time. Oh, well, if it does turn out to be 3 months at least we will be more than half way there.

Six weeks seems like a long time, but I've been doing it for 12 years...tell your son to hang in there...he can do it. It would be worth it to stick it out for a while longer just to really make sure you're not missing out on a possible solution to his problem. I really think that with the neurological effects of these proteins, it takes months (not weeks) to see results.

[Fimac]

Hi Colleen,

Question - Did you replace the dairy with soy ?

My son has a motor speed processing disoder with a dysgraphia diagnosis.

When he came of dairy it made no diffrence to this problem. There were very noticible changes in other areas.

However when I took him of soy there was a significant change in his motor speed. Things have improved in that area, but he was in the 4% for speed. Handwriting is still bad, but now we have some writing.

Fiona

[Nancym]

  Fimac said:

Hi Colleen,

Question - Did you replace the dairy with soy ?

I'm glad you asked that, I was about to ask the same thing.

[cruelshoes]

  Fimac said:

Hi Colleen,

Question - Did you replace the dairy with soy ?

My son has a motor speed processing disoder with a dysgraphia diagnosis.

When he came of dairy it made no diffrence to this problem. There were very noticible changes in other areas.

However when I took him of soy there was a significant change in his motor speed. Things have improved in that area, but he was in the 4% for speed. Handwriting is still bad, but now we have some writing.

Fiona

We have introduced some soy cheese, but that's about it. We have been using rice or almond milk for drinking and cooking. I will definitely ask his neurologist about soy when we go back in for our appointment next week.

When you removed soy did you re-introduce dairy? I don't think I can deal with gluten, dairy AND soy. Losing dairy has been a tough pill to swallow. It feels like it has take away the last few shreds of normalcy we still had left. I guess if it comes down to that we will do it, but I'm sure going to whine about it!

[Fimac]

Hi Colleen,

When you removed soy did you re-introduce dairy? I don't think I can deal with gluten, dairy AND soy. Losing dairy has been a tough pill to swallow. It feels like it has take away the last few shreds of normalcy we still had left. I guess if it comes down to that we will do it, but I'm sure going to whine about it!

No, When I removed soy the dairy was still gone from his diet. He has lost it forever. Dairy causes inflammation in his colon. We removed dairy from his diet at the suggestion of his GI doc when she found a lot of inflammation during a colonoscopy. The procedure was repeated 3 months later and the inflammation was gone. However he had been lactose free since he was 4 1/2 years old and I was never very happy with dairy in his diet so his dairy was only lactose free milk at breakfast time.Not difficult to remove. Soy however was a major pain and it has taken 4 months until I have reached a point where I think I can cope with this. Doc's opionin about removing soy was "You can not do that he would have nothing to eat!"

When we removed dairy from his diet I did get feed back from his teacher. She had noticed changes in his behavoiur in the class room and was unaware of any changes to his diet. So I would talk to your sons teacher to see if she has noticed any diffrences in the classroom. Sometimes I find that ds will focus on the negative and not see the what he has gained because it was subtle and slow. Ds is 10 years old by the way.

However on a side note ds(12) has tried gluten-free/df/sf and it has made no diffrence to his tremor.

Would your son be helped by a laptop ? You could probably get a letter from the neurologist to say that the school should use adaptive technology. The school may even have to provide this for him. There is speech to text software and word predictive software that might help your son.

Fiona