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SCD Recovery Story


Son #1 - NT but a few autistic-type quirks. Maybe very mild Aspergers. He is 12 and quite short and thin. He has difficulty with concentration and memory. He bumps his head and has lots of environmental allergies. He has horrible breathe which the doctor says is probably from bacteria in his digestive system. He has been on 2 rounds of ALA only which has resulted in his bumping his head more which he says helps his ears stop from ringing.

Daughter - NT, 10 and no odd behaviours. She is a bit overweight so I am hoping a healthier diet would help that. Her last physical showed she had high cholesterol. As she nears her teens I know weight will could be a problem. It is also a concern since diabetes runs in the family.

Son #2 - autistic & celiac- He is 4-1/2. He has been GFCF for 1 year, GFCFSF for ~6 months and now GF only with enzymes since March. Diet eliminated most of his behaviours but he did not start imitating and pretending until the introduction of enzymes. He says a few words but is inconsistent. He has had 8 rounds of ALA only which has increased his desire to talk, made him more social (he now has a friend), and eliminated his fears. No matter what dietary changes I have tried (low phenol, yeast, allergy testing etc) he never had a solid stool until I started him on zinc. Regardless, it is not consistent.

Son #3 - celiac - He is 2-1/2. He has been GF since 10 months of age. He has no problem with dairy but it is a minor part of his diet (only yogurt, cheese and butter). He has no behavioural problems (other than those of a typical 2 year old) and is developing beyond his age level. Regardless, his stools are not consistent. He also is quite small due to his not gaining weight from 3 - 10 months of age.

Myself - I have no GI problems but I have read many moms that have gone on the SCD lose weight quickly. I could stand to lose about 30 lbs. I also look forward to having the whole family on the same diet instead of fixing different meals and worrying about cross-contamination.

I am hoping this diet will benefit the whole family.

First Update

Our family has now been on the SCD intro diet for 2 days (today is the 3rd). The intro diet consists of chicken soup (chicken, broth, carrots, and egg cut in strips like noodles), ground beef patties, eggs, gelatin (fruit juice, gelatin & honey), turkey and bananas. So far I am seeing some interesting results:

Son #1 (age 12 - NT) He has had a headache off and on the last 2 days. He is also more clumsy than usual. This is the same reaction he had when we went gluten-free for 8 weeks the beginning of the year. I have since had him tested for celiac and diabetes but the tests came back negative. I have read that yeast die-off can cause headaches so I wonder if this is what is happening. He is fairly thin but he lost 1 lb even though he has been eating lots of the allowed foods.

Daughter (age 10 - NT) The first day was really hard for her. She is a bit overweight and is constantly hungry. She was literally crying the first day about how mean I am and how she will die without chocolate and sugar. The second day she was in a better mood about it. That night I gave her a couple SCD cookbooks to look through, telling her to pick some recipes she would like me to make once we are done with the intro diet. This really helped improve her attitude. This morning she woke up with yeast die off symptoms. I only had her on this diet since the whole family went on it. I had no idea yeast may be an issue for her too. Her mood lifted when she weighed herself. She lost 4 lbs in 2 days! She told me this morning that when we are able to go off the diet she would like to keep eating the same foods and only eat regular food if we go out to eat or if she goes to a party. Another change is her appetite. Usually when she eats the portion of food I give her she complains she is still hungry. This morning she ate 1 egg and 1 piece of bacon. I had made some bread (using almond flour) and asked her if she wanted some. She said she is full! She said she finds she is no longer craving food all day.

Son #2 (age 4 - autistic & celiac) He was not too happy the first day. I sent gelatin for his snack and chicken soup for lunch at school. They said he acted like he was afraid of the gelatin and when they gave him the soup he dumped it all out by trying to pour it back into his thermos. When he got home he ate a couple bananas and was fine. For dinner I gave him banana pancakes consisting of 1 banana mashed with one egg (no syrup). He loved them. The next day was better food-wise. I sent a banana for snack and scrambled eggs for lunch which he ate. When I picked him up from school, the therapist was a substitute so I could not get a feel for if he was any different but I was surprised by what I observed. When he waits for me to come pick him up, he is almost always on a swing. Yesterday when I went to pick him up he was sitting in the sand with a toy shovel. He was actually shoveling sand and putting it into the back of a toy dump truck. Appropriate play! When the therapist said bye he actually waved. I have only twice seen him do this. When I got home I was in the kitchen when I heard a voice say "mama". I turned around and he was signing "more" while saying "ba" over and over. He was looking at a banana on the counter. He has never requested anything by attempting to say it unless we are withholding it and repeating "say banana" over and over. How exciting. This morning when he left for school he waved bye to his dad. His stools are a bit more formed and are very dark - almost black. The quantity appears to be much more than what he is eating. He woke up with a wet diaper which is unlike him so maybe the yeasties are dying off for him too.

Son #3 (age 2 - NT & celiac) This little one is a real trouper. He has been so willing to try whatever I give him. He does not like chewy foods so he would not eat the chicken, turkey or ground beef. Last night he tried the carrots out of the soup and loved them. I could not get him to eat carrots in the past. He is underweight yet lost 1 lb. I am not too concerned because he has been eating well. He also had a wet diaper this morning so maybe we all are losing water the body has been retaining. His stools are more formed but have black sand-like specs. I assume this is yeast die-off.

Myself - I have lost 2 lbs. in the last 2 days! I have been more tired but I assume this is from staying up until 2 am so I can cook the next day's food. I work full-time so making food from scratch is a challenge. This morning my 10 yr old daughter told me it is time I teach her to cook so she can help us be able to do the diet. I think I will take her up on it.

Overall I have found that the introductory diet for the first 2 days is really beneficial not only for healing but to prepare for success on the diet. When everyone was restricted to a few foods, they were thrilled with the added items. If they had not been deprived of those foods, the allowed foods would not have been so attractive.

Also I find that in a short time, taste buds have adjusted. Before Thanksgiving I bought some SCD legal cookies. I let everyone try one. My oldest son ate it but said he didn't really like it. My daughter took a bite and spit it out in the trash. My two youngest tried a little and would not eat the rest. I had one and it tasted alright but was not interested in having any more. This morning I offered everyone a cookie again. My 2 older kids said they were good. My daughter wondered why she didn't like them before. My 2 younger kids ate one and begged for more. I ate one and really liked it. This was the same package of cookies. Does 2 days off refined sugar really make such a difference so quickly?

Second Update

We have been on the SCD diet for over a month now. I waited until today to send an update since I knew I had my monthly meeting as my son's school and wanted to include their feedback in my post. This diet has been hard for me since I work full-time and it is very time consuming. Regardless, the benefits I am seeing is definitely worth it. We did decide to go off the diet for a couple meals for Christmas for the non-autistic/celiac members of the family which we regretted. It really made us aware though how it benefits us all. Here is an update per family member:

Son #1 (age 12 - NT) His headaches went away and he is not as clumsy though he has a nasty ear infection which is affecting his sense of balance. I had not noticed his bad breathe since starting the diet but when he went off the diet for the 2 days it came back again.

Daughter (age 10 - NT) She has continued to lose weight and is really looking good. I had to take her clothes shopping because nothing fit her anymore. She was so excited to be able to wear styles she never could before and to find clothes in her favorite stores that would not fit her before. She has lost 11 lbs in 1 month. She also told me after about 2 weeks on the diet that her memory has noticably improved. She said before she would have to read her lessons 2-3 times before she would understand the material but now she only has to read it once and gets an A on her tests.

Son #2 (age 4-1/2 - autistic & celiac) Diarrhea is now a thing of the past. He has had solid stools since the diet started. When I went to do laundry for the first time after starting the diet I realized how wonderful it was that he did not have a single pair of soiled pants (he used to go through 1-2 pairs of pants per day). He is having terrible diaper rash though - to the point of bleeding. I believe it is due to pineapple which I now have taken out of his diet and is improving. He is eating more and more variety of foods. His new favorite food is carrots! For 2 years on the GFCF diet I could never get him to eat carrots. He is also willingly eating zucchini, broccoli and yellow squash. He is doing more signing and is attempting words more often. On occasion he is actually using whole words (as opposed to the beginning sound). He is waving bye consistently and from time to time is actually saying bye. He also has decided to start doing things he has always seen me or another family member doing. When his little brother started putting away his toys, he found a bag and without my asking put his toys away in a bag too. He is doing this pretty consistently. After I change his diaper he took it upon himself to fold the pad up, put it away and put the wipes box away. After a meal, instead of running off to his room, he decided he wants to put his plate in the sink and his cup in the fridge. Over the last few months he has been taking more interest in his brother but now he is much more comfortable around him and taking an interest in being with him. The other day I was changing his brother's diaper and he stood next to me while I did it. Once I was done he reached his hand down and pulled his brother up to a standing position. Then he proceeded to hug and kiss him! He is sharing toys with him too. Today I had a monthly meeting at his school with his teacher, 1:1 aide, speech therapist and ABA therapist. They said he is doing "phenomenal". They said they are so excited about the diet. They said they believe I found the answer for him and begged me to keep it up. They said they saw more improvement in this last week than they have the whole year. They need to redo his plan because of his new improvement. They said the main area is his attention span. Before they could only keep his interest for 2-3 minutes. Now he will work on something for about 20 minutes. They said he is vocalizing more, signing more and understanding direction much better. They said he came back from Christmas vacation and went from classmate to classmate hugging them (he used to be uncomfortable around the other kids). They went over his annual goals and many of them have now been met. They also noticed he has expanded his interest in different toys instead of going to the same ones. I was starting to feel bad yesterday because I was not seeing as much language improvement as I hoped but I now see the foundation is being laid for that to happen. I am so excited to see where he will be in another month.

Son #3 (age 2-1/2 - NT & celiac) Diarrhea is also a thing of the past. Initially he was having bad diaper rash like his brother but this went away without limiting fruit. Unfortunately I did not think to measure him before starting the diet but it seems he has really grown height-wise. I had to rotate his clothes since the shirts that used to fit him now expose his belly. He is also opening up to new foods - especially vegetables. On New Year's Eve I went to a party my church put on. I brought almond flour cookies I baked knowing there would be treats there. I was careless though and did not wipe down the table in front of him. He put his cookie down a few times then would pick it up to take another bite. After he finished eating his cookies I realized there were crumbs on the table where he had put his cookie that was obviously from a gluten-filled cookies. This infraction usually results in 2-3 days of vomiting, sleepless nights, rolling on the floor in pain and crying. This time was different. Shortly after I got him in the car he threw up. He pointed to his shirt and said, `that came from my mouth - my tummy feels better". He was OK after that! No crying, no tummy ache, no diarrhea etc. It appears he is already healing to the point that an infraction does not affect him as bad as before.

Myself - I have now lost 10 lbs (in a little over a month). I regained 2 lbs after going off the diet for 2 meals but quickly lost it again. I am loving fitting into my "skinny clothes". I also found after those 2 meals that I felt heavy and had a problem with gas. My husband and I spent a lot of time in the bathroom but are now back on track.

I am so glad we decided to try the diet. It is difficult but the benefits are definitely worth it.

[my thanks to Monica for allowing me to use her family's story on my site]

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