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7 posts in this topic

So, after reading a post here the other day, I was intriqued by the the book, Breaking The Viscious Cycle, which describes the Specific Carbohydrate Diet (SCD).

You see, after a period of over one year (very strict adherence to the diet), my oldest son's ttg IgA levels are still positive (currently at 95 down from a starting point of about 150+).

His DGP levels are negative and have been for while, which I read means that it proves he has no gluten in his system. But, the positive ttg IgA level means his gut is still not healing.

He has no symptoms other than low growth. So, we bought the book and are starting within a few days.

I bought the yogurt maker today (along with an ice cream maker, because I want to make homemade ice cream from the yogurt).

I'd love to hear about anyone's experience with SCD.

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I have no experience with SCD but did want to comment on healing. Your son's initial tTG was 150; you say it is now 95 after one year. You think that is not an improvement? That it does not show some healing? If it were the same or if it had gone up, THEN I would be worried. But his DGP is now negative, showing you both are doing a good job with the diet. Healing is not an overnight thing. Depending on the degree of damage and the individual healing abilities of the body, healing can take years. It took me four years. If next year his tTG is 50 I would say, well done, only another 50 to go.

The SCD may be another appropriate step to take for your son. I don't know his particular circumstances and other intolerances. I know I have many others which must be strictly avoided. It takes a while to figure them all out (3 years for me :rolleyes: ). Have you trialled him with probiotics, digestive enzymes, L-glutamine, anything else to help healing?

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I have no experience with SCD but did want to comment on healing. Your son's initial tTG was 150; you say it is now 95 after one year. You think that is not an improvement? That it does not show some healing? If it were the same or if it had gone up, THEN I would be worried. But his DGP is now negative, showing you both are doing a good job with the diet. Healing is not an overnight thing. Depending on the degree of damage and the individual healing abilities of the body, healing can take years. It took me four years. If next year his tTG is 50 I would say, well done, only another 50 to go.

The SCD may be another appropriate step to take for your son. I don't know his particular circumstances and other intolerances. I know I have many others which must be strictly avoided. It takes a while to figure them all out (3 years for me :rolleyes: ). Have you trialled him with probiotics, digestive enzymes, L-glutamine, anything else to help healing?

Mushroom - our sons' GI doc (2 of my kids have celiac) was on our case when both of their levels came back positivie after 5-6 months of going gluten free. Saying we weren't doing enough.

Now, I'll tell you, we completely -- and I mean completely -- changed our way of eating. We got new pots and pans, new toaster, new utensils, cutting board, cookie sheets, etc. Cleaned out the house completely of anything with gluten. The kids only take gluten-free food for school lunches, if we eat out it's rarely and always at a restaurant that does gluten-free.

So, we had to get them tested in October and one son had gone from 84 to 52 (he had originally started at 175). The older son had only gone from 126 at the 6-month check to 105 (ttg IgA). They made us see the nutritionist because they couldn't believe that he wasn't possibly not eating any gluten. She, of course, confirmed we were doing everything we were supposed to be doing.

Got my oldest son tested two months later by the Endocrinologist (actually didn't know he was getting a celiac test; the doc ordered it along with another test because we are trying to get him on growth stim meds since he has low growth and low to borderline normal growth hormones. Anyway, in those two months is when he went from 105 to 95. So, the levels are going down, which I was happy with. But, according to the GI doc, he should have been negative after only a few weeks.

Now, of course I know that is not true. And, I was actually surprised to get that reaction from the doc because she seems so reasonable and smart. We have to have him tested again in March. If he's still positive, they were going to make us do a no grain diet anyway. I'm just trying to beat them to the punch, hopefully see his levels REALLY drop, heal his intestines, and hopefully jump start some growth. At 13 years old, he's only 70 pounds. He'll be going into high school next year!

We haven't tried any probiotics, but I'm hoping the homemade yogurt for the SCD diet will help. I'm hoping it tastes good, too. He's OK with limiting the grains. He actually really likes meat, beans, etc. We are starting with the normal diet, not limiting fresh veggies, beans, honey, etc since he doesn't have GI issues (I mean like blood, diarrhea, etc). Hoping this will help him get better and then we can sort of start back on gluten-free complex grains, if only in moderation.

So, speaking of other intolerances, I too have found food intolerance since going gluten free. I couldn't eat eggs for a couple of months. And, I've found that tomatoes cause an allergic-type reaction, even though I'm not officially "allergic" (I had a food allergy test about a month before we found out about Celiac for me and my two sons). Tomatoes make my face itch a little bit, and I get really tired. I haven't found or noticed any food intolerances specifically for my oldest son, but I suspect the tomato thing with him, too. My other son now has a milk intolerance, so we've been going lactose free. Another good thing about the SCD diet.

So, we'll see how it goes. We've sort of been eating normal still, trying to use up some of the food. However, the grocery store let me return about $75 worth of gluten free stuff I bought (like Chex cereal, Betty Crocker Gluten free mixes, gluten-free pasta, etc). Used the money to invest in an ice cream maker to make ice cream out of our homemade yogurt. I figured it's a good way to get the kids to eat it.

The yogurt maker is arriving on Friday. I admit to being very scared about making my own yogurt.

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What you are finding is that when it comes to celiac, the doctors do not know everything. You are lucky you have one who was at least able to give the diagnosis and follow the children. Actually, the expansion of awareness amongst doctors in the last five years has been quite remarkable. But there is still a ways to go. The fact that she expects them to be healed tomorrow I would put down to inexperience. There is such a wide variation in the healing rates, and I would just tell her that so long as the numbers keep going down you will be satisfied. For some her expectations are unrealistic. My baby brother was given HGH because of his failure to thrive and they didn't know about celiac back then where I live. So he never did go gluten free and he later developed a seizure disorder which I am sure was related.

Tomatoes are in the nightshade family, all of which can potentially be troublesome for us. That is, potatoes, tomatoes, bell (and all) peppers, eggplant, paprika. I personally avoid all of these; so does GottaSki (they give me hives).

I am not personally familiar with the SCD and do not follow it. If it allows corn and soy, you should keep an eye out for reactions to these as they are potentially troublesome too. I hope they don't create any problelms for your family. :) The milk intolerance should improve for your son once his gut heals. Until it does there is always a risk of developing an additional intolerance because the foods are not being broken down enough before they pass into the blood stream and there is a risk of developing antibodies to them. Do not be afraid of making yogurt; it is dead easy and it should help with healing.

Good luck with following the SCD. I hope it works for your family and wish you all good healing in 2013.

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So, we've been doing SCD for almost two weeks now. I can't believe how much harder it is to do SCD than just doing gluten free. Corn is in EVERYTHING! We went to buy a roasted chicken at Cosco the other day -- one of our gluten-free staples when we are short on time -- and it's seasoned with sugar and corn starch! gluten-free salad dressing with sugar! Turkey breast with corn starch, even my taco seasoning with sugar and corn starch.

But, we are learning. I made the homemade yogurt, and we've been using it to make lactose-free ice cream in the ice cream maker, sweetened with some honey. My son (the one who's not quite at "normal" levels) is taking salad for lunch every day instead of a sandwich with gluten-free bread. I've been baking with nut flour, so he has snacks to eat (so far, my husband and I are the ones eating the stuff!), he's been eating beans to try and stay full without the carbs from chips or gluten-free bread or whatever.

I admit that I do feel more rested in the morning. He also seems to wake up with a little more spring in his step (as much as a 13-year-old boy can). So, we are hanging in there, waiting to see if this will do him any good.

Off to make some SCD ice cream now.

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From own experience I would very much advice against following a low carb regimen for healing gut health and food allergies. It will potentially further damage your metabolism and make one even more sensitive. I would advice incorporating lots of safe starches such as white rice and root vegetables to keep metabolism high, especially for growing children.

Nut butters contain problematic antinutrients and an excess of inflammatory and thyroid-surpressing omega 6 oils. Instead I would recommend incorporating healthy fats such as butter/ghee, coconut oil, lard, tallow. Just my 2 cents

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
    • Personally, I would ask for the full Celiac panel and see what that shows.  I mean, the full Monty, not just cherry picking testing.  On the full panel, if the tTg and the EMA come back positive, that is a diagnosis without biopsy.  This is how I was diagnosed and there is absolutely no doubt I have Celiac.  I presented with classic celiac so it was a no brainer with my blood results. If you cannot stick to the diet religiously, without cheating, unless you have a biopsy picture, then I would go on to have a biopsy.  Like your daughter, I was way too sick to have one done at the time.  They would not have agreed to use sedation because I was so anemic and malnourished and that ended that!  Good luck with whatever you decide!
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