Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 I need some encouragement from someone out there!!! My 13 year old daughter has celiac disease and did ok on the gf diet for 1 1/2 years, up until this summer. Her anxiety/panic attacks came back (she had them before being diagnosed with CD). and alot of the same stomach issues came back - feeling like someone is punching her, or putting a spear in her stomach, etc. A nutritionist caught that she has a bacterial overgrowth of d-lactate and we started the SCD a week and a half ago. Plus we are trying to get the food intolerances under control which is hard with the SCD since they are dairy, egg whites, almonds, pineapple and peanuts. The dairy and egg whites are the hardest to give up with this diet since all the recipes call for eggs and butter. So the dairy issues on this diet are butter, a few cheeses and homemade yogurt. and I'm not sure she can have them with a dairy intolerance. Someone please help me with this. Also, I've been using Agave for her instead of honey and now someone emailed me today saying Agave isn't allowed on this diet. So that makes me mad that the nutritionist didn't know that. She has missed school due to the anxiety, all of this school year. We are seeing a therapist and she's on Paxil. She needs to be back at school and enjoying a typical 13 year old life. This has been extremely stressful on my family. I just need some encouragement that I'm on the right track and that I will see a change in her soon with this diet taking away the anxiety/panic. Someone out there, please respond and give me your opinion!!!!!! Marla - a desperate mom Re: healing question Hi Eileen,From what I have learned over the past 18 years from various doctors(GI's) around the world- living with advanced Crohn's/Colitis. . It isvery important to listen and evaluate the patient clinically. Sometimes people with IBS don't show inflammation or anything visibleon tests. It does not mean they do not experience symptoms. In factI think many of our issues start with no visible degeneration/ damageand if we would preempt when we first start feeling crappy by doingthe SCD we would bypass much suffering and not get to these ridiculousadvanced states of noticeable disease. I think you were in thebegining throws of this nightmare and started the diet in the nick oftime.My GI had a patient that had 13 fistulas and it was never visible onnot one CT. He ran a marathon with this. One day he felt bad and soon. How odd is that? When I had a bowel obstruction it was notvisible on the CT. They did however see -significant- back-up on aregular XRAY. One year I had so much "liquid" in my bowel on my CTimage my doctor was surprised I was walking.Why are you experiencing symptoms 9 months in? Who knows. Why am Iexperiencing issues? I think it has to do with years of eating crappyfood- the Standard American Diet and my gut ecology being completelyout of whack. Often times gut ecology is so imbalanced that yeastissues are present with other pathogens/microbes or even parasites. They feed one another- what makes this even more complicated is thatthe housing structures of these microbes are called biofilms. Justbecause we eradicate the actual bacteria is does not mean we eradicatethe biofilms- which are notoriously stubborn and know how to surviveeven the harshest conditions. Conventional labs are worth zilch inthis arena so it is important to go with some of the private labs astheir standards of testing and incubation of the specimen differs thanmainstream. Sometimes when stool is not firm or too much gas ispresent it is important to exclude things like SIBO. Sometimes itjust takes time to get yeast under control which I think is part ofyour issue example; odd vaginal itchiness, different inflammation likeyour finger or your sinuses acting up- that to me all points to yeast.Which I think is really one of the main ingenious points behind theSCD is to restore gut ecology. Much of our health depends on that.Looking for a diagnosis is a wild goose chase unless you have specificbothersome symptoms that you haven't addressed. In General you don'twant it to get to that point and get a name. You already know youhave Celiacs and you did have corrosion in your intestine. It's-healing-. It could still be sensitive. You could be sensitive. Some people take longer to proceed on this diet. I have a feeling-for me- 2 years will just be the begining as I have so much damageand side line issues and complications. Some people say SCD is a cure. I am happy SCD just helps me managethese horrible symptoms. I hope it cures me and gives me my life backtoo.JodiSCD 12 monthsCrohn's/Colitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 you should join pecanbread, they're geared to parents with sick kids and will possibly be of more direct help to you and dealing with your child's food sensitivities, since that is common there. http://www.pecanbread.com/new/local1.html regards, Mara ---- Original message ---- >Date: Sun, 12 Oct 2008 19:25:10 -0700 (PDT) > >Subject: Re: Re: healing question >To: BTVC-SCD > > I need some encouragement from someone out there!!! > My 13 year old daughter has celiac disease and did > ok on the gf diet for 1 1/2 years, up until this > summer. Her anxiety/panic attacks came back (she > had them before being diagnosed with CD). and alot > of the same stomach issues came back - feeling like > someone is punching her, or putting a spear in her > stomach, etc. > A nutritionist caught that she has a bacterial > overgrowth of d-lactate and we started the SCD a > week and a half ago. Plus we are trying to get the > food intolerances under control which is hard with > the SCD since they are dairy, egg whites, almonds, > pineapple and peanuts. The dairy and egg whites are > the hardest to give up with this diet since all the > recipes call for eggs and butter. > So the dairy issues on this diet are butter, a few > cheeses and homemade yogurt. and I'm not sure she > can have them with a dairy intolerance. Someone > please help me with this. Also, I've been using > Agave for her instead of honey and now someone > emailed me today saying Agave isn't allowed on this > diet. So that makes me mad that the nutritionist > didn't know that. She has missed school due to the > anxiety, all of this school year. We are seeing a > therapist and she's on Paxil. She needs to be back > at school and enjoying a typical 13 year old life. > This has been extremely stressful on my family. I > just need some encouragement that I'm on the right > track and that I will see a change in her soon with > this diet taking away the anxiety/panic. Someone > out there, please respond and give me your > opinion!!!!!! > Marla - a desperate mom > > Re: healing question > > Hi Eileen, > > From what I have learned over the past 18 years from > various doctors > (GI's) around the world- living with advanced > Crohn's/Colitis. . It is > very important to listen and evaluate the patient > clinically. > Sometimes people with IBS don't show inflammation or > anything visible > on tests. It does not mean they do not experience > symptoms. In fact > I think many of our issues start with no visible > degeneration/ damage > and if we would preempt when we first start feeling > crappy by doing > the SCD we would bypass much suffering and not get > to these ridiculous > advanced states of noticeable disease. I think you > were in the > begining throws of this nightmare and started the > diet in the nick of > time. > > My GI had a patient that had 13 fistulas and it was > never visible on > not one CT. He ran a marathon with this. One day he > felt bad and so > on. How odd is that? When I had a bowel obstruction > it was not > visible on the CT. They did however see > -significant- back-up on a > regular XRAY. One year I had so much " liquid " in my > bowel on my CT > image my doctor was surprised I was walking. > > Why are you experiencing symptoms 9 months in? Who > knows. Why am I > experiencing issues? I think it has to do with years > of eating crappy > food- the Standard American Diet and my gut ecology > being completely > out of whack. Often times gut ecology is so > imbalanced that yeast > issues are present with other pathogens/microbes or > even parasites. > They feed one another- what makes this even more > complicated is that > the housing structures of these microbes are called > biofilms. Just > because we eradicate the actual bacteria is does not > mean we eradicate > the biofilms- which are notoriously stubborn and > know how to survive > even the harshest conditions. Conventional labs are > worth zilch in > this arena so it is important to go with some of the > private labs as > their standards of testing and incubation of the > specimen differs than > mainstream. Sometimes when stool is not firm or too > much gas is > present it is important to exclude things like SIBO. > Sometimes it > just takes time to get yeast under control which I > think is part of > your issue example; odd vaginal itchiness, different > inflammation like > your finger or your sinuses acting up- that to me > all points to yeast. > Which I think is really one of the main ingenious > points behind the > SCD is to restore gut ecology. Much of our health > depends on that. > > Looking for a diagnosis is a wild goose chase unless > you have specific > bothersome symptoms that you haven't addressed. In > General you don't > want it to get to that point and get a name. You > already know you > have Celiacs and you did have corrosion in your > intestine. It's > -healing-. It could still be sensitive. You could be > sensitive. > > Some people take longer to proceed on this diet. I > have a feeling > -for me- 2 years will just be the begining as I have > so much damage > and side line issues and complications. > > Some people say SCD is a cure. I am happy SCD just > helps me manage > these horrible symptoms. I hope it cures me and > gives me my life back > too. > > Jodi > SCD 12 months > Crohn's/Colitis > > Quote Link to comment Share on other sites More sharing options...
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