chatycady
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Hi! My 8 year old daughter was diagnosed in June of '08 with Celiac and felt better on a gluten-free diet for about two months and then started in with more pain that was vague at first and then settled into always being around her appendix. This was going on for months.
After not very much help from doctors, we started on the SC diet this week. This is the first week basically since diagnosis that she hasn't needed Miralax everyday. This is also the first week that she went to school two days in a row. That may not seen like much, but trust me it's a world of difference in a few days.
She still complains of having pain, but it's not all encompassing. She has some energy and wants to do things. I'm not sure if it will last and it is a lot of work, but to see my little girl act like a normal healthy kid again makes it all worth while.
At first I thought the diet was alot of work too. Making yogurt, broth, etc. etc. But I've gotten into a routine and I actually enjoy cooking again. I can make yogurt quicker and get other things done while I wait for it to cool, etc.
I've been on the diet for 6 months and have never felt better or had so much energy. And I sleep like a baby. Just be careful of the almond flour and honey. Too much at first can cause reactions. I eat baked goods only a couple days a week, and only one serving a day. Three or four bars or slices of bread is too much for my intestine to handle. Also the beans give me gas! But at least I feel good but no one else around me does though!
It is all worth while!
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Hey everyone,
I just wanted to give an update. I am two and a half weeks into my SCD. I am not sure I am getting any better-- i guess the most i can say is that things are different. My constipation has not gone away and i have had to increase my laxatives-- but i am having random D (not sure if its from any of my medications or what it means). But then i will be very badly constipated for several days with little help of my laxatives....so im confused. I have stayed with the basic diet (meats, eggs, gelatin, yogurt, DCC in small amounts) and have added the pecan butter muffins, apples, paires, zuchinni, avaocados. I will say i was vegan for a year and recently started some meat-- so this diet is a huge change for my body.
I am taking enzymes, magnesiusm, Carlson's fish oil, miralax and amitiza+ an herbal laxative.
I had a chorns test with the barium done Monday which came back normal with the exception of my transit time-- usually it takes about 1-2 hrs for the liquid to travel through the intestines and it took me almost 4. So things arent moving through my intestines quickly enough-- which makes sense....NOW-- how to fix it!??? Any thoughts? I drink 75 ounces of water a day and exercise etc...I am thinking of starting to be more agressive with the veggies and making sure they are the main course of every meal-- maybe that will help? I'm just not sure the diet is for me.
How about upping magnesium supplements for a week or two? I used to take 1000mcg's in the morning and again at night. The other things you are taking are they SCD compliant? I'm scared of those type things as I seem to react to them. The herbal laxative? What's it made from?
Do you eat lots of celery? Just some ideas you may want to try. Hope you get the answer.
The diet worked wonders for me. I've started my 6th month and feel healthy. I think I can eat this way the rest of my life. I plan on planting a garden this year and grow my own tomatos, squash, etc. Can't wait to get started!
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I was diagnosed with celiac disease at the end of November 2008. This was quite a surprise as I don't have any of the GI symptoms that most people have. Well, actually, I do experience bloating, but it was never out of control. I was diagnosed after stress fracturing my pelvic bone and going through a DEXA scan. They ran bloodwork and then I went through the biopsy process.
So, I think, I have been gluten free since the end of November. If I am getting gluten, I am not aware of it. Anyways, I feel terrible! I am constantly tired, very depressed, and very irritable with my family. I am gaining weight, which makes me more depressed, and I just dont' feel better.
I thought a gluten free diet would make you feel better. A diet full of fresh vegetables, fruits, and meats should make you feel better. I have also experimented with some gluten free breads and gluten free desserts (mainly fudge). I don't know what I am doing wrong and I feel helpless. I am so sick of being depressed and irritable. I have never been that kind of person. This change in personality is really bothering me and I want to feel like my old self.
Did anyone else feel like this? How long before you felt better? Any suggestions on my diet?
I'm sorry you are feeling so poorly. I too struggled with the gluten free diet for over a year, but then I came across the Specific Carbohydrate diet. It's the original gluten free diet for celiacs. It helped me gain back my strength, my sanity, and my health. I read the book breaking the vicious cycle, it had a really good chapter on celiac disease and how the diet works.
I hope you find the answer and you get feeling better!
God bless.
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That is a very good question that I am looking for the answer to aswell...
My son was diagnosed in Oct with celiac (blood test confirmed)...he was never really sick, diarrhea ('D') once or twice a week, compained of a sore stomach once or twice a week...when he has 'D' it is a one time thing - he goes to the bathroom once has 'D' and then he is fine for another week. They sent him in for a whole battery of tests, (celiac was only one of them) so they weren't really looking for it, it was just on the list of tests they scheduled him for.
....regardless he has been gluten free since the diagnosis but he isn't really getting any better. We have been to a nutruitionist, dietician, pediatrician, allergist and now a surgeon. He was put on the disacharide - no lactose or succrose - and that didn't change the weekly visit to the bathroom either. It actually made him worse - no energy, very pale etc...he has had extra blood tests to check his levels - iron, hemoglobin, white, etc and they all came back normal.
He has eaten gluten by accident but never reacted to it until 3 1/2 days later. Now honestly I can't say that he was reacting to the gluten or he was just getting his weekly bout of 'D'. He also ate an Oreo at a friends house and didn't react at all.
Now the surgeon has scheduled him for a biopsy so he is eating gluten. And when I say he's eating gluten - I mean everything in sight!! He started the new diet on Tuesday afternoon and ate a whole lot of gluten for 4 1/2 days before he got his weekly bout of 'D'. Now he has eaten a whole lot more and he seems fine again.
My question is - is this normal??? Everything I read on here the reaction is almost immediate (5 mins to 12 hours) but his syptoms don't seem to fit the norm...anyone else out there been thru this??? If so, do you have any advise???
Yes, it is very normal! There will be times when he will appear to be normal, but each bout will be more severe and more damage is done. He will have weeks of normalcy, then days of illness. Back and forth until eventually he is malnourished and has all sorts of problems from anemia to heart or liver problems. Plus he may develop all sorts of autoimmune problems.
The gluten free diet alone does not work for everyone. Check out the specific carbohydrate diet. It is the original cehiac gluten free diet. It's a diet that heals the intestines, and eventually one will get bettter.
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First off, YAY FOR YOGA! I love, love, love yoga and recommend it for everyone, it's such a fantastic activity for mind, body, soul. What kind of class did you take?
I'm very familiar with the Cody area, let me know if you need any info or help! I've spent many a summer there. I'm not sure about the availability of a cabin to RENT, though plenty are usually for sale (for an arm, a leg, and your firstborn.) There are plenty of ranches on the north fork that have cabins available to book for extended stays, though meals are provided by their kitchen.
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Well I've come down with some sort of virus or something. I completely lost my voice on Monday and it's still not returned. Coughing, wheezing, headache, swollen throat, the works. So much for feeling like my old self. But truth be told, I am THRILLED that for once, my malaise is NOT due to food! Right now I'm taking it easy, drinking gallons of tea, hoping to take a nap later. (I am home sick from work.)
THis yoga class used an excercise ball and it was difficult to keep my balance! I loved it and plan on going back.
So any special place you would recommend I should see in Cody? I will definently go through the museums. Love american history.!
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Hey is Welches grape juice off the safe list??
I heard on a Yahoo SCD group today that there were processing changes and its no longer on the safe list...is that true!??
I've made all my gelatin with it! Does anyone know?
I don't know, but I would call the company. Usually there is a website or 1-800 number you can call and ask if they added sugar or anything. I've got a similar question about Smuker's all natural peanut butter. Is it legal?
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Cat is right on! I also feel like I'm 20. I'm 53 and have suffered from this disease since my teens, but wasn't diagnosed until 51! I've spent most of my life extremely fatigued and anemic.
I follow the specific carbohydrate diet. I gave up a lot, but also am eating delicious food and am no longer miserable! WHOO HOOO!
I believe simple, natural and plain food will make me better.
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I also make 24 hour yogurt that is delicious and lactose free. Check out the diet. It may work for you also.
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I had pica until they found I had pernicious anemia. (ice) B-12 shots solved that. But I still crave salt. I just ate a whole jar of dill pickles tonight. I figure I must need it. I have low blood pressure.
I still like the smell of burned matches. And I ate play doh too as a child I still like the smell of a fresh can!
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Good evening all;
I finally ditched the coffee and illegal creamer (just a teaspoon in my coffee) and I have found my muscle cramps are not as intense or as often.
I went to my first Yoga class to night, ate before I left, which was a big mistake. I almost threw up in the middle of the class! My foot started to cramp a little, but I was able to work it out before it got worse. I guess I forgot about the part ABOUT NOT eating before excercise!
I'm hoping the coffee and creamer was the last piece of the puzzle. I found I am still limber, but really pretty weak in my core muscles.
The diet is working great for me. I've been on it for 6 months now. Still have trouble with pecans, peanutbutter and legal carbs. Have to watch that pretty close. Honey seems to be okay.
I'm planning a road trip to the Black Hills and Cody Wyoming this summer. Goin' alone. Looking for a cabin with kitchen so I can cook my own food and hike and horse back ride. I couldn't have done this 2 years ago!!
Thank you Lord for the SC Diet and good friends!
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hi,
this is my first post so bear with me.
My friend(female) has celiac disease in which her doctor has deemed it: unresponsive. I really care about her and her well being. I am also very worried because as I'm writing this (1 in the morning), she is currently in alot of pain from it. She says that she was stressed and did that to herself(which I don't fully Belive), but I'm very worried about her because it happens semi-often to her. She actually just fell asleep so I am wondering these things:
1. Is it safe for her to fall asleep while in alot of pain(crying it hurts so much)?
2. Is anyone here in her situation with the unresponsive celiac and has found a way to fight it, or even if they sometimes have the same pain as her?
3. Since the gluten free diet isnt working, does anyone have any tips I can share with her?
Anything is appreciated.
Thank you for your time,
grshockey
Check out the original gluten free diet for celiac. It's called the Specific Carbohydrate Diet. Dr. Haas had 100% success with it. Do web search and read about it. It worked for me! Gluten-free is not always enough. Take care and God speed!
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Colby cheese, swiss cheese and cheddar cheese have less lactose in them. You may be okay to eat these.
Or you can always make your own 24 hour yogurt that is totally lactose free. Many of us celiacs make our own.
You can find the recipe at www.scdiet.org
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I stopped eating bananas around age 7, then started again when I was 16, briefly. The last few times I had a banana.. I was probably the sickest I have ever been in my life. Ever. Seriously.
I was shaking, felt weak as could be, dizzy, tingling, couldn't move, and was made even more nauseous than gluten makes me. Not an allergy, and seemed too severe to be a blood-sugar reaction. The sickness lasted 2 hours. Doctors could not explain.. and I have avoided bananas ever sense.
Is that a sign of Addison's?
(I did have every other symptom of Addison's at that time, from salt cravings to low blood pressure/sugar, and general energy problems.)
I don't know much about Addison's, but I do know that banana's are very high in carbs. Celiac's don't digest carbs the best. Eat banana's that are very very ripe only - lots of dark brown spots. (Who like's them this way???)
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Really, there is no such thing as adrenal fatigue.
They work or they dont (which can be either right in the adrenals-Addison's Disease, which turns you orange, or in the pituitary, which makes you very pale. They both make you deathly bone tired, unable to get out of BED tired, weight flies off you, hyperallergic, hair falls out, and achey as all get out).
Of course, there is a wide range of normal, from 'yeah they're technically normal but barely' which may be one cause of CFS, to just barely sub-Cushings (which is the opposite of Addison's, except it lives in the pituitary and is usually caused by a tumor).
But sub-optimal functioning isn't caused by wearing them OUT. It can be natural, it can be an autoimmune process that either stops or doesn't (leading to addison's), it can be a pituitary glitch, et cetera.
If you have true adrenal failure, there isn't an herb or supplement out there that will give you back your life. You will be sent from specialist to specialist, thinking you found the answer with the rheumatologist or the toxicologist or the gastroenterologist or the naturopath or whoever. And you watch the weight continue to drop, and you get weaker and paler and more convinced that whatever you have, you are going to die.
Then you see an endocrinologist. And he takes one look at you, sees that your thyroid has been tested ad nauseum TYVM, and does an ACTH stim test. Your cortisol number pre-ACTH is 3 (normal for that time of day being above 15) and after is 12 (normal at that time being at least 25). The diagnosis: central adrenal failure. Not fatigue. FAILURE.
And you will have to take steroids for the rest of your life. In case of emergency you will need to carry a kit with intramuscular needles and injectable 'stress dose' steroids. Otherwise if you get mugged or in a car accident or vomit or anything YOU COULD DIE. Your blood pressure could crash through the floor, you have shaky hands and under a minute to get the needle in because of the impending crash, but you stab yourself or you DIE of adrenal crisis.
But the steroids give you back your life, so you deal with it. And you take the risks, even the ones that might require a needle. Because life is for living.
I understand wanting an answer for a myriad of symptoms. But chronic fatigue for no good reason (or undiagnosed nutritional deficiencies, or sleep issues, or the wrong phase of the moon) is FAR more likely than "mild" adrenal failure, seeing as failure means not-working. And, having lost a year of my life to adrenal failure, having almost died of adrenal crisis, and having gone from a healthy 143 pounds to 85 pounds in several months, I do not wish adrenal problems of any sort on ANYONE. Telling a doctor you have adrenal problems can get you the wrong treatment if they believe you(and crisis-dose steroids can make you psychotic if you don't need them, even if you're normally stable as a rock), or it can make life more difficult for the person who comes in with a genuine adrenal crisis 3 days later. I know that doctors are not fashionable here, but they ARE a fact of life, and when it comes to my hormones I trust my award winning endocrinologist over the herbologist down the street any day.
If you're suffering, look for another answer. If you cannot find one, and are convinced it is your adrenals, have them tested the conventional way. Then you can get the LIFE SAVING treatment before you crash and burn really really hard.
Kassiane
autistic
bipolar
epileptic
celiac
corn allergic
salycilate sensitive
soy sensitive
shrimp anaphylactic
drug allergies
central adrenal failure
central diabetes insipidus
ehlers danlos type 2
MECP2 mutation
Head injury or 2
TMJ
but otherwise perfectly healthy!
Ok. I searched the web and found some of the symptoms for addison's disease are: low blood sugar, low blood pressure, headaches, and muscle cramps, fatigue. I have all of these. Should I be tested?
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My GI told me that he could test for intrinsic factor whether I was deficient or not, so he just did a simple blood test. I still take my shots now that I'm no longer deficient, but I definitely stretch them out a lot longer than I used to. Now that my B12 levels are so high from years of shots twice a month, I don't really need to worry about a sudden dip. B12 can stay in your system for a very long time, so by the time you get deficient, it means you've been deficient for a very long time. When I need a shot, I can definitely feel it throughout my body.
Do you have an digestive issues when you are low on B-12? I used to get indigestion and have "butterflies" in my stomach. I have delayed shots and get these symptoms. Just wondering.
Thanks
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I have been diagnosed with DH for seven years and just recently got a great cookbook which has a great gluten-free Foccacia Bread recipe in it. I have gone overboard and eaten it every day--sometimes several pieces a day. I just had a blood test which indicates that my blood sugar is at 211--very high, and they told me that this is considered pre-diabetic. (My diabetic friend tells me that this is terribly high). This has never happened to me before and I wondered if it could be caused by all of the cornstarch and rice flour that I have been eating. I come from a family with diabetes and realize that at my age (57), I could be getting diabetes anyway--but I really want to lower this blood sugar count and am thinking I should stop eating bread altogether. Can anybody help me? TIA--
Gram
Well, I know I get very LOW blood sugar (hypoglycemia) from gluten-free grains. I don't eat any of it now. Most gluten -free breads are even higher in carbs than regular bed, so I would think it would be a problem for people with blood sugar issues.
Sorry - I'm not much help.
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Hi everyone,
today is my first offical day on the SCD. I am following the suggested Intro diet provided by pecanbread.com. They dont mention the dry curdled cheese or yogurt in the steps they outlined (it isn't terribly complete, but offeres some good guidelines).
I am doing the yogurt-- but wasnt sure if the dry curddle cheese is something that I can include in the first 5 days of intro? How did you all proceed??
I have been on the diet for 5 months and still struggle with DCCC. It has a little lactose in it. I think 1% or so and it bothers me. So I make the yogurt cheese and use it instead. Go slowly on the yogurt, is my advice. I love the stuff and eat it at every meal. I'm hoping the calcium will improve my osteopenia.
I hope the diet is as successful for you as it has been for me. It's been a life saver!!
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On another topic, I am still starving half the day, and this morning doubled my usual meat serving at breakfast. It made a big difference, but I still wonder: how much meat do you guys eat? My meat/eggs total is around a pound a day--seems like a lot, is it? I wish I had a side of beef cut and wrapped in the freezer--do others feel this way? I weigh a few pounds less than I did when I started this diet last April.
I eat 2 eggs everymorning. That's 14 a week! Then a double serving of meat at lunch and supper. I will make a hamburger dish that has a pound of hamburger in it. And will finish it off in one day. I have finally gained a couple of pounds and think the SCD yogurt is what has helped. The yogurt really helped me with the hunger pangs.
I also snack on dill pickles, olives, carrots, celery and apples. I have been known to kill a jar of dill pickles at one sitting. I crave salty things which may be related to adrenal problems. But tests were okay.
I have low blood pressure so think the salt will help, not hurt me! THe added fat has made my skin softer and hair shinier - or it could be all the olives I eat.
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You may have a problem digesting and metabolizing protein. My sister has this trouble and it's associated with adrenal problems. Protein such as beef and pork give her trouble.
Chicken and fish are easier to digest. You can add water to the beef and let it simmer. It may make it easier to digest. You may want to check out the specific carbohydrate diet. It addresses other food issues. In time you may get better and can eat everything but gluten.
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Unfortunately I may have been one of those people. I don't think I ever told anyone that they should see a shrink, but I may have thought it!
Last night I attended a retirement party. The meal was catered. I took my yogurt along, just in case there wasn't anything to eat. Sure enough, everything had some type of cream soup on it or mixes. So I quietly sat and tried to eat my yogurt. I was asked alot of questions.
I finally said. IT'S ONLY FOOD! I'm FINE! They got the message.
I've been told my eyes are brighter, I'm happier, and fun to be with. That's all I need to hear.
They are the ones obsessed with food. We aren't. We eat healthy. We don't drool over desserts or swoon over cheesey potatoes, or eat till we are stuffed and uncomfortable.
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Thanks for the advice. I think I'll stick with the shots. Maybe when I'm 100% better I"ll go off the shots and see what happens. I had a lot more symptoms than just anemia before they found the anemia. So to play it safe I'll continue.
Every month when I take the shot, I wonder - Do I need it?
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Schillings test. But I guess I thought it wouldn't work again since I am not deficienct any longer. I also thought it wasn't used much anymore. Not accurate?
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My favorite snack:
Peanut butter balls
1 cup all natural peanut butter (no additives except salt)
1/3 cup honey
1/2 cup unsweetened coconut
Mix together. Shape into 1 inch balls with damp hands. Freeze. Eat.
Sometimes I make them with ground almonds, walnuts or pecans and flavor with maple flavoring.
When I was traveling, I mixed the peanut butter, honey and coconut and left it in the PB jar. Ate it with a spoon!
What brand of peanut butter do you use? Is Smucker's natural okay? Thanks
Please Help! I'm New To This & I'm So Miserable Tonight
in Food Intolerance & Leaky Gut
Posted
I agree with Mushroom. It's possible that your intestine is so damaged that you don't produce digestive enzymes, therefore you need simple foods to eat.
Home made chicken soup from scratch will help you heal.
Water
Fresh chicken (NO ADDITIVES!)
fresh carrots
fresh celery
fresh onions
salt and pepper
Hope this helps you feel better!