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Mia H

Thought The Scd Was Going To Cure Me

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Oh man! I have been gluten-free/CF since May. But still was not feeling better in terms of my chronic fatigue. So I thought I would try the SC diet, I have been on it for 15 days and absolutely STARVing for all of it. Found out that I am expecting (yay!) and today found out I have lost 7 pounds in these 15 days. I don't think that is good for baby!

I felt better initially on the diet but 10 days in tried some homemade mayo and got sick and have felt yucky for 5 days. I felt so bad today I skipped lunch. Then by dinner I was so hungry I was confused and had a headache and couldn't think at all. I took my daughter to dancing tonight only to find out she had it last night. (and this was the 2nd week so I should have remembered).

Anyway, I was so hungry I had to eat something fast! So my husband went and got a pizza. It was good, but not 5 minutes later I look 4 months pregnant rather than 1. The bloating! ooooooh, it's practically hard to breath.

Anyways, I'm back to just plain old gluten-free for now. I was eating dry curd cottage cheese on the sc diet and not having a problem with it so I may have a little cheese now and then.

Why does it take so many times for me to learn? Why can't I figure all of the puzzle out of my chronic fatigue. If i'm never going to feel better again can't I just enjoy food at least. uuuuug

Mia

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Have you been tested for allergies, vitamin deficiencies etc?

Congratulations on the upcoming little one next year! :D


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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depending on how bad your condition is, it may take months before the fatigue lifts. i still have bad days, and i'm almost 8 months gluten-free. also, if you are in early pregnancy, fatigue is going to be a part of life. sorry you are having such a hard time. but don't starve yourself. take care of you and baby. congrats!


Diagnosed Celiac in February 2006

Villus blunting and positive blood test

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Congrats on the pregnancy! I've actually heard that it's not uncommon to lose weight during the first trimester (someone who's been pregnant before can probably confirm this better than I can :) You've only been gluten-free for four months which isn't that long. I didn't get over my chronic fatigue until about nine months in. First your body has to heal, then you have to build up your strength again. So stick with the diet, things should get better eventually. I'm sure your baby will be much healthier if you stay gluten-free.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Mia, we haven't heard from you in so long!!! Congratulations!!!

I have found my missing link to be adrenal fatigue. You can also google adrenal burnout. I read a book called Tired of Being Tired by Jesse Lynn Hanley, MD and this is finally helping me. I've been gluten-free for ten months, which helped a lot, and casein free for a few months, but the fatigue wasn't going away. Four weeks into this program and I'm finally feeling human again though I still have a ways to go.

You will have fatigue with the pregnancy, but if you had it before, you might want to try to find out why.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hey Carla,

This whole jouney 2 years ago started with a diagnosis of adrenal fatigue by my naturopath. In the am your cortisol should be 13-25 and mine was 4! He put me on Isocort which is a cortisol support. It did not help and it was very difficult to get off of. He just could never figure out all the things bugging my immune system. I'm glad you found out what was bothering you and its helping. Thats awesome!

And I know the others that responded are right-I just need to be patient! I definately won't have gluten again (but when your in less than a year, sometimes you have to test it!)

I have some allergy tests pending right now and my B12 was normal.

I think I got my hopes up because the first week on the SC diet I felt very good! Then I screwed it up by having homemade mayo which made me sick. I may actually try the diet again but not the intro again. It is very hard!

Mia

Mia, we haven't heard from you in so long!!! Congratulations!!!

I have found my missing link to be adrenal fatigue. You can also google adrenal burnout. I read a book called Tired of Being Tired by Jesse Lynn Hanley, MD and this is finally helping me. I've been gluten-free for ten months, which helped a lot, and casein free for a few months, but the fatigue wasn't going away. Four weeks into this program and I'm finally feeling human again though I still have a ways to go.

You will have fatigue with the pregnancy, but if you had it before, you might want to try to find out why.

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Most of the things I've read about taking a cortisol supplement have been negative. My holistic doc recommended one to me, but I am not taking it. I'm doing all the other things, and that is what's making me better. Do you still feel that you have an adrenal problem, or do you think it's cured now?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi Mia:

Even after I abstained from gluten, dairy and soy for over 2 years, I still had bloating, gas, cramping pains and chronic fatigue. The intestinal symptoms were more tolerable than the excruciatingly painful symptoms which I had while eating gluten and dairy, but the fatigue remained. So I decided to see a naturopath who would test me for more food allergies (ELISA blood test) and bacterial/yeast/parasite problems (stool test). Those tests found 2 more allergies (eggs and cane sugar) and a bad Klebsiella bacteria infection but no good guy bifidobacteria (bacterial dysbiosis). So I abstained from my gluten and my 4 other allergies and took caprylic acid to treat the Klebsiella, and then high dose probiotics to restore my intestinal balance with 'good' bacteria. During the past 2 months I have slowly regained energy and enthusiasm about doing more than just sitting in front of this computer :( which I often did before those diagnoses. The energy increase has been so slow ... almost imperceptible, but I've been blogging about my symptoms and well being while undergoing that treatment. So I know the treatment and abstaining from those foods definitely made a difference. Higher energy levels greatly affected my mood so I feel more enthusiastic and optimistic about taking on more responsibility and activities.

Pregnancy may currently contribute to low energy levels. However if chronic fatigue has been an ongoing thing for you, I'd recommend you consider testing for other allergies or bacterial dysbiosis. My doc wrote an article in his recent newsletter about fatigue and food (allergies). Here's a link to that article: http://www.Lame Advertisement.com/Newslett...ateSept2006.pdf

BURDEE


Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.

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I think I got my hopes up because the first week on the SC diet I felt very good! Then I screwed it up by having homemade mayo which made me sick. I may actually try the diet again but not the intro again. It is very hard!

Mia

Mia, did you make the yogurt? I plan to do that.


Lee

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Mia- I am not familiar with the fatigue you are having. I am sure being pregnant adds to that. It did for me. (Congrats btw!!) I can tell you that I lost a lot of weight during my first trimester. My doc said it was ok for that period of time, but if I didnt start to gain weight at the appropriate time, then it would be a problem. Hopefully that will work it self out!

Congrats again!!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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Most of the things I've read about taking a cortisol supplement have been negative. My holistic doc recommended one to me, but I am not taking it. I'm doing all the other things, and that is what's making me better. Do you still feel that you have an adrenal problem, or do you think it's cured now?

What other things did they recommend? I think as I remove things that bother my immune system they are slowly healing. Not there yet! I'm trying the sc diet again and hope it will do the trick. I also plan to get my mercury fillings out after I'm done nursing.

Mia

Hi Mia:

Even after I abstained from gluten, dairy and soy for over 2 years, I still had bloating, gas, cramping pains and chronic fatigue. The intestinal symptoms were more tolerable than the excruciatingly painful symptoms which I had while eating gluten and dairy, but the fatigue remained. So I decided to see a naturopath who would test me for more food allergies (ELISA blood test) and bacterial/yeast/parasite problems (stool test). Those tests found 2 more allergies (eggs and cane sugar) and a bad Klebsiella bacteria infection but no good guy bifidobacteria (bacterial dysbiosis). So I abstained from my gluten and my 4 other allergies and took caprylic acid to treat the Klebsiella, and then high dose probiotics to restore my intestinal balance with 'good' bacteria. During the past 2 months I have slowly regained energy and enthusiasm about doing more than just sitting in front of this computer :( which I often did before those diagnoses. The energy increase has been so slow ... almost imperceptible, but I've been blogging about my symptoms and well being while undergoing that treatment. So I know the treatment and abstaining from those foods definitely made a difference. Higher energy levels greatly affected my mood so I feel more enthusiastic and optimistic about taking on more responsibility and activities.

Pregnancy may currently contribute to low energy levels. However if chronic fatigue has been an ongoing thing for you, I'd recommend you consider testing for other allergies or bacterial dysbiosis. My doc wrote an article in his recent newsletter about fatigue and food (allergies). Here's a link to that article: http://www.Lame Advertisement.com/Newslett...ateSept2006.pdf

BURDEE

Thank you Burdee for your reply. I too felt that after being off gluten dairy and soy for 5 months should not have such bloating and gut rot and terrible C (which got MUCH worse after going off gluten). I did do the ELISA test and it found 5 things if I recall: sodium lauryl sulfate, yellow #5, sodium benzoate, mold, gluten. I was off all those things for 3 months with slight improvement. The stool sample showed morganelli and low bifidus and moderate yeast. My ND did not recommend anything for the morganelli but he gave me a bifidus supplement that did not do much but bloat me out more. In SC diet they recommend no Bifidus supplement because its easy to over grow it. I just ordered some lactobacilus acidophilous and I'm planning on giving the sc diet another try, I do believe I have an overgrowth of bad bacteria.

Congratulations on feeling better! It always gives me hope when someone finds answers!

Mia

Mia, did you make the yogurt? I plan to do that.

I did, I tried cow milk first and got "a lead suit" of tiredness from it, then I tried goat milk and the same happened. Today I just ordered dairy free lactobacillus acidophilus from Kirkman labs.

I did test positive for casein intolerance with enterolab so I am wondering if I won't be able to handle the yogurts but I have had no problem with the dry curd cottage cheese.

Are you on the sc diet? If so, how are you doing?

Mia

It could also be candida overgrowth.

I'm hoping the specifc carb diet will kill off all yeast and bad bacteria overgrowth. Thanks for the idea.

Mia

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Hi Mia, I think I will go on the diet. Gotta figure this yogurt thing out first. I have been eating plain Dannon Yogurt. Have always eaten yogurt. Use to make it in the sm. containers. They eat quite alot. I do think it is a good diet for getting that bad bacteria out. I am just learning about it. I have chicken soup brewing now. How did you make your yogurt?


Lee

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What other things did they recommend? I think as I remove things that bother my immune system they are slowly healing. Not there yet! I'm trying the sc diet again and hope it will do the trick. I also plan to get my mercury fillings out after I'm done nursing.

Mia,

The book talks about being in bed by ten, sleeping till 9 if you can, rest, lower stress, relaxing exercise only, eat several small meals per day featuring protein, breakfast by 10 at the latest, no refined carbs, no coffee or caffeine, no alcohol, no sugar. It goes into more detail, but those are the basics. Basically, you owe the "energy bank" so you have to repay your debt.

Carla


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi Mia, I think I will go on the diet. Gotta figure this yogurt thing out first. I have been eating plain Dannon Yogurt. Have always eaten yogurt. Use to make it in the sm. containers. They eat quite alot. I do think it is a good diet for getting that bad bacteria out. I am just learning about it. I have chicken soup brewing now. How did you make your yogurt?

I borrowed a friends yogurt maker and made it according to the book. I made it once with cows milk and bought some starter from online (recommended on pecanbread.com). Then I made a goat milk one. BOth gave me a lead suit of fatigue.

I actually quit the diet again yesterday. I don't know if I wasn't eating enough carbs or what but I was just STARVING constantly to the point of confusion and that just can't be good for a baby.

Good luck to you! I hope it helps, I sure believe it should.

Mia

Mia,

The book talks about being in bed by ten, sleeping till 9 if you can, rest, lower stress, relaxing exercise only, eat several small meals per day featuring protein, breakfast by 10 at the latest, no refined carbs, no coffee or caffeine, no alcohol, no sugar. It goes into more detail, but those are the basics. Basically, you owe the "energy bank" so you have to repay your debt.

Carla

That book sounds similar to the book I have "Adrenal Fatigue". I have followed those recommendations for about a year and a half and am still only about 50% better. Maybe it just takes a long time. Plus getting out anything that is bothering the immune system like the gluten and dairy. Planning on getting my mercury filling out after I"m done nursing the baby. (my hair has been falling out for a long time, could be due to that).

Mia

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If you're starving, for sure you weren't eating enough calories. It sounds like you've definitely got a problem with milk, and in my opinion, the scd diet would be very difficult without that.


Nothing

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Mia

That book sounds similar to the book I have "Adrenal Fatigue". I have followed those recommendations for about a year and a half and am still only about 50% better. Maybe it just takes a long time. Plus getting out anything that is bothering the immune system like the gluten and dairy. Planning on getting my mercury filling out after I"m done nursing the baby. (my hair has been falling out for a long time, could be due to that).

Mia

It does take a long time. The say if it doesn't take two years, you didn't really have adrenal fatigue.

I had my mercury filling taken out. Be sure you go to a dentist that specializes in it and gives you a supplement program.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I borrowed a friends yogurt maker and made it according to the book. I made it once with cows milk and bought some starter from online (recommended on pecanbread.com). Then I made a goat milk one. BOth gave me a lead suit of fatigue.

I actually quit the diet again yesterday. I don't know if I wasn't eating enough carbs or what but I was just STARVING constantly to the point of confusion and that just can't be good for a baby.

Good luck to you! I hope it helps, I sure believe it should.

Mia

That book sounds similar to the book I have "Adrenal Fatigue". I have followed those recommendations for about a year and a half and am still only about 50% better. Maybe it just takes a long time. Plus getting out anything that is bothering the immune system like the gluten and dairy. Planning on getting my mercury filling out after I"m done nursing the baby. (my hair has been falling out for a long time, could be due to that).

Mia

When I was on the SCD I was overcome with fatigue. I wanted to find out why because I thought I was eating enough on it. Then it hit me, no. 1.. I was cooking the fruit like they said and mixing it with yogurt. Well if I was going to go thru all that trouble of cooking fruit I made it my whole breakfast by eating a large enough portion that I didn't have to additionally eat eggs or protein since I didn't have the time. That was a mistake....it was to high in carbs. Cooking the fruit also broke down structures that speed-ed up time it took to get into my bloodstream. Ahh my hypoglycemia, I've been so used to eating a lot of fiber and protein that I didn't have those symptoms in a long time.

No. 2 I was eating a lot of carrots and bananas. I even ate dates only because I wanted to include all the permitted foods since its already so restricted. Those are all foods I can't eat because it raises my blood sugar levels and then I produce to much insulin for some reason. I think its my adrenals, I've lived a roller coaster life for so long. Anyway when that happens your left with extreme fatigue and crying spells were you feel emotionally drained.

I went off it and basically followed the diet Carla is talking about. I felt so much better.

If you haven't consider hypoglycemia as a culprit.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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