Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thought The Scd Was Going To Cure Me


Mia H

Recommended Posts

Mia H Explorer

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Have you been tested for allergies, vitamin deficiencies etc?

Congratulations on the upcoming little one next year! :D

heathen Apprentice

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!

kbtoyssni Contributor

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.

CarlaB Enthusiast

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.

Mia H Explorer

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.

CarlaB Enthusiast

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



burdee Enthusiast

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: Open Original Shared Link

BURDEE

lindalee Enthusiast
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.

TinkerbellSwt Collaborator

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!!

loraleena Contributor

It could also be candida overgrowth.

Mia H Explorer
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: Open Original Shared Link

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

lindalee Enthusiast

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?

CarlaB Enthusiast
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

Mia H Explorer
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

eKatherine Apprentice

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.

CarlaB Enthusiast
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.

bluejeangirl Contributor
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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748

    volivier
    Newest Member
    volivier
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.