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 I Could Handle This But....

sharkmom

Recommended Posts

sharkmom Apprentice
sharkmom
Posted

Been a week since going gluten-free. Kindof a fluke that I found out I have intolerance or possible celiac (along with dairy, soy, eggs). I always blamed gas, bloating, frequent bm with eating a lot of fruits and veggies. Type 1 diabetic so always ate a healthy diet and exercise daily, and always ate whole grain, high fiber carbs. Didnt think gluten-free diet would be a huge change but I think along with eliminating soy, dairy, & eggs too has me very depressed. Not to mention, I am so tired. I have no energy at all. I am not this person. I am always on the go and now it's an effort to do anything and I HATE IT!! I just want this to go away and I know it wont. I actually think I feel worse as the days go on and not better eliminating the gluten. Sorry, I have never felt like this and it has happened suddenly and really without warning.

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

Celiac.com Sponsor (A8-M):


LuvMoosic4life Collaborator
LuvMoosic4life
Posted

hang in there. it does get better. When I first started the diet my immediate symptoms went away, but then I started feeling worse...very tired, wierd bm's, constipation off and on...etc.. It was kind of a up and down battle until my body evened out. I think its like a shock to the body immediatly removing something we've been eating for so long...kinda like quiting cigarettes cold turkey.

I have been gluten free exactly a year and I am definitly feeling MUCH better and feel more on track. it took about 6 months for things to start to even out...but everyone is differant.

hannahp57 Contributor
hannahp57
Posted

most of us can understand what you're going through. it all hits you so suddenly and you dont realize how drastic a change it is until you actually cut those foods out. you will probably get your energy back but you may consider eating more protein to give yourself more energy. maybe nuts and more chicken? i dont know much about nutrition though so maybe someone will have better tips.

before i was finally diagnosed, i had completely stopped eating because the pain was so bad. when i found out i could start eating but just leave out the wheat i thought wow this will be easy. but that first grocery shopping trip...and the week seeing my family eat oreos and BREAD and stuff like that...it all added up fast. i know its discouraging but it gets easier once you're used to it. go to the baking forum and you'll find some good recipes and websites with gluten free dairy free and egg free recipes. hope it all gets better

shirleyujest Contributor
shirleyujest
Posted
Been a week since going gluten-free. Kindof a fluke that I found out I have intolerance or possible celiac (along with dairy, soy, eggs). I always blamed gas, bloating, frequent bm with eating a lot of fruits and veggies. Type 1 diabetic so always ate a healthy diet and exercise daily, and always ate whole grain, high fiber carbs. Didnt think gluten-free diet would be a huge change but I think along with eliminating soy, dairy, & eggs too has me very depressed. Not to mention, I am so tired. I have no energy at all. I am not this person. I am always on the go and now it's an effort to do anything and I HATE IT!! I just want this to go away and I know it wont. I actually think I feel worse as the days go on and not better eliminating the gluten. Sorry, I have never felt like this and it has happened suddenly and really without warning.
Cinnamon7778 Rookie
Cinnamon7778
Posted

please hang in there! I believe that it will get better. Prior to becoming ill but unaware of having celiac disease, I was very athletic. I jooged 35 to 40 miles aweek, studied martial arts, cardio workout etc. However after becoming ill everything came to a screeching halt. I became a vegan 3 years aog because I experienced alot of symptoms which at times required hospitalization and shots. I miss my old way of living. However, I have to deal with right here and now. I just recently as a vegan began the wheat, gluten and soy free diet and its hard. I went to Barnes and Nobles to purchase a book of receipes that's related to the above and the sales clerk looked at me like wow your a vegan and you still have food issues. But you know what I trust and believe that its going to be okay and most importantly that I'll be healthier than I've ever been and so will you and the many others who are dealing with celiac disease. Stay blessed and encouraged please!

Been a week since going gluten-free. Kindof a fluke that I found out I have intolerance or possible celiac (along with dairy, soy, eggs). I always blamed gas, bloating, frequent bm with eating a lot of fruits and veggies. Type 1 diabetic so always ate a healthy diet and exercise daily, and always ate whole grain, high fiber carbs. Didnt think gluten-free diet would be a huge change but I think along with eliminating soy, dairy, & eggs too has me very depressed. Not to mention, I am so tired. I have no energy at all. I am not this person. I am always on the go and now it's an effort to do anything and I HATE IT!! I just want this to go away and I know it wont. I actually think I feel worse as the days go on and not better eliminating the gluten. Sorry, I have never felt like this and it has happened suddenly and really without warning.
OptimisticMom42 Apprentice
OptimisticMom42
Posted

Find some legal foods that make you feel like you are getting away with something! :D When I was a kid, my mom would sometimes look the other way when I fed my hotdog bun to the dog! so eating gluten free brats without bread feels good. Also because we had a large family and fruit was expensive we were only allowed one peice of fruit a day. Now I eat a whole bowl of it... two bananas a day if I want....enjoy life chocolate chips and marshmellows in my coffee! And there are alcoholic beverages that are gluten free. I haven't explored those yet but jello shots come to mind! B)

sharkmom Apprentice
sharkmom
Posted
  • Author

Thanks for your replies. I am just surprised how lousy I am feeling, but I am trying to act as normal as possible and fight through the fatigue and be active like before. Haven't drank alcohol since the holidays, but might have a few this weekend. ;)

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

Celiac.com Sponsor (A8-M):


TotalKnowledge Apprentice
TotalKnowledge
Posted

I greatly reduced my gluten intake on the 3rd, and quit completely about mid day on the 5th. With the possible exception of when I ate out at a restaurant have not had any gluten. I seem to be rotating through various chronic problems, but am having them one at a time rather than together.

As a whole though I feel much better. My muscle fatigue and exhaustion have gone away. Even though I have been more tired at times, it is a different kind of tired.

I am rather optimistic however, and I would say stick it out for a while. Did you go cold turkey on all the things at once? It could be part of what is effecting you so much. Theoretically you should start feeling better soon. Hang in there :D

LDJofDenver Apprentice
LDJofDenver
Posted

Just wanted to post a link for you for a mainstream grocery shopping guide, this one is Gluten, Casein and Soy Free products:

Open Original Shared Link

I have one that is just for gluten free products, and it made a huge difference in my shopping life, let me tell you. They're about $25 but worth it. I had no idea so many mainstream products were OK. If you search online, you can find other gluten-free shopping guides, but I'm not sure how many also have the casein and soy free as well.

It really does get easier, promise. In a couple months you'll have a good handle on haves and have nots. Like any significant change in your life, it takes a little time at first. Before you know it, it will be old hat.

Hang in there.

ang1e0251 Contributor
ang1e0251
Posted

Sorry you're feeling so bad right now. As others have said, hang in there. In the meantime you can look over your vitamin intake and make some changes that will help. In the energy department the sublingual B12 (methyl type) really helped me. You can't take too much, extra will just wash away so take what you need. Increase your magnesium, athletes especially need extra.

I agree with the suggestion of increasing your protein. Along with that make sure you're getting enough dietary fat. Now's not the time to eat low fat. Your muscles, including your heart muscle, need dietary fat to function. Nuts, avocados are both good sources along with meat.

See if this helps get you through the transition. It feels so hard in the beginning, but I promise you will feel better down the road.

Korwyn Explorer
Korwyn
Posted
Been a week since going gluten-free. Kindof a fluke that I found out I have intolerance or possible celiac (along with dairy, soy, eggs). I always blamed gas, bloating, frequent bm with eating a lot of fruits and veggies. Type 1 diabetic so always ate a healthy diet and exercise daily, and always ate whole grain, high fiber carbs. Didnt think gluten-free diet would be a huge change but I think along with eliminating soy, dairy, & eggs too has me very depressed. Not to mention, I am so tired. I have no energy at all. I am not this person. I am always on the go and now it's an effort to do anything and I HATE IT!! I just want this to go away and I know it wont. I actually think I feel worse as the days go on and not better eliminating the gluten. Sorry, I have never felt like this and it has happened suddenly and really without warning.

One of the things you may also be dealing with is bacterial imbalance, especially if you have ever had any antibiotics. I would suggest you make sure that you are getting good protein, raw honey (no refined sugar), lots of non-starchy veggies, plenty of ripe fruit, and take a good mixed probiotic like PB-8 or Multibiotic-10. Keep on that for about 6 weeks.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.