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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.