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

Feeling Awful ; Thinking About Going Back

betterbelly

Recommended Posts

betterbelly Rookie
betterbelly
Posted

OK

This friday; I'll be gluten free for 2 months. What did happen was that all gas/distended belly and overall uncomfortablness left immediately :) but; starting w/ christmas eve; everything went downhill... Ate bread crumbs by accident - Diarrhea; bad stomach pretty much until 2 days ago; but not until I had a total break down; throwing up; nausea and now my stomach is so sensitive its killing me. My heart feels racey= like i have a fever; but I don't and no it's not panic attacks. I cut out lactose and I don't know what to do; but I just feel like my body is now not tolerating this diet; im losing a lot of weight too... (I'm 5'7 and started at 140- now 130) ANY help is greatly appreciated. And if anyone knows how to reintroduce gluten back ie... what incriments; please post. I am still waiting on blood test about Celiac; but I know the likelyhood of that coming back inconclusively. Thanks in advance and sorry for long post!!! :o

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

Celiac.com Sponsor (A8-M):


Nancym Enthusiast
Nancym
Posted

Putting gluten back isn't going to help you. It sounds like you have an infection of some sort, you need to see a doctor.

tarnalberry Community Regular
tarnalberry
Posted

You ate gluten and got sick - adding in more gluten isn't going to make you feel better. Nancy noted, you may also have caught a bug. But up until you 'poisoned' yourself (gluten is essentially a poision to us) you seem to imply that you were doing better. Don't waste that knowledge! Stick to plain, natural foods for the moment (and it can be tough figuring out what your stomach will handle), until you're feeling better. Make sure that *all* gluten is out of your diet, as well.

celiacgirls Apprentice
celiacgirls
Posted

It is true that when you go gluten-free, your body sometimes loses its tolerance for even tiny amounts of gluten, making you feel worse than before. But that must mean you really do have an intolerance.

The effects can last a long time, too. For me, my last one lasted 2 1/2 weeks.

You must have felt pretty bad in the beginning to make such a big change in your diet so once you get the hang of it, you will be better off.

From my own experience, I'm not sure I could add gluten back in any increments. I've gotten sick from cc and it was intolerable.

Electra Enthusiast
Electra
Posted

I don't understand why you would want to introduce gluten back into your diet. If you only ate breadcrumbs and had that kind of a reaction and are still feeling the effects then you should definitely NOT eat gluten again!! I've only been gluten free for about 3 weeks, but when I am glutened I can tell within a few hours and it lasts me almost a week. The symptoms very from day to day, but my entire household can tell a difference and I feel like complete CRAP!!

If you felt better off from gluten then I would see no reason to try and put it back into your diet.

betterbelly Rookie
betterbelly
Posted
  • Author

I did go to a doc and they took blood and poop samples... thanks for the replies!

Electra Enthusiast
Electra
Posted

I hope you feel better soon and let us know how it all goes.

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

Celiac.com Sponsor (A8-M):


lonewolf Collaborator
lonewolf
Posted

I'm not sure I understand either. You've been sick enough to try a gluten free diet, you started feeling better ("all gas/distended belly and overall uncomfortablness left immediately"), you ate a little bit of gluten accidentally over Christmas and got sick again and now you think you should go back on gluten? Why? You've had a positive dietary response, which means that eating gluten-free is helping you. Why do you want to go back to eating something that you know makes you sick?

betterbelly Rookie
betterbelly
Posted
  • Author
I'm not sure I understand either. You've been sick enough to try a gluten free diet, you started feeling better ("all gas/distended belly and overall uncomfortablness left immediately"), you ate a little bit of gluten accidentally over Christmas and got sick again and now you think you should go back on gluten? Why? You've had a positive dietary response, which means that eating gluten-free is helping you. Why do you want to go back to eating something that you know makes you sick?

My stomach never felt this bad though... is it possible to have problems from Not eating wheat?

Nancym Enthusiast
Nancym
Posted
My stomach never felt this bad though... is it possible to have problems from Not eating wheat?

In a word, no. Humans have been around for many hundreds of thousands of years and we've only been eating wheat for about 7,000. So it would seem quite possible to survive without it.

ravenwoodglass Mentor
ravenwoodglass
Posted
OK

This friday; I'll be gluten free for 2 months. What did happen was that all gas/distended belly and overall uncomfortablness left immediately :) but; starting w/ christmas eve; everything went downhill... Ate bread crumbs by accident - Diarrhea; bad stomach pretty much until 2 days ago; but not until I had a total break down; throwing up; nausea and now my stomach is so sensitive its killing me. My heart feels racey= like i have a fever; but I don't and no it's not panic attacks. I cut out lactose and I don't know what to do; but I just feel like my body is now not tolerating this diet; im losing a lot of weight too... (I'm 5'7 and started at 140- now 130) ANY help is greatly appreciated. And if anyone knows how to reintroduce gluten back ie... what incriments; please post. I am still waiting on blood test about Celiac; but I know the likelyhood of that coming back inconclusively. Thanks in advance and sorry for long post!!! :o

You body is clearly telling you that it does not want gluten, please do not go back on it. Figure out what it is that is getting you. Are trying to eat mainstream foods, if so you may want to go to eating foods that are less processed. Are you still consuming alcohol, many of us do not tolerate grain alcohols even though many do. Have you deglutened your home? After getting gluten out of your system you may be reacting to CC. Have you eliminated it from shampoos, toiletries and such? If not now that you are not eating it that may be enough to cause a reaction. Please don't give up, it takes a while to learn the ins and outs of this lifestyle.

betterbelly Rookie
betterbelly
Posted
  • Author
You body is clearly telling you that it does not want gluten, please do not go back on it. Figure out what it is that is getting you. Are trying to eat mainstream foods, if so you may want to go to eating foods that are less processed. Are you still consuming alcohol, many of us do not tolerate grain alcohols even though many do. Have you deglutened your home? After getting gluten out of your system you may be reacting to CC. Have you eliminated it from shampoos, toiletries and such? If not now that you are not eating it that may be enough to cause a reaction. Please don't give up, it takes a while to learn the ins and outs of this lifestyle.

Raven

thanks for the words of encouragement. I have been mainly eating at home; and am vigilent about checking labels. I will let you know and thank you for your help!!!

Jprock Newbie
Jprock
Posted
OK

This friday; I'll be gluten free for 2 months. What did happen was that all gas/distended belly and overall uncomfortablness left immediately :) but; starting w/ christmas eve; everything went downhill... Ate bread crumbs by accident - Diarrhea; bad stomach pretty much until 2 days ago; but not until I had a total break down; throwing up; nausea and now my stomach is so sensitive its killing me. My heart feels racey= like i have a fever; but I don't and no it's not panic attacks. I cut out lactose and I don't know what to do; but I just feel like my body is now not tolerating this diet; im losing a lot of weight too... (I'm 5'7 and started at 140- now 130) ANY help is greatly appreciated. And if anyone knows how to reintroduce gluten back ie... what incriments; please post. I am still waiting on blood test about Celiac; but I know the likelyhood of that coming back inconclusively. Thanks in advance and sorry for long post!!! :o

I don't know if you smoke, but just this past weekend I figured out that it was smoking that was making me sick after three months gluten-free and feeling pretty good. I was off work over the holidays, and I smoke more when I'm home. At first, I couldn't figure out what was making me sick until I did some research. Sure enough, there is, or can be, gluten in cigarettes. So, after giving up gluten, casein and soy, I'm now going to give up cigarettes. I've never had this much motivation.

Aerin328 Apprentice
Aerin328
Posted

Celiac disease is a long-term illness that requires long-term healing. If you just went off gluten 2 months ago your body is probably still in quite a tizzy, and even more sensitive to gluten than before. I've read in a couple places it takes 1-2 years for the antibodies to leave the blood and for the immune system to break its self-traumatizing cycle... and as much as this figure seems disheartening, please be assured that it DEFINITELY gets WAY BETTER as time passes. Don't give up hope! Be patient! Going gluten-free is an incredibly difficult challenge - but a necessary one. One that you'll be ecstatic you did in the long run. Right now, I can understand your unsurity. Just hang on! And whenever you waver, we will all be here to support.

God bless,

Christian

ravenwoodglass Mentor
ravenwoodglass
Posted
Sure enough, there is, or can be, gluten in cigarettes.

Unfortunately this is true for some brands. We switched to American Spirit which is an additive free, just tobacco cig. The first one seemed different but the change was effortless and both me and my DH smoke much, much less without even trying. Some brands I always just about chain smoked, it makes me wonder if the addictive nature of the gluten additives had something to do with it.

eleep Enthusiast
eleep
Posted

I think it's important not to rule out the possibility that these can be withdrawal-type symptoms -- gluten is an opiate and the racing heart and stomach stuff can be part of withdrawal as well. I went through something much like this for a few months when I went gluten-free.

I also quit smoking recently myself and the one time I've been glutened since then is when I've had cigarette cravings like never before.

ravenwoodglass Mentor
ravenwoodglass
Posted
Raven

thanks for the words of encouragement. I have been mainly eating at home; and am vigilent about checking labels. I will let you know and thank you for your help!!!

I am glad your checking labels but please be aware that not all companies will tell you about crosscontamination issues and non wheat gluten can be hidden in flavors and seasonings. Especially at first it is a good idea to call and ask about any new item.

Also when you make a purchase of an item that is labeled gluten free be sure to look and see if they make gluten containing items also. A dedicated facility would be nice, complete labels would be nice but unfortunately that is still a ways off. I hope your feeling better and really hope you don't give up. It takes time to heal and sometimes even more time to ferret out sources of gluten CC but it is so worth it in the end. And as another poster mentioned the withdrawl can be hard both emotionally and physically but you will get through it.

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I apologize. Obviously I've confused you with someone else. I have vision problems due to undiagnosed Celiac complications. Being legally blind, y'all look the same from here. You still have not said which new medication you started taking. Parathyroid disorders can affect antibody production. Bone Loss Correlated with Parathyroid...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    5. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
×
×
  • 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.