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

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

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

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

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

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

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

Electra Enthusiast

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

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
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
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
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
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
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

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
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

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
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.

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.