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

Bad Side Effects On Gluten Free Diet.


Leeis2k

Recommended Posts

Leeis2k Newbie

Everytime i go on a Gluten free diet i feel drained and my back kills me, mostly my spine. It feels like maybe im missing something that i get during my normal diet that im not getting in my gluten free diet. Like carbs or something that i need, does anyone have any idea?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

What are you eating when you go off gluten? It is best to stick with meats, veggies, fruits, beans, rice, potatoes etc at first. Are you consuming the specialty gluten free foods? Many of those have soy, which can be an issue for some of us and they often have things like bean flour and sorghum that we are not used to eating and may be intolerant to. It is best to go with whole naturally gluten free foods at first.

You also may be experiencing withdrawl. It can take different forms. Many get moodier but the possiblity of some type of increase in pain could, I think, be possible.

GlutenFreeManna Rising Star

You will feel drained and more tired for the first week or two. You body may be going through withdrawal symptoms and it takes a lot of energy to heal. Many people report they sleep more when they first go gluten free. If you try it for several months and you are still feeling run down then maybe you are missing some vitamins you need. Have your doctor check thyroid as well as iron levels, and Vitamin levels.

Kim27 Contributor

Everytime?? There should just be OnE time ! You would feel much better if you Hung in there, stayed gluten-free & got over the hump. Quit going back to gluten or you'll never feel the good effects of it. I felt kinda crappy about 2 weeks after gluten-free, but it DOES go away. Afterall, completely changing your diet is a big change ! Hang in there & it'll be worth it...

Leeis2k Newbie

Thanks for the reply's everyone. Its really funny how this seems to work for me. Yes i did go off soy and im eating nothing but gluten free foods. But what i also tried was getting some foods with a little bit of gluten in it like tomato soup for 3 days or so then switched back to gluten free and felt GREAT. But im sure that can't be healthy.

What it seems like to me there's a vitamin in wheat that im lacking in the gluten free diet. i just have no idea what it could be.

GlutenFreeManna Rising Star

Thanks for the reply's everyone. Its really funny how this seems to work for me. Yes i did go off soy and im eating nothing but gluten free foods. But what i also tried was getting some foods with a little bit of gluten in it like tomato soup for 3 days or so then switched back to gluten free and felt GREAT. But im sure that can't be healthy.

What it seems like to me there's a vitamin in wheat that im lacking in the gluten free diet. i just have no idea what it could be.

It sounds like you have yet to go completely gluten free. You can't do it for just a few days and feel better. You can't "cheat" by having things like tomato soup with just a little bit of gluten and feel better. A little bit of gluten is like a little bit of poison if you have celiac or gluten intolerance. It is also like a drug for some and you body is going to be going through a withdrawal process. Would you give an drug addict a little bit of cocaine? Also what "gluten free foods" are you eating when you go gluten free? Are you eating a lot of processed gluten-free foods or are you eating whole foods that are naturally gluten free. You should do a whole foods diet to start with because you may be intolerant to some ingredients used in gluten free packaged foods. There is also a bigger risk of cc the more packaged foods you consume.

Tina B Apprentice

Everytime i go on a Gluten free diet i feel drained and my back kills me, mostly my spine. It feels like maybe im missing something that i get during my normal diet that im not getting in my gluten free diet. Like carbs or something that i need, does anyone have any idea?

The others are correct, you can't only do it for a few days and expect results. Also, Rice, Corn and potatoes are carbs.


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



Celiac.com Sponsor (A8-M):



Leeis2k Newbie

I never said i wasn't on the diet for a long time before i tried something with Gluten. I was Gluten free for 4 months and i was just getting worse then ate the soup and felt better for a short time.

Its almost like when i go gluten free i heal, then my body can absorb whatever it is i need from wheat/gluten.

ravenwoodglass Mentor

I never said i wasn't on the diet for a long time before i tried something with Gluten. I was Gluten free for 4 months and i was just getting worse then ate the soup and felt better for a short time.

Its almost like when i go gluten free i heal, then my body can absorb whatever it is i need from wheat/gluten.

There is nothing, absolutely nothing that you would be getting from wheat or gluten that can not be found in other foods like rice, potatoes etc. I am wondering if your having CC issues from someplace like your cosmetics, shampoos, do you have a pet and feed it gluten food (some of us need to make our pet gluten-free). do you have a significant other that you kiss who eats gluten, if so they need to brush their teeth before you get intimate.

Has your doctor run vitamin and mineral panels on you? If not that should be done to make sure you are not anemic or don't have another deficiency going on.

If you were gluten free for 4 months and then started feeling worse you need to look at what changed. Sometimes we can get glutened in the most surprising places. Things like playdoh, if you have kids, drywall compound if your remodeling, arts and crafts supplies etc can all be sources of CC.

Leeis2k Newbie

There is nothing, absolutely nothing that you would be getting from wheat or gluten that can not be found in other foods like rice, potatoes etc. I am wondering if your having CC issues from someplace like your cosmetics, shampoos, do you have a pet and feed it gluten food (some of us need to make our pet gluten-free). do you have a significant other that you kiss who eats gluten, if so they need to brush their teeth before you get intimate.

Has your doctor run vitamin and mineral panels on you? If not that should be done to make sure you are not anemic or don't have another deficiency going on.

If you were gluten free for 4 months and then started feeling worse you need to look at what changed. Sometimes we can get glutened in the most surprising places. Things like playdoh, if you have kids, drywall compound if your remodeling, arts and crafts supplies etc can all be sources of CC.

No, I'm 100% sure man. The bad feeling i have on the gluten-free diet feels much different then when I'm on Gluten. When I'm on gluten-free diet its far less brain fog, Less chest pressure and less anxiety but more of a drained vitamin lacking feeling(and yes I'm on a few vitamins 100% gluten free) and back pain.

On Gluten i have all those things full blown other then the back pain and the drained feeling. Yet when i did the gluten-free then ate something small with gluten changed back i better then i ever felt in my life.

I also am reading Gluten has a special type of protein and that may be the one thing im lacking.

sb2178 Enthusiast

So, are you celiac? Gluten intolerant? Have you had any follow-up bloodwork since your diagnosis? If your bloodwork is still abnormal, you probably aren't actually gluten-free and need to eliminate other exposures. You can see a dietician or nutritionist to determine if your diet does lack something (grains have things like B vitamins, fiber, etc) that you formerly got from wheat but are not getting from your substitute foods.

There is a rare, rare thing called refractory celiac sprue, but it's far more likely that you just have some source of exposure and/or other health issues like hypothyroid or nutrient deficiencies. Magnesium, vitamin D, calcium (parathyroid hormone) are all things related to bone metabolism that might be checked for the "spine pain." Depending on age, you can check into getting a bone density scan, as you coul dhave problems with compression fractures that are causing pain... etc. Lots of options to explore, so talk to your doctor!

GlutenFreeManna Rising Star

Maybe if you gave us some more details about your situation we would be able to help you figure it out better. Are you a diagnosed celiac? Gluten intolerant? Or did you just decide to do the diet?

What do you eat on a regular basis on a "gluten free diet"?

What vitamins do you take?

Have you had any testing for vitamin deficiencies?

Do you have any other medical conditions?

T.H. Community Regular

Another possibility is that you are reacting to something that is more common in gluten-free foods.

I never had any gut issues, no known food allergies, before going gluten free. Felt worse AFTER going gluten free. Turns out, I have issues with some of the foods that are in gluten-free foods. One was sugar cane - it's typically less processed, it's added to EVERYTHING that's gluten-free, even the soup! But less processed means that you get more of the allergen, so it was making me really sick. I actually react to EVerything in the grass family, sugar cane, rice, you name it!

And corn. When I have corn, my back kills me too! my carpal tunnel flares up, my back and neck hurt, I feel exhausted and out of it. And corn is in a lot more gluten-free foods, as well as everything else (iodized salt, baking powder, you name it. You have to google corn allergies to hunt down everything it's in).

GI said that sometimes, the reactions from gluten mask other reactions you had to other foods, so that they show up more once you go gluten free. Don't know if that's the case, but it might be worth cutting down your foods to one ingredient ones for a week or two, rather than pre-made stuff, and keeping a food log to see if anything tracks with your symptoms. :)

Good luck!

missceliac2010 Apprentice

Hello!

I too think that the people here can help you better if you give them all the background info first. My first post was very recently, and I swear it was more like a novel! I apologized for the length, but I got wonderful and helpful replies! Their is a wealth of knowledge and advice here on this site if you use the tool right.

That said, with the info given so far, S... I love your response and agree 100%. I have been so frustrated with accidental glutening over the past week that I wanted to scream! Today I vowed that I would eat simple, 1 ingredient foods. Guess what? I felt great all day! I will add more complex items that I enjoy eating one at a time, so I can start to pinpoint my allergies.

It seems cruel to know that not only do I have Celiac disease, but also food allergies?! But then again, I could have a much worse diagnosis. In the long run, Celiac is a totally manageable, do-able disease, if you have to get hit with one!

Good luck!

Another possibility is that you are reacting to something that is more common in gluten-free foods.

I never had any gut issues, no known food allergies, before going gluten free. Felt worse AFTER going gluten free. Turns out, I have issues with some of the foods that are in gluten-free foods. One was sugar cane - it's typically less processed, it's added to EVERYTHING that's gluten-free, even the soup! But less processed means that you get more of the allergen, so it was making me really sick. I actually react to EVerything in the grass family, sugar cane, rice, you name it!

And corn. When I have corn, my back kills me too! my carpal tunnel flares up, my back and neck hurt, I feel exhausted and out of it. And corn is in a lot more gluten-free foods, as well as everything else (iodized salt, baking powder, you name it. You have to google corn allergies to hunt down everything it's in).

GI said that sometimes, the reactions from gluten mask other reactions you had to other foods, so that they show up more once you go gluten free. Don't know if that's the case, but it might be worth cutting down your foods to one ingredient ones for a week or two, rather than pre-made stuff, and keeping a food log to see if anything tracks with your symptoms. :)

Good luck!

Leeis2k Newbie

Thanks to everyone again for all the reply's. The back pain has went away for the most part after taking some vitamin D. I'm starting to believe its a Zinc deficiency. After reading the foods that have Zinc in them, i realized that i getting NO Zinc in any of my foods. it would make sense because Wheat has Zinc in it and when my intestines healed it absorbed it and made be feel better (whlie also doing damage. Also my sex drive has been totally gone and that would also mesh with this theory.

I'm praying this is the answer, I've been fighting this for years and without insurance its been 100x tougher because doctors could careless about you if they don't get paid.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    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

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.