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
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.