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

Why Do I Feel Sick When I'm Eating Gluten Free?


Shelabel

Recommended Posts

Shelabel Newbie

I was recently diagnosed with non-celiac gluten intolerance. I have been eating gluten free but I have been getting sick lately. I have also been very tired (I have been taking 3 hour naps during the day for the past 4 days). I know that I am really sensitive but I have no clue what is triggering all this. Does anyone have any tips or advice on what I should do. I'v checked my toothpaste and have been using organic gluten free lotion but I don't know what else to do. Thank you! :)


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

What are you eating now that you weren't eating before?

mommida Enthusiast

It is possible that you are sensitive to some of gluten free replacement ingredients that you are eating now. I find that sorghum and I don't get along so well. Peas are known to be a higher reactive food. Pea starch is used in some of the gluten free products. Are you trying gluten free oats? For some Celiacs the protein chain is too similar and even gluten free oats are not tolerable.

Keep a food journal.

i-geek Rookie

I can't tolerate tapioca starch, which is in a LOT of gluten-free baked goods. That's something that might be newly added to your diet that is affecting you. There's also the possibility that you've had multiple food sensitivities for some time and you can only now detect the others once you've removed the primary problem. Also, are you eating enough to replace the calories/carbs that you normally consumed pre-gluten-free? If you don't keep a food journal, you might want to try it and see if you can correlate your symptoms to certain foods.

T.H. Community Regular

I'd agree that it could be something other than gluten, too. But if it IS gluten?

Been kissing anyone lately who wears lipstick? Lipstick and chapstick almost always has gluten, but we don't usually think of it when we're not the ones wearing it, eh? :D Makeup, powders, or anything that could be on someone ELSE'S skin might be an issue if you've been kissing it.

Drywall dust has gluten, shampoos, soaps, detergents, mouthwashes (maybe) - if it can get in your mouth accidentally, or it touches stuff that gets in your mouth (like the towels that dry your dishes), it might set you off, if you are particularly sensitive.

Or, again if you're sensitive, if you still have any wooden or plastic kitchen utensils, that could do it. They are porous to gluten, and can release it back into the food you are cooking. A cast iron skillet with old seasoning could do the same, unless you reseasoned it from scratch. Or a teflon pan, if scratched, is porous to gluten as well. So it could be your cooking implements rather than the food itself, too.

c.moriel Rookie

Watch closely for products manufactured in the same plant as glutenous foods( cross contamination). Example: after being gluten free for 3 weeks post-diagnosis, I picked up a bag of my favorite trail mix. The ingredients listed posted no threat. But, after eating the whole bag I felt quite sick. So I read the lable more closely and discover that I had eaten a rather large portion of contaminated soy nuts. Under the allergy information where "peanuts, tree nuts, soy" . . . etc were listed, was written something to the affect "Manufactured in a facility that also processes milk, eggs, and WHEAT"!! When in doubt, start from scratch and make it yourself. Good luck. hope you feel better

mushroom Proficient

We commonly expect we will feel much, much better as soon as we get the gluten out of our system. Unfortunately, it is not quite that easy. Gluten has done a lot of damage which has to heal. In the meantime, your gut is extraordinarily sensitive to many things, things that it may not be sensitive to later. Lactose is the common problem because gluten has destroyed the enzyme that digests it. When you heal, you should be able to resume eating lactose products as the enzyme is restored.

If you are replacing gluten items with gluten-free substitutes, you may be ingesting a lot of products that you are not used to. Soy is used extensively in gluten free products, and is often not well tolerated by celiacs. Same goes for some of the other gluten free substitute grains - if your damaged gut is not used to these grains it may rebel.

So you have to proceed cautiously at first and not add too many different things. One at a time is a sound approach and see how you react.

Also, once the gluten is gone we often find we have other intolerances that have been masked by the body having been overwhelmed by the gluten. Once the gluten is gone these intolerances are able to be perceived. It is often recommended to keep a food and symptom log to see if you can associate a response with a certain food. Again, the simpler you can keep your diet, the easier it is. Try to eat whole, unprocessed foods from the outside of the supermarket - meat, fish, fruits, vegetables, rice, nuts, seeds. Once you can stabilize on a diet that does not upset you then you add back in one thing at a time every three or four days and see how you respond. This way you can weed out the bad actors fairly quickly. Otherwise, it is a hit or miss process - I know, I have been there, and did not follow that advice I am giving you. :P

Good luck on your gluten free journey.


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



Celiac.com Sponsor (A8-M):



Mack the Knife Explorer

I am having the same problem. I have been gluten free for five months now and some of my digestive issues got a bit better after a month or so. But they didn't go away entirely and are now getting worse.

I saw my doctor this morning and she's sending me off to get a fructose test. Apparently Fructose malabsorption Open Original Shared Link is the most common digestive issue these days and my gluten issue may have been masking this problem. There are a huge range of foods that have too much fructose, ie wheat, most fruits, a lot of vegetables, wine, onion, garlic, tomatoes, brown rice, beans, legumes, artificial sweetners, etc, etc, etc. Some are worse than others and it's about the accumulated load of fructose throughout the day rather than an individual food. People's individual tolerances really vary too.

My doctor also said it could be gluten cc, IBS, or a specific food intolerance. So I'll be super careful about cc from now on and we'll just eliminate the other things one by one until we work it out.

In the meantime, I think I'll cut out all grains for a while. I have rather thrown myself headfirst into gluten free baking. So I am eating a lot of flours, grains, etc that I wan't eating prior to being diagnosed

chere1020 Newbie

I found when I tried to add in some non gluten grains that quinoa acts just like gluten for me, so anything that uses quinoa flour is a big no no for me. I also found that I have a problem with peanut butter in spread form. Yesterday I ate a lot of pineapple that is sugar coated and had a wicked reaction. The good news is once I react to it, I never want to see it again so that is out of my diet and I can afford to lose the weight right now (have lost 73lbs so far). So if you are sick still, I agree with the poster who said, eat fresh only for a while. Fresh fruit, veggies and meat and eggs and see how that works for you, if all your symptoms disappear on that diet, start adding things back slowly and keep track of what makes you sick. Once you get the hang of it, you will know what it is that does it because you wont want to eat it again.

Good luck

Looking for answers Contributor

It may not be diet related. I went through a very fatigued period last year and my homepathic doctor ran a adrenal fatigue test on me and found my cortisol to be extremely low. Also, my thyroid hormones were low as well. I'm finally feeling energetic after six months of treatment, new vitamins, and easier exercise then what I was doing before.

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. - Clear2me replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

    2. - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

    3. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,388
    • Most Online (within 30 mins)
      7,748

    Whirlwind acres
    Newest Member
    Whirlwind acres
    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

    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
×
×
  • 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.