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

Developing Food Allergies After Being Gluten Free


sweetsailing

Recommended Posts

sweetsailing Apprentice

Well, I have been gluten free for nearly 8 months now and GI system is working just fine.  For the last couple of months it seems like I have developed some sort of allergy, likely to food.  At first, we thought I had oral thrush.  3 different medications later and nothing has changed.  Not likely thrush.  Now, I am thinking this is some sort of food allergy, however I have yet to figure out to what. 

 

My symptoms are:  thickening in my throat, dry throat, hurts to swallow, mouth and tongue burning, tongue swelling, burning lips if it gets bad enough, sometimes itchy eyes.  I have been having these symptoms nearly everyday, although some days are better than others. 

 

I can't for the life of me figure out what it is that I am eating that is causing this.  I am pretty sure it is some sort of allergy because I tried taking zyrtec and it made the symptoms better. 

 

I started a food and symptom log to try to figure it out and have started elminating things from my diet. 

 

Questions - I know its common for celiac's to have other food issues.  However is it typical that it shows up after this long being gluten free?

 

How did you figure out your food allergies/intolerances?


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



Celiac.com Sponsor (A8-M):



greenbeanie Enthusiast

This sounds very similar to my story! I'd been gluten-light for years, and did a six-week gluten challenge before celiac testing. My tests were negative for celiac (but only a few biopsies taken so it's not really clear how much to trust the results) but I had all sorts of other inflammation in my stomach and esophagus, and the GI recommended a strict gluten-free diet anyhow. My daughter was diagnosed with celiac around the same time, so we've been very careful. Anyhow, my tongue, throat, and lymph nodes in my neck started swelling up almost every time I ate during the gluten challenge, and this continued but got even worse for a while after stopping gluten. It was baffling because all my other symptoms (neurological, GI, and skin symptoms) improved hugely and kept improving, after going gluten free. After much ado - including dozens of allergy tests, a CT scan of my neck, Sjogren's tests, and other stuff - it turns out that the problem was sulfites. I was inadvertently making the sulfite problem worse after eliminating gluten, since I'd started eating more dried fruit and nut bars and gluten-free baked goods with sulfited potato flour in them.

I react strongly to even tiny amounts of naturally-occurring sulfites in foods. They give me pretty classic allergy symptoms - immediate coughing, itchy eyes, runny nose, and burning feeling in my mouth. These reactions continue even if I am eating nothing at all with preservatives or any form of sulfites in the ingredients list. Anything fermented will cause my tongue to swell and become painful - anything with vinegar (even the tiny amount of vinegar in mustard and other condiments), hard cheese and yogurt, anything with dried fruits or jellies, anything with pectin or gelatin or lemon juice from concentrate, many dried herbs and spices, fresh grapes and pork, etc. Also anything with xanthan gum, potato starch flour (found in many, many gluten-free baked goods and flour mixes), corn starch, corn syrup, anything with tomato paste, and other processed foods. Probiotics also turned out to be a problem for me (because of the fermentation, I guess), though I tolerate some single-strain brands at low doses. Wine is also very high in sulfites, though I didn't drink that anyway. If sulfites are used as part of the manufacturing process (to prevent browning or to prevent the rusting of pans used to process canned vegetables) or bulk ingredients come to the manufacturer already sulfited, my understanding is that they don't have to be declared on labels in the U.S.

The tongue swelling was very scary, and got worse pretty quickly. It is incredibly hard to avoid all foods with sulfites, but once I figured out the problem the swelling and pain decreased noticeably within a few days. It's still not completely gone after several months on a low-sulfite diet, but I do give in and have salad dressing once in a while. I cannot tolerate any gluten-free baked goods, even homemade ones, if they contain potato starch flour or xanthan gum. Guar gum seems okay on occasion. I've taken a daily antihistimine for years, and I've been able to back off to taking it every other day now that I've cut way down on sulfites.

Anyhow, I hope this isn't your problem, since it leads to a very restrictive diet. However, it's definitely worth looking into. There is no blood test for it, which is why my allergist never brought it up amidst this whole battery of other tests she ran when the tongue swelling started. If you try strictly eliminating sulfites (including probiotics and any other supplements that contain fermented ingredients) for a few days, I think you'd know pretty quickly if it was helping. Good luck!

Edited to add: Here are a couple of websites with lists of food containing sulfites -

Open Original Shared Link

Open Original Shared Link

NatureChick Rookie

One of the symptoms of severe B12 deficiencies is a burning sensation in your mouth. It would come and go depending on what you are eating, but not in the way you are thinking.

If this were your problem, yes, a deficiency created by malabsorption issues before going gluten-free could linger or get worse 8 months after going gluten-free, especially if you don't have a lot of animal-sourced food in your diet, have a lot of stress, or exercise vigorously as these last two will deplete B12 stores.

I'm less familiar with allergies.

sweetsailing Apprentice

Thanks guys.  NatureChick -  I have a new physician who is excellent and she had already suggested the B12 deficiency and tested me for that.  I don't have the results yet, so we will see what that shows.  Good thinking!

 

greenbenie - I really hope it's not sulfites...sigh...however, I already know that mustard seems to be an issue for me as well as relish, so I already have avoided those things.  When this first started and I thought it was thrush, I was rinsing my mouth with apple cider vinegar.  I guess if it ends up being sulfites I guess that would have been about the worse thing I could have done.  One day recently, I ate some store bought guacamole.  I took one bite and grabbed my mouth and practically took it back out.  My reaction was quite immediate and it may as well have been battery acid, is how it felt. 

GFinDC Veteran

Here's some info on another possibility.

 

Open Original Shared Link

kareng Grand Master

Sounds like an allergy.  Maybe you are eating a lot more of something than you did before?  For example - xanthum gum is in a lot of gluten-free baked foods and not as much in other foods.  Or you used to eat rice once a month but now are eating it twice a week and gluten-free crackers, pastas, etc may contain rice.  Just a couple of examples.

 

You may need to find a few simple foods that don't give you that reaction.  Then add foods with them - if you get the reaction - that new food is probably your culprit.

StephanieL Enthusiast

Have you looked into Oral Allergy Syndrome?  Have you been eating a lot of fa fruit lately? That's often an OAS trigger.


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



Celiac.com Sponsor (A8-M):



sweetsailing Apprentice

Well, I think I figured out something.  Not everything, seems like it's not just one food.  I can tell you I am reacting to bananas.  Go figure...I tested the theory today and ate a banana after not eating them for about a week.  Yes, I am reacting to them.  However, in the week that I didn't eat bananas my symptoms were not entirely gone and it seems like I am also reacting to other things as well. 

 

Ugghhh...does anyone else have one of these days...I feel like I can't eat anything.

LauraTX Rising Star

Reading through this with the guacamole and now you mentioning bananas makes it sound very much like you may have some kind of allergy to that family.  Are you allergic to latex?  A lot of people with latex allergies can't have bananas, avocado, kiwis, and vice versa.  These fruits and some others contain similar compounds to each other, and also that of latex.  Latex allergies can be very delayed, in the health care field where I work, they really make a big deal of it, even disallowing latex balloons in the hospital where I worked.

 

Here is a good place to start reading on it:  Open Original Shared Link

sweetsailing Apprentice

Thanks for all the help and advice.  StephanieL, I think you might be on to something with the OAS.  NatureChick, my B12 level came back just fine, so that is off the table.  LauraTX, I was looking into the latex allergy as well.  I don't know that I am allergic to latex but I don't know that I have recently been exposed to latex either.  I am a nurse and worked in a hospital setting for many years (now I work in the business world), so I do know that healthcare workers are at higher risk for developing latex allergies. 

 

Over the last week or so, I have confirmed that I am reacting to the following:  bananas, avacados, almonds and likely paprika. 

 

Now that I have a bit more information, I am going to make an appointment with the allergist and get this sorted out and confirm what I am allergic to.  I just needed some information to at least share with them.  Thanks for all your help and advice in figuring this out.

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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

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

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.