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

Allium Intolerance Really Celiac Disease?

Jerseybean

Recommended Posts

Jerseybean Newbie
Jerseybean
Posted

Hi all, 

 

Just looking for a bit of knowledge and/or confirmation from you experienced folks!

 

I've had a lifelong reaction to garlic, but didn't realise I was actually intolerant to garlic until I was mid teens. I then didn't realise that all of the onion family affect me very badly until I was 27! By this point my symptoms (extreme bloating, acid reflux, mouth ulcers, abdominal pain, IBS) were near constant, my reaction to the onion family had gotten worse and worse over time. I had also developed GERD so then had to exclude a whole array of other foods from my diet. (tomatoes, peppers, alcohol, citrus or anything acidic, etc)

 

I have a family history of gallbladder problems, IBS and Crohn's disease. Although neither of these things are strongly suspected in me.

 

I've had numerous blood tests for a variety of things, including calprotectin (negative) and the blood test for celiacs (also negative). I am not anaemic either. I was on Omaprazole for 12 months (worked a bit) and Ranitidine for 6 months (Not very good at all...)

 

After waiting 18 months!!! I finally had a gastroscopy yesterday...

 

Apparently after 17hrs fasting my stomach was sloshing full of acid. My oesophagus is normal, my stomach looked normal, my stomach biopsy showed me as negative for H. pylori.

The nurse then took a look at my duodenum before taking two biopsies, she immediately noted that it was smooth and afterwards gave me a gluten free diet sheet and told me that she thinks I am an asymptomatic celiac and my other intolerances would likely clear up over time if I go gluten free...

 

Soooo... sound familiar to anyone? 

 

I felt immediately scared that I would have to struggle to eat even more than ever before. But a colleague said this morning that I'd be swapping a relatively rare digestive problem for one that is almost "mainstream" and catered for. Not sure how to feel basically. :D

 

 

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

Celiac.com Sponsor (A8-M):


Fenrir Community Regular
Fenrir
Posted

Very well could be Celiac. In a case like yours the only way to know for sure is do a gluten-free trial and see if you feel better. There are a small number of people who can have all the tests done and stil come up negative but still either have a celiac or a sensativity to gluten.

Jerseybean Newbie
Jerseybean
Posted
  • Author

It's all starting to come together though.

In January 2013 as yet more symptoms surfaced and I saw my doctor for my fourth sinus infection in three months, I said to him "I can't help feeling that all of these weird symptoms have to be something underlying". At which point he said "I know it's hard but I promise in six months time you won't have any ongoing health problems" LOL (changed doctors obviously.)

 

My laundry list goes like this;

- Erythema nodosum

- Canker sores

- Raynaud’s (primarily in my feet + chilblains)

- GERD

- Allium intolerance

- Cracks at mouth corners (occasionally)

- Gas/extreme bloating (only when eating trigger foods)

- Running nose (constant)

- Bleeding gums

- Scalloped tongue

- Painful bumps on tongue (occasional)

- Dishydrotic eczema 

- Benign fasciculation syndrome

- permanent chapped lips

- Obsessive thirst

- TMJ syndrome (jaw clenching day and night)

- Overgrown cuticles and breaking skin on fingers

- Brittle peeling nails

- Anxiety

- Headaches 

- Extreme sugar cravings

- Sinusitis repeatedly

- Very vivid dreams

 

All at 28 :D It's all downhill from here lol

Fenrir Community Regular
Fenrir
Posted

 

All at 28 :D It's all downhill from here lol

Yeah, that's what my wife says about me and i'm 36.

 

I have joint issues, teeth issues, memory issues......ect. All are supposed to be old people things I guess.

Jerseybean Newbie
Jerseybean
Posted
  • Author

Very well could be Celiac. In a case like yours the only way to know for sure is do a gluten-free trial and see if you feel better. There are a small number of people who can have all the tests done and stil come up negative but still either have a celiac or a sensativity to gluten.

 

I've now read a paper or two that suggest calprotectin is a poor test for Celiac's anyway. I'm due back in clinic in six weeks to discuss my biopsy results in depth with the lady who did my gastroscopy, she seemed as convinced as she could be by the appearance of my duodenum and past history. 

 

I will almost be happy if it is confirmed because I will finally have a path to follow, I've been fighting alone and trying to manage my problems for so long!

 

Thanks Fenrir, hope it all goes well for you too x

Fenrir Community Regular
Fenrir
Posted

I've now read a paper or two that suggest calprotectin is a poor test for Celiac's anyway. I'm due back in clinic in six weeks to discuss my biopsy results in depth with the lady who did my gastroscopy, she seemed as convinced as she could be by the appearance of my duodenum and past history. 

 

I will almost be happy if it is confirmed because I will finally have a path to follow, I've been fighting alone and trying to manage my problems for so long!

 

Thanks Fenrir, hope it all goes well for you too x

Chances are if the gastro doc says by looking at your duodenum that she thinks you have Celiac it is correct. Biopsies can be false negative but if the doctor can tell you have it before even seeing the biopsy results it's about as good a diagnosis as you're going to get.

cyclinglady Grand Master
cyclinglady
Posted

Can not wait to hear about your test results in six weeks. Sorry to say, that it is doubtful that you will recover the ability to eat garlic. I can not it eat it or any of the family even after going gluten free. I still am allergic to milk and nuts. I can eat eggs now in baked goods. Let's hope things are different for you!

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748
    Betty Siebert
    Newest Member
    Betty Siebert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.