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Allium Intolerance Really Celiac Disease?
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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

 

 

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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.

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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

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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.

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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

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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.

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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!

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
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