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Biopsy Is Normal, But Gluten Is The Devil. What Am I?

Jenniferxgfx

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Jenniferxgfx Contributor
Jenniferxgfx
Posted

So I'm glad the biopsy didn't detect any damage, but it would have been nice to have a hard and fast confirmation after years of doctors treating me like a lazy hypochondriac. But I'm done with gluten. I don't even know where to begin with explaining my symptoms, I have so many. I was hoping a negative biopsy would mean I'm not very sensitive, but I think I got glutened from some cc'd French fries tonight, and I feel awful. The meal was otherwise naturally gluten-free. Maybe it's too soon to identify triggers, though.

Anyhow, so the GI doc did acknowledge I could have gluten intolerance, and to stay gluten-free if it's helping, but is happy to push drugs for my weird stomach. I have had gastroparesis but my gastric emptying study last week showed my stomach was emptying TOO quickly... But the meal contained gluten, so I don't trust the results. She wanted me to order domperidone from Canada (I'm in the US and it's not sold here) but I'd rather just avoid gluten.

I get terrible muscle pain (fibromyalgia dx), along with IBS (with a wide range of bowel fun), interstitial cystitis, headaches, sound and light sensitivity, gerd, tingling in my right hand after I eat gluten, hand and wrist pain, irrational anxiety and panic, moodiness and irritability, nausea after eating, chronic anemia (had IV iron even, and that didn't keep it up long either), very low vitamin D (despite supplements). I've also had bad skin since I was a child and I've finally realized I'm not crazy-- these spots itch and hurt and I'm subconsciously itching them (Like in my sleep) because they're really damn itchy, not because I'm flawed and weak as I've been told before. I hope my skin continues to feel better without gluten. I had a few nights with less violent crawling skin (till tonight's fry incident) and it was really nice. I've wanted to post about my skin but it's been such a source of emotional distress for me, I'm not ready yet. (I don't think it's typical DH, but it's definitely a skin reaction to what I eat, because my summertime fruit binges and when I go days without eating from nausea always result in clearer skin.)

I admit I wish I had a diagnosis on paper I could use to "prove" myself. I'm so tired of having to say "I don't care what you think, I know what's best for me." I'd like a little evidence on my side that's not anecdotal, you know?

My chronic pain and brain fog are so severe I can't work right now. Im hoping I've finally found the answer and maybe I can go back to work once I get my gluten-free act together. I suppose getting off disability is good evidence I've got a gluten problem. I'm trying not to have unrealistic expectations for myself but this would be amazing.

But what do I call myself? Can I say I have celiac? Can I say "I can't eat wheat?" Is there some kind of celiac club I can join to give me more street cred? (just kidding about that last part, but I'm just feeling a little lonely right now.)

Thanks for all your support. I've learned so much from all the other posts. I've been really thinking about how wheat-centric our culture is, and how sad it is that so many have suffered and are suffering because of something that is so easy, if it weren't for this processed food culture. What a sham. At least the Internet makes this fight easier. :)

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Skylark Collaborator
Skylark
Posted

I was never diagnosed. I figured out I needed gluten-free on my own. I call myself celiac because I have all the symptoms and got much better gluten-free. Celiac was even suspected when I was a child. Nobody has my medical records except my doctor and nobody questions me socially when I call myself celiac.

What are you really? It's hard to say. The celiac tests aren't perfect and you have a ton of symptoms. There is growing research on non-celiac gluten intolerance but no valid diagnostic tests. I can understand wanting a "diagnosis" with how sick you sound. Perhaps the genetic testing would give you some peace of mind?

I'd say to call yourself what feels comfortable. There can be a sense of lying if you don't have the blood/biopsy. On the other hand, the tests are inaccurate and gluten intolerance/celiac is probably all a spectrum of genetic gluten intolerance anyway. I see it as a spectrum, so I don't worry about not being tested since I have all the symptoms and call myself celiac everywhere but here. Here everyone understands. :)

cahill Collaborator
cahill
Posted

But what do I call myself? Can I say I have celiac? Can I say "I can't eat wheat?" Is there some kind of celiac club I can join to give me more street cred? (just kidding about that last part, but I'm just feeling a little lonely right now.)

We go thur hell for years and some times beat our selves up thinking maybe,just maybe, we are crazy or lazy hypochondriacs but WE ARE NOT!! This is real, my /your pain and symptoms are very real. Just because researchers have not come up with a test accurate enough to diagnoses most of us does not mean it is not real :angry: . Until the money is there for the research most of us will go with out an official diagnosis ( and the money is not behind the research because the pharmaceutical people can not make money of us :angry: )

You can call your self what ever you want. :) Some times it is easier to get people to understand by just saying I can not eat wheat ,depending on the circumstances.

You just got your self a life time membership to the club B)

Group ((HUG)) :D

Jenniferxgfx Contributor
Jenniferxgfx
Posted
  • Author

Thank you both so much.

I used to work for Big Pharma before I got sick (oh, irony!), and I know full well there's no money in diseases like Celiac, but I didn't make the connection at the time that I could be one of those people. Bummer.

Maybe if I go back to work, I can help develop better celiac tests at a university somewhere :)

Oh and I've slept since the french fry incident, and I feel awful. Woke up like someone punched me in the gut, which only happens after gluten. I don't care who doesn't believe me, I'm done with gluten.

mushroom Proficient
mushroom
Posted

I don't give a flying fig what I call myself or what anyone else cares to call me :rolleyes: Gluten intolerant is good enough for me - if someone asks more, I say I am celiac without the official diagnosis. If someone wants to feed me gluten I ask where is the nearest place to barf? :lol: It is really none of their business why I don't eat gluten. I remember feeling terribly embarrassed when I asked a friend how come she wasn't joining us in a glass of wine, and she replied: "I got to liking it too much." Redfaced, I apologized for invading her privacy. People should be more like that with food, too.

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