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Hello Everyone - First Timer


kadmon

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kadmon Newbie

Hi everybody,

I am a first time poster here today, although I have known about my Celiacs disease for close to 6 months or more. It is a difficult transition, which I am sure everyone can attest to here, so I thought it might be time for me to start branching out a bit and talking with others more experienced with this situation.

I am 29 years old and I live in Washington State, just north of a town called Bellingham. I did not go through the intestinal biopsy, for my blood tests were quite conclusive actually, and to tell you the truth, the pain and symptoms started to get really bad over the last 3 years before I finally found a doctor who thought to test me for this.

I suppose I could get the biopsy, but the way I see it, I feel a bit better everyday (except when I accidentally eat something I was not supposed to) so I could ultimately care less about the biopsy. It is just a feeling I guess.

This is obviously my first Christmas holiday that I have to let the cookies pass me by, and the cake and pie and all of that stuff.

I am not sure what everyone goes through when they ingest gluten, but I get horrible joint pains as if I have arthritis or something like that. It generally goes away within a few days, but being 29 I assuredly feel it as not right. I also have been experiencing a severe drying and cracking of the skin on my left hand mostly, although the right one sometimes gets dry also. It seems to always be that way no matter what I do or how much I take care of it.

Anyway, I am so new to all of this so I just wanted to say hi. I hope to learn alot. My 2 year old son was tested after we found out I was pretty much celiac, but he came up negative. I still feel though that I should test him again when he is older possibly? I don;t know much about that, but my wife and I also have a new baby on the way in May and I suppose we should go through the same process there eventually.

Anyway, hello to all and I look forward to conversing with some of you and getting some ideas and help. Thanks for this forum.

Merry Christmas and Happy Holidays to all!

Adam :D


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traveljunkie Rookie

Hello Adam, and Welcome! :)

It's good you decided to join the forum and share your story. My teen son and I are gluten intolerant and have been gluten-free since Feb. After much research on the subject, I have my whole family on a gluten-free diet. We're also vegetarian, so we have a lot of challenges when it comes to preparing meals. It has gotten better with time. My son and I have improved immensely. I'm so glad I found this forum, as it has been very helpful. Feel free to ask any question, or comment on any topic.

Happy Holidays,

Charlene

Lisa Mentor

Welcome Adam:

If you have been possitive in the blood test and choose to be gluten free and you are feeling better, there is no reason to go through the expense of a biopsy. If you are already gluten free as your best ability, then it may effect the biopsy. The endocopy exam is the "gold standard" for detecting Celiac Disease, but, if you are feeling better on the diet, my suggestion is to continue on the diet.

Apparently, we all carry a pre-disposed gene that may trigger Celiac, some may and others may not. We are the chosen.

I often refer to my friends as a car, in neutral is rolling slowly down a grade, with no problem/no harm, then something brings it to the cliffs edge, and it goes over. Therein becomes Celiac Disease.

Watch you child closely, celiac may not be apparent, but watch for the signs.

I wish you well and welcome to the club.

Happy Holidays

Lisa B

celiaccecilia Newbie

Hi and welcome to the board. I am a new celiac also (dx in Aug). Glad you are starting to feel better.

Congrats on the new baby in May.

dlp252 Apprentice

Hi Adam, welcome!

nettiebeads Apprentice

Hi and Welcome!! Since you had the positive blood work and have reacted positively to the diet, I wouldn't bother with the biopsy. And now it would probably give you a false negative. The only thing it could do is to tell you how healthy your intestines are. I was dx'd 9 yrs ago just by the diet. If you feel good on the diet and can tell the difference when you get glutened, then it's celiac. The only test I might be interested in is the gene test for myself and my 21 yr old dd. I would just watch your babies for any prolonged tummy troubles or unexplained irritability or lethargy in the future.

Annette

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    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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