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How 'worthy' Is An Official Label?


Stern

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Stern Newbie

My doctor is apparently not willing to do anything for me, and I've just been wondering about this for a little bit.

 

I've been on a gluten-free diet for a little under 2 years now. I went gluten-free with a friend that did have celiac disease, and recognized some of her own symptoms in the problems I'd been having. I felt so much better that month, that I knew that gluten had to be a problem for me. However, when I tested (I went back on gluten for a month, then had a blood test done), it came back negative. However, that month was horrible for me, and I went back on the gluten-free diet after the test.

 

So, I've been reading that blood tests aren't the end-all, be-all, and that endos or other tests are much more conclusive. However, my doctor didn't really jump at the idea when I presented it, and now I'm wondering, how much would the 'label' help me? Yes, it would let me know exactly what was happening to my body if I decided to eat gluten, but otherwise?

 

Some of my symptoms before (Pre-2 years ago, going on for... years and years...), flatulance, nose bleeds, what I'm suspecting was a slight case of osteoperosis (never got it -confirmed-, but I mean, I broke my finger catching a not-too-stong basketball pass.), something that the doctors called excema, and a few more things.

 

Could I get some help, please? I don't feel like my doctor understands, not that she cares either, and I'd like some more ideas of what my next step should be.


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Ollie's Mom Apprentice

There are a number if us here who are "self diagnosed". We know gluten makes us feel awful, and know we feel better without it. Some of us (including me) wouldn't be able to do a gluten challenge to get an official diagnosis anyway. Just a trace of gluten and I'm violently ill for 24 hours, and feel like crap for days after that.

My personal opinion is that if you don't need special accommodations, like if you're a student trying to opt out of a mandatory meal plan at college or a younger child who needs special accommodations at school, an official diagnosis isn't necessary.

I figure if gluten is causing health issues, it's really a bit of a blessing. You don't need a doctor's approval or prescription to start a gluten-free diet. My doc thinks I'm a bit nuts for going gluten-free, but since it has made my laundry list of symptoms disappear, I really don't care what he thinks. ;-)

Stern Newbie

Hahaha, luckily, not just yet, I get out of school before lunch anyway through my schedule, but I'll have to look into the college thing, I wasn't aware that I might have to work it wout with college, but I'll look into it (Not quite sure where I want to go anyway, this is going to be a factor, I guess. x_X ) I was worried about having to go back to gluten, but since you're saying it may not be necessary, I think I won't tackle it until it is really getting to be a problem (Which I haven't seen so far)

 

Thank you so much for answeing my question. :- ) I'm just kinda lost x_X

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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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