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Looking For Advice On Pursuing A Celiac Diagnosis

LSP2012

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LSP2012 Newbie
LSP2012
Posted

Hello,

I'm new here and very new to this lifestyle. My insurance doesn

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Cara in Boston Enthusiast
Cara in Boston
Posted

More celiacs are overweight at the time of diagnosis. Being underweight due to malabsorption IS a symptom of celiac, but not the most common.

If you don't need a formal diagnosis (for school, insurance, etc.) don't bother making yourself sick in order to be tested. Don't bother spending additional money to find out an answer you already know.

However, I would assume you have it (given your symptoms and response to the diet) and act accordingly - never cheat, encourage all first degree relatives to be tested, be aware of the symptoms of other, related autoimmune disorders, etc.

What would you do differently if the doctor told you you did indeed have celiac?

Cara

mushroom Proficient
mushroom
Posted

I agree with Cara. The diagnosis at this point would serve little purpose except to wave in the face of the ignorant doctor. You would have to eat gluten for 2-3 months to make the testing valid and cause yourself additional distress and damage in the process. Just assume you have it (even if it is non-celiac gluten intolerance the treatment is the same) and get your family tested and keep watch on your kiddos for development of any symptoms (you know what to look for now).

It is perfectly normal, once you have been gluten free, for your reaction to gluten to be stronger than it was previously. Your body is no longer worn down with all that gluten and is able to mount a more vigorous attack with fresh antibodies :)

Eat gluten free and be well.

nvsmom Community Regular
nvsmom
Posted

Hello,

I went into this assuming I was gluten intolerant. I ruled out celiac on my own because of one reason - I gained weight (about 60 pounds over 5 years, which is now coming off on its own after changing my diet). That doesn't seem to be the experience of many celiacs who lose weight due to malabsorption issues

Giambi Newbie
Giambi
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

mushroom Proficient
mushroom
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

According to today's diagnostic classifications, quite so. But the major definition of celiac disease is gastrointestinal damage, and we are now finding all the other places where it wreaks its havoc, so who is to say right now that these are not also manifestations of celiac disease as well as "sensitivity". It is an evolving area and the criteria may change over time.

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      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
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    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      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.
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