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Luv2teach

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Luv2teach Rookie

Hi,

My brother has celiac so I got tested even though I don't have any symptoms at all. The antibody test was positive so I had an endoscopy. The dr said I have celiac as am at a Marsh scale level 2. However, online lots o things say celiac is not confirmed unless you are at marsh level 3 or higher where villa atrophy has occurred. So do I have celiac or not? Thanks for your help!!! :)


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mushroom Proficient

You have a positive blood test for celiac. Your endoscopy shows that you are two steps down the villous atrophy path -- you just havn't made that final step which will start doing in the villi. Do you want to keep eating gluten until you take that final step, or do you want to avoid that path?

Your doctor is a wise man who is treating the patient, not the tests. It may not seem like it to you, but you are lucky to have learned early that gluten is not good for you and to be able to eliminate it before you suffer serious harm from it :) I know that eating gluten free seems like a daunting prospect when you don't feel like you are suffering any side effects from it, but you are making lots of antibodies to it and they are causing inflammation and other changes in your gut already. And you are your brother's sister. I would say you have early celiac. Accept it and do not look back :rolleyes:

Luv2teach Rookie

Mushroom- thank you so much for the reply. I know you are right, I just don't want to accept it! :( especially since I am a vegetarian, this is going to be so hard. Does anyone know, since I have no symptoms and the villi aren't affected yet, does that me at this point my body is still absorbing all the nutrients? Also, I have now been gluten-free for two weeks. I hear ppl get sick from cross contamination but would I not get sick since I've never had symptoms? Hope that makes sense. I appreciate your feedback!

mushroom Proficient

There is a poster on the board, luv2travel, who was diagnosed as you were without any apparent symptomatology. She found it difficult because she did not know if she was being cc'd or not. She recently had a very strong reaction to some cc, so the answer would appear to be that you very well could in the future. We do know that the body is relieved when gluten is withdrawn and it can stop producing antibodies. So if and when it again encounters gluten it gets quite upset and creates an even stronger response, So it is possible that somewhere down the line you could start having a GI reaction to gluten.

As for malabsorption, I frankly have no idea. To be a Marsh 2 there must be at least some inflammation, but whether that is interfering with your nutrient levels I don't know. Many times gluten intolerants who are not diagnosable as celiac do have lower levels of some critical nutrients, so there is no way of knowing how this malabsorption works. If I were you I would at least have my Vit.D and B12 checked, and if either of those shows up low then check the other likely candidates. :)

psawyer Proficient
  On 2/9/2013 at 9:24 PM, Luv2teach said:

...the villi aren't affected yet...

Marsh 2 says your villi are affected. Marsh 2 indicates a level of damage not severe enough for some doctors to call it celiac disease, although many enlightened ones will.

nvsmom Community Regular

I chose not to have the endoscopy done because my ttg IgA and EMA IgA were very positive, and because I have had stomach symptoms since early childhood. I am guessing they would have found a lot of damage in an endoscopy simply because I ate gluten, and had symptoms for decades.

Despite all that, when I had my nutrient levels checked, they were all great, except for my D which was on the low side of normal (but still considered normal). Not all celiacs have low nutrient levels, but it does seem to be the norm.

Also, over time you might notice improvement of some health issues that you don't realize are symptoms. I had no idea that my migraines were linked to celiac until I stopped having them. That also goes for my leg cramps at night. I'm also seeing my arthritic like joint pain improve after 6 months which is very exciting for me.

Give it time and you might notice symptoms that have improved that you'll be able to refer back to if you suspect you've been cc'ed.

Best wishes.

Luv2teach Rookie

Thank you!


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