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What Do The Numbers Mean?
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Hello, I am new to this site, and this disease. I have a couple questions. First I just got my labs back and they were all positive, all of my numbers were between 135-139, my doctor said he has never seen all of them positive at the same time, and he said he thought mine were quite high. He has said he doesnt believe I need the biopsy, does this sound right?

My next question is I have a nine month old who I am nursing, if with this condition I am not getting the nutrients I need, is my daughter getting what she needs from me?

Thank you so much I would appreciate any help I can get!

Stacy

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It's a good sign that your doc is willing to go off of blood work! With numbers that conclusive, it's great to save yourself the trouble of having to have a biopsy.

As for nursing, from what I understand, there _could_ be some issues with nutrients, BUT don't worry too much! If she's looking healthy and happy, chances are, it's not a big problem. Of course, talk to your doc about this further, and maybe you'll want to get some bloodwork to check your vitamin/mineral levels, but you - and she - may be just fine!

And once you get gluten-free, it definitely won't be a problem.

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With numbers this high and particularly if you have symptoms, I wouldn't bother with the biopsy. However, if you need further convincing, then do it.

richard

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Are those numbers high? I am not sure how to read the numbers. I do have the symptoms, do you know if severe muscle cramping in my legs is a symptom also? I would be very happy to get rid of that!

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I do consider those numbers very high...mine was 20, and my doctor considered this enough to go gluten free, and a number of 0-19 is negative result for gluten sensitivity...above 40 I believe is a strong positive...

Rachel

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Be very glad the doctor is willing to go on the bloodwork. The biopsy is expensive even with insurance and you would have to wait until after to go gluten-free. You can get started getting healthy immediately :D .

On the leg cramping, I have heard it can be symptomatic of low potassium level. If so, then it could be related to celiac disease.

If your baby has been doing well, keep nursing. Things will be even better after you have gone gluten-free.

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thank you all for your help, I really appreciate it!!

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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