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kaysol

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kaysol Rookie
kaysol
Posted

I went to my Dr. last week because I have been trying to lose weight for 7 months with no luck (have actually gained 4 lbs). I am working out, tried eating less, eating more (after testing my rmr) etc. I also complained of bloating in my stomach. anyway, he ran all kinds of blood tests. while waiting for them to come back I cut out dairy and was amazed how much better my bloating was so thought I had it figured out. yesterday they told me I am likely positive for celiac. I was in shock. everything I have read does not sound like my symptoms (I know some people do not have any) Isn't weight loss one big symptom (because I am NOT losing weight, believe me!) I got another blood draw for another test (not sure the name of that one) and am waiting on that. The reason I am quesitoning this whole thing is my results were SO high that it seems out of the range even.

My Gliadin AB IGA was 144 and the AB IGG was 111. It says high is over 30, mine is like 4x that high. If mine are really that high wouldn't I be feeling more symptoms or at least be skinny? I feel so overwhelmed right now, I was just diagnosed with a heart condition in January and can't believe I know might have to deal with yet another major lifestyle change. I can't even begin to imagine how hard a gluten-free diet will be, everything I look at has some form of Gluten, how do you do this! I am so upset right now!

Does anyone have any advice on my lab results while I wait for the other to come back - do these numbers sound ridiculously high or do people have numbers like this often?

Any help would be appreciated, I am so lost! (also I did the test while fasting since they were also checking glucose, would this make any difference?)

Thanks!

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terri Contributor
terri
Posted

Hi, I'm sorry to hear you're so distressed but can certainly understand why! Diarrhea, abdominal pain, weight loss, those are "classic" Celiac symptoms. They are now finding that people with "classic" symptoms are actually in the minority! You do not need to be losing weight or having diarrhea. You can be constipated, have headaches, there is a multitude of symptoms that can go along with this disease. I'm not too sure about the levels that you mentioned, as my doctor tested me and called me and told me my blood test was positive for Celiac. (I had classic symptoms). I went on the gluten-free diet 4 1/2 months ago and the difference is incredible. Yes, it is very hard to be gluten-free but trust me, the results are well worth it. This board is here for you to vent, cry and ask for help. We've all been there and are here for you.

sunflower Newbie
sunflower
Posted

I won't help you much with your results either, as I was diagnosed as a baby and don't know about meaning of test results or what they are supposed to be like... But I think that if your results are so high it should mean that your body's reaction to gluten was quite strong, even though you didn't show "classic" symptoms. I understand the shock and I am sorry for you.

I noticed that there is a part of this board called "Gluten-free diet and weight issues" ( Open Original Shared Link )- I haven't read it until now because I'm OK with my current weight, but after reading your post I looked through some messages posted there and I found out that there is quite a number of people who were diagnosed with celiac disease even though they were also fighting with their overweight. I thought you might want to look through those messages to see if they can help you. Unfortunately, I can't offer any more help, but I hope that this board will help you learn how to change your lifestyle, as it has helped me.

lovegrov Collaborator
lovegrov
Posted

I didn't have obvious symptoms (at least not right up until I suddenly got VERY ill) and my numbers were also sky-high, indicating I had had celiac for quite some time with no symptoms. Your doctor is probably doing the ttg now, but with the two readings you have the odds are soemthing better than 95 percent that you do have it. BTW, I know of people weighing 250 or more before they were diagnosed. If you do indeed have it you're very fortunate to have a doctor who knows you don't have to be skinny to have celiac.

richard

kaysol Rookie
kaysol
Posted
  • Author

Thank you all so much for your replies. I am so thankful to have found this board. I would feel so alone without it! No one understands what I am going through. friends are saying things like "well you were never a big bread lover anyway", they have no idea that just about eveything in their cuboards (and mine!) has gluten in it. It doesnt help that I have 2 small children and find it hard enough to cook dinner once must less twice! Also now I have to worry about passing this onto them as well as the worry they could get my heart condition which is also heriditary! I am a mess right now but I'm sure I will learn to cope and be fine.

Did anyone else feel like they were mourning food after they found out? (i really am not a pig, I just enjoy cooking and eating) :P I keep thinking things like "I can never eat so and so again" its so ridiculous and silly but thats where I am right now.

Thanks again for all the support and replies, I appreciate it!

Stephanie

celiac3270 Collaborator
celiac3270
Posted

People don't have to be skinny to be celiac -- actually, many are overweight or obese.....a really skinny, symptomatic person is the sterotypical celiac, but not necessarily the most common.

It wouldn't make a difference if you were fasting--your blood is not going to skyrocket or drop dramatically if you don't eat for a day or two.

-celiac3270

future140 Newbie
future140
Posted

My husband was off gluten for three days when he had his blood test. The doctor said that was fine but from what I've read on the message boards he should have been eating gluten up until he was tested. Any insight would be great. Also, how do you find a doctor who knows about celiac? We had to push for him to test for it.

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