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Initial Diagnosis A Possible Gluten Problem?

songstressc

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songstressc Apprentice
songstressc
Posted

Hi Everyone, I am new here - learning to use post etc. My diagnosis is a maybe Gliadin count is 11. I am hoping some of you could share your histories and diagnosis. Were you diagnosed as a maybe and indeed were Gluten Intolerant? It is such a dramatic life

change - It would be great to hear if indeed I could be on the right track. Are you feeling better now?

Thanks for sharing :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

I had two family members who were only one point into the postive range on testing and went gluten free and saw a surprising difference in a number of issues. As for myself I never showed postive on a blood test and it was a real struggle to get diagnosed since the doctors would see the negative blood work and considered that negative to be a firm diagnosis that I didn't have celiac. The reality is that up to 30% of us show up negative on the blood tests even at the end stages. I was one of them. I was finally diagnosed 6 years ago and well my signature says it all. You have nothing to lose by trying the diet strictly for a couple of months UNLESS you are going to have an endo and biopsy if that is in your future do keep eating gluten until the biopsy is done.

GFqueen17 Contributor
GFqueen17
Posted

i had GI problems for yearssss and my mom is celiac so she suggested i try going gluten free. i didn't think of getting a blood test first, i just went gluten free right away...and i felt much, much better! i did end up getting a blood test after about a week of being gluten free but of course it came back negative. i am not willing to go back on gluten just to get an accurate blood test. i know that every single time that i accidentally get contaminated with gluten, i get very, very sick...and that is all i care about.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
It is such a dramatic life change.

I went gluten-free on the recommendation of an allergist and I felt SO much relief from my abdominal pain. There was no way I wanted to try the "challenge." I could already tell that gluten was doing bad things to my body. That being said... at first I was hoping I was just a "little" intolerant. That maybe I wouldn't have to be paranoid about cross-contamination, lip balm, using the same toaster as my husband, etc... That's what my first post was about ;) Now that I've learned more, I really see the benefit to going gluten-free 100%. I feel great and I honestly don't crave gluten and dairy anymore! A bit of real ice cream would be nice, but I can live without it. I don't feel deprived. There are SO many good things to eat if you take the time to cook and explore new areas of the grocery store. People on this forum are wonderful about offering their advice and recipes :P

Welcome to the group!

songstressc Apprentice
songstressc
Posted
  • Author
I had two family members who were only one point into the postive range on testing and went gluten free and saw a surprising difference in a number of issues. As for myself I never showed postive on a blood test and it was a real struggle to get diagnosed since the doctors would see the negative blood work and considered that negative to be a firm diagnosis that I didn't have celiac. The reality is that up to 30% of us show up negative on the blood tests even at the end stages. I was one of them. I was finally diagnosed 6 years ago and well my signature says it all. You have nothing to lose by trying the diet strictly for a couple of months UNLESS you are going to have an endo and biopsy if that is in your future do keep eating gluten until the biopsy is done.

Thank you Ravenwoodglass for sharing - I really appreciate it. I feel better just chatting to someone - -ahh so many comfort foods gone! :huh: Your story is amazing- I was at the ND today and she said it is not a maybe and explained the false negative test that happens often. had to laugh as when I asked her to check my husband's gliadin - he was higher than me! Love the quote!

thanks,

songstressc Apprentice
songstressc
Posted
  • Author
i had GI problems for yearssss and my mom is celiac so she suggested i try going gluten free. i didn't think of getting a blood test first, i just went gluten free right away...and i felt much, much better! i did end up getting a blood test after about a week of being gluten free but of course it came back negative. i am not willing to go back on gluten just to get an accurate blood test. i know that every single time that i accidentally get contaminated with gluten, i get very, very sick...and that is all i care about.

thanks for sharing - I wonder how long it will take for my son to to change his ways? He has the same GI probs as I do. I asked the ND today if my count is higher or lower depending on what I have eaten and she said it does not make a difference and that most people have a false negative test. Oh well, carpe diem!

lizard00 Enthusiast
lizard00
Posted

I'm in there with ravenwoodglass... I could be half dead and NEVER have positive celiac blood tests. Although, I am diagnosed.

A reaction is a reaction, whether it's a huge amount over the range, or just one or two points. Making antibodies to gluten doesn't happen if gluten is not a problem for you. Your ND is exactly right, false negatives are unfortunately not all that uncommon.

I can honestly say that I do not miss gluten at all! When I see it, it looks like poison to me. The only deprivation I have felt was a year ago when my life was passing me by. I discovered gluten to be a problem, and I ditched it and never looked back. There have been moments of frustration, moments of anger... all of the things you would expect. But in a situation such as this, you find the good. For me, I was unexplicably sick. Finding gluten was a <i>relief</i> because I didn't have to worry about taking drugs the rest of my life, or being constantly monitored for side effects...all that stuff no one wants to have to deal with. If I could control my health by removing a food, it wasn't so bad. So I chose my health, and it's much easier when it's a conscious decision.

Anyway, welcome to our club! We are always here to help, so please feel free to pick everyone's brains!

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mommaofthree Newbie
mommaofthree
Posted

I was just recently dx, 6 days ago now. I went in to see a GI because I believed I had IbS, they scoped and took biopsies and found that I had Celiac. However, I had more symptoms that I was just dealing with thinking I was getting Old ( I'm 27) and having 3 children just messes with your body. I had the skin rash, lost my period for months, had FHS tests that showed me at advanced menopause levels, and of course I was constantly exhausted and iron deficient. I saw 2 doctors for these issues and not one of them put it all together, not even my GI who believed I had IbS. She none the less was shocked.

I guess I was lucky to get the biopsy done first and the blood test second. After reading so many posts about not showing in blood levels.

I am on a crash course to learning everything I can about how to eat and I really appreciate all the information at this site!!

Krista

Antioch, CA.

songstressc Apprentice
songstressc
Posted
  • Author

Thank you - all of you who have taken the time to share your history/stories. I am very thankful for this site and the people on it. I have never taken part replying or talking on sites and it is surprising how great it feels to talk to others in similar situations. Happy Holidays to all of you whatever beliefs you follow and wishing you a fantastic new 2009! :D

IMWalt Contributor
IMWalt
Posted

I can identify with this. I was just looking at my test result of "3" for Iga. My GI told me that was a negative. I had been gluten-free for over 2 months when I first went to the GI, and she told me to eat gluten for 3 weeks and then we did the test. I did not eat much gluten during that 3 weeks, because I was not told I should eat a lot, and I did not like the side-effects. However, I went for a follow-up just last week, and she now feels that I do have celiac based on my positive dietary response and the fact that every time I eat gluten, either accidently or on purpose, I end up with the same old symptoms; gas, cramps, noisy stomach, D or loose stools. I don't understans the tests, but I do understand my GI tract.

Walt

luciddream928 Explorer
luciddream928
Posted
I can identify with this. I was just looking at my test result of "3" for Iga. My GI told me that was a negative.

I've had a question about this for a while - why does that number have to be above 10 to be a positive? Shouldn't it be, "either you have it or you don't"?

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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    • SilkieFairy
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      By SilkieFairy · Posted

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      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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