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Being Diagnosed Questions: Thanks In Advance


kystef

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kystef Newbie

Hi. My doctor told me last week that he thinks I may have celiac disease. I was diagnosed 5 yrs ago with IBS and am tired of suffering and went to a new dr. He ordered lots of bloodwork and stool samples. He told me to go Gluten Free for a week and see if I feel better. This will be hard. Is going gluten free the only way to really know or will my bloodwork be enough to let him know? I really want to feel better and so if it means going gluten free, then I will but I do not want to do it if I don't have to. Any help or suggestions will be greatly appreciated. Thanks so much!!


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Lisa Mentor
Hi. My doctor told me last week that he thinks I may have celiac disease. I was diagnosed 5 yrs ago with IBS and am tired of suffering and went to a new dr. He ordered lots of bloodwork and stool samples. He told me to go Gluten Free for a week and see if I feel better. This will be hard. Is going gluten free the only way to really know or will my bloodwork be enough to let him know? I really want to feel better and so if it means going gluten free, then I will but I do not want to do it if I don't have to. Any help or suggestions will be greatly appreciated. Thanks so much!!

HELLO and welcome to this site. It 's the best source around.

There are three ways to diagnose Celiac.

1. Celiac Blood Panel

2. Endoscopy and Biopsy

3. Positive Dietary Response

Each on it's own is a diagnosis as well as supportive testing. The only truly accurate test is a positive dietary response (a true and full gluten free diet). The blood work can show false negatives and the biopsy can be hit or miss in the expansive small intestine.

The gluten free diet, for the most of us was a welcome challenge. Is it hard, you bet it is especially in the beginning. It can be very complicated and the learning curve is steep.

I would suggest that you not begin the gluten free diet until you decided on further testing. You will want the optimum accuracy. You do have an option of beginning the diet to see if you have a positive response, this will obscure further testing. But you may have your answer.

Hope this was helpful.

kystef Newbie
HELLO and welcome to this site. It 's the best source around.

There are three ways to diagnose Celiac.

1. Celiac Blood Panel

2. Endoscopy and Biopsy

3. Positive Dietary Response

Each on it's own is a diagnosis as well as supportive testing. The only truly accurate test is a positive dietary response (a true and full gluten free diet). The blood work can show false negatives and the biopsy can be hit or miss in the expansive small intestine.

The gluten free diet, for the most of us was a welcome challenge. Is it hard, you bet it is especially in the beginning. It can be very complicated and the learning curve is steep.

I would suggest that you not begin the gluten free diet until you decided on further testing. You will want the optimum accuracy. You do have an option of beginning the diet to see if you have a positive response, this will obscure further testing. But you may have your answer.

Hope this was helpful.

Thanks. Is there a timeframe where I should feel better as far as all these crazy GI problems are concerned? I have not eaten anything with gluten since yesterday morn and should prob carry on a few more days to see if I have results. I just get ansy and want a "quick answer" "quick fix"

Lisa Mentor
Thanks. Is there a timeframe where I should feel better as far as all these crazy GI problems are concerned? I have not eaten anything with gluten since yesterday morn and should prob carry on a few more days to see if I have results. I just get ansy and want a "quick answer" "quick fix"

Unfortunately, if you do have Celiac or a gluten intolerance, there is no "quick fix". Healing can being to occur within days and it may take up to several years to totally heal. Everyone is different as it depends on the amount of damage done. And the diet is for life.

Eating gluten free, as I said, is complex. Old toaster, wooden spoons, colanders, scratched pots and pans, medicines, vitamins, shampoo, lip sticks/balms, toothpaste, soy sauces, oatmeal are just a few of hidden sources of gluten.

Beagle Newbie

Thanks. Is there a timeframe where I should feel better as far as all these crazy GI problems are concerned? I have not eaten anything with gluten since yesterday morn and should prob carry on a few more days to see if I have results. I just get ansy and want a "quick answer" "quick fix"

Kystef,

I agree with Momma Goose as far as continuing the gluten until your tests come back or they want to do more testing.

I, too, wanted a "quick-fix". I was so frustrated and wanted things to change right away, but the sooner I accepted that it wasn't possible, it got a little easier. This "acceptance" didn't come right away either.

I was only diagnosed one year ago, so I'm still kind of new to this thing. Trying to figure out what's for dinner that both me and my husband like, but still be gluten-free, isn't very easy.

One thing is very important and that's to find support to help you through this. My natural doctor helped, but one thing that has given me hope is that I found a local support group. There was an article in my local newspaper about it and my life has been much easier. We share recipes, help others get through tough days, etc.

Anyway, I hope things start to improve as far as your health & your patience level goes.

Hang in there!

Nancym Enthusiast

Most people make a lot of mistakes when going gluten free, so it kind of depends on how strict and careful you are, and then of course it also depends on how fast your individual body responds. I was pretty well convinced in 2 days because my constant diarrhea and cramping eased up. Only time it returns is when I eat gluten. Other things took a lot longer to improve, like 6 months to feel relief from my joint aches, a couple months for the brain fog to let up.

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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