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Advice Needed

NewYrsBB

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NewYrsBB Newbie
NewYrsBB
Posted

Hello, I'm new here, looking for help! I'm sort of rambling here, so please bear with me :)

I was dx with IBS-C (w/pain/gas/bloating) 2 years ago following neg. celiac blood test (I was also on the Atkins diet at the time), colonoscopy, crohn's screening (fluoroscopy?), etc. I was told to increase fiber intake, and was given Zelnorm, Miralax, NuLev to manage the symptoms (I currently take Miralax and acacia fiber to help with constipation). The pain I experience is on the lower right side of my abdomen, and sometimes it is trapped gas, but other times it seems like my intestines seize up in that one spot. When I had the pain constantly, I noticed it was when I was eating either Fiber One or the Atkins breakfast cereal (which lists gluten as an ingredient). I believe there is definitely a correlation. I now alternate between rice cereal or oatmeal for breakfast, both with lactose-free milk, which has helped reduce the pain episodes.

During my last GI visit about 6 mos ago, I told my doc I thought I had problems with wheat and wondered if I could be one of the false negative blood tests you hear about. She said the only way to know for sure if I have celiac is to have a biopsy. She also said I could simply eliminiate gluten from my diet and see how I feel. I decided I would simply try to avoid gluten - which is much easier said than done!! I do avoid it 90% of the time, but the 10% I eat it, I get totally backed up, feel tired and sluggish, achy joints, etc.

I'm rethinking the idea of a biopsy, but would I need to increase my gluten intake and if so, for how long to know whether it is causing damage? Is it really worth it? Maybe I'm just gluten intolerant!

Thanks so much for any advice you can give!

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KaitiUSA Enthusiast
KaitiUSA
Posted

Which blood tests did you have done? Did you get all of the following tests?

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Some are better and more specific then others. In fact, one of the blood tests is getting ready to take the place of biopsies for diagnosis at least in children.

A biopsy can be good. A positive one can rule it in but a negative one CAN NOT rule it it out. There could be no damage in beginning stages or sporadic damage that they can't see.

You need to be on gluten for about 3 months before a biopsy eating equal to about 2-3 pieces of bread a day.

Another consideration would be an Enterolab testing. They can do gene testing with a mouth swab and stool testing to test for malabsorption, tTG, gluten sensitivity, etc.

Go to www.enterolab.com for more details. I don't think you need to get on more gluten for that test either. For blood tests or biopsies it would be different though.

Also, gene testing may be a good option because if you do not have a celiac gene you are 99.9% chance of not getting celiac. There are gluten intolerance genes as well but only Enterolab tests for those genes. You can get testing through Enterolab with the mouth swab or there are blood tests to get done ordered by doctors but with that they only test for celiac genes.

Hope you get some answers soon :D

tarnalberry Community Regular
tarnalberry
Posted

Just backing up what Katie said, and adding that the test of trying the diet is a test in and of itself. If you get that other 10% out of your diet, feel better, and four weeks later try one meal with plenty of gluten, that is a very valuable test as well - without having to do it for 3 months. *Some* doctors will take that as evidence, but not many.

NewYrsBB Newbie
NewYrsBB
Posted
  • Author

Thank you, Kaiti & Tiffany! It sounds like I have a few options at this point...

Kaiti, here are my blood test results (from 11/2002):

Tissue Tansglutaminase AB IGA - 4 units

Gliadin AB IGG - 6 units

Gliadin AB IGA - 9 units

(values under 20 are considered normal)

Did they miss something??

Thanks again for your advice!

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