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corabelle

Test Result Help/need To Re-Challenge?

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A little back story on me... about 6 years ago I got pretty sick, lost a ton of weight (dropped from 125 to 95 on my 5'3"frame). Stomach pains,fatigue,weakness,etc. Tons of random testing done for parasites, autoimmunes (family history of lupus),etc. All came back normal. I was suspected of having celiac but the doctors said my endoscopy was inconclusive though my numbers were borderline high in bloodwork. I probably saw about 5 doctors, each one kept referring me around and they all had their own takes on celiac.. there seemed to be an overwhelming lack of knowledge between them all about it so they'd just send me to a different specialist.

I had gone gluten free a few days before testing (nobody said I shouldn't!). I went on and off gluten for a few months finding it hard to stick to with minimal options and no confirmed diagnosis. Fast forward a few years I had some bloodwork done for fatigue and joint pain, it came back that I was extremely deficient in Vitamins D and B12. The Rheumotologist I saw said with my history he suspected celiac and then with the deficient vitamin levels on top of it he said it was most likely the case. We decided to give full blown gluten-free a shot. I went gluten-free for the next 3 years. This fall I decided it was time to do the challenge and go back on the gluten. I'd had gluten occasionally but only in a "eat this or eat nothing" instance while traveling abroad. Mid October of this year I started my challenge, I did my best to get gluten back in my diet but gluten-free habits were hard to break, I'd gotten REALLY good at avoiding it.

I saw an allergist a couple of weeks ago to get testing done after about 9-10 weeks on the challenge. I don't think I ate much gluten the week leading up to the bloodwork. On the challenge I started having joint pain, stomach pain, nausea, eczema, really bad acid reflux, low energy. SO basically I'd gone from feeling awesome to feeling horrendous.

 

I just got my results in online, I head back to the doc Thu. He was pretty convinced it would all come back pretty high and said he probably wouldn't send me for the scope and just dx based on what we already have.

I thought they were running more celiac tests but this is what I got back:

IGE 22

IGA183 mg/dL

TISSUE TRANSGLUTAMINASE A B IGA 1 U/mL

 

The numbers aren't high at all, I don't know if I ate enough gluten or if it is truly neg for celiac and I'm just sensitive or if I should challenge again or just get the DNA test done. I want to know definitively as my son's ped thinks he may be a celiac kid. Either way I'm planning to go back gluten-free, I can't live like this. Would love to hear your interpretations on my results. Thanks!

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Hi Corabelle and Welcome to the Forum!

 

FWIW... the numbers do not have to be high to be positive, and low numbers that are in the positive range do not necessarily mean there is little or no damage to the villi.  For example, my lab considers anything 11 or above on the ttG IgA to be positive.  I was at 13.  Some doctors would call this a "weak positive" - which to me is like saying someone is "weakly pregnant".  However, my biopsy showed moderate to severe villi damage.

 

Without knowing what ranges your lab uses to determine "normal" vs "positive" it is impossible to interpret your lab results - do you results include the ranges?

 

Has your son been tested for Celiac?

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Hello Corabelle,
Yes, I agree with NoGlutenCooties, we really need the reference ranges used by the lab that performed your tests. I will add to that though, that there are quite a few more blood tests that can be useful in evaluating Celiac Disease and if you wanted, you could consider asking your doctor for a more complete panel. If you do get the other tests ordered, just try to eat as much gluten as you can tolerate up to the day of testing. Have a piece of toast or cereal for breakfast, a sandwich or sub on regular bread or a regular bun for lunch, pasta for dinner, or soup with noodles and regular crackers, etc. Just a suggestion, eating gluten containing foods, while it may make a lot of people sick, it's not very hard to accomplish. Even cheeseburgers with and some without buns from fast food places or restaurants can contain gluten. If it were me, personally... I'd try to have something containing gluten at every meal or roughly three times a day until my tests were done. I myself am chomping at the bit to go back to being gluten free too, but I am choosing to wait until all my testing is done. Though many people just go gluten free and enjoy how much better they feel. It really depends on how important it is to you or or family and the present situation... to officially get diagnosed or figure out whether you have Celiac or NCGS.

For me, it's important that I find out if I have Celiac or NCGS or a different AI altogether. For instance, I have several 1st degree relatives that have symptoms of Celiac but no one else is in a position to find out, so if I find out... and it turns out that I do have Celiac, it will make it more of a priority for them to undergo the testing as well and quite possibly help them to feel better. Good luck and I hope they figure out what is going on with you and your son.

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Thanks, you made a lot of good points. My primary doc had me on a slice of wheat bread a day so I was concerned I wasn't getting "enough" with just that and the occasional pasta or pizza. I've been so tired that I don't remember what I ate that week!

Some info that might help:

 

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

 

 

What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.

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Can you go to your GP and get a celiac panel? The IGE test will not show celiac, that is an allergy test and celiac isn't an allergy. It looks like you only had one celiac test done and the one that was done is not one of the best ones for diagnosing us. It looks like your allergist is not really knowledgable about celiac testing.

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