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Newbie And Confused

georgie

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georgie Enthusiast
georgie
Posted

Hi Everyone, I am new here and hope I am doing this right. I was diagnosed with Hashimotos Thyroid in May 2006, and Dr tested me for B12 and Celiac. The Celiac test came back as normal but Dr did a Gluten Tolerence Diet Challenge which I failed ( severe stomach pain and fatigue). She said I was Gluten Intolerent and to eat gluten-free foods. Since then I have felt less bloated but wonder if its forever? My B12 came back very low ( 148) and Dr has me on weekly B12 shots. She is now testing for Pernicious Anaemia as my feet have had pins and needles for 15 years I suspect that I have PA and not just 'leaky gut syndrome'. I have been reading and everything points to me having Autoimmune diseases as I already have one ( Thyroid). Wonder now that it could also be Celiac even though my blood test was normal? I never really had symptoms of diarrohea until a couple of years ago. Is there any other tests I could do to get a dx ? Or isn't it necessary?

:(

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Ursa Major Collaborator
Ursa Major
Posted

Hi Georgie, and welcome to this board. You appear to have one of the more enlightened doctors (and believe me, they are far and in between), who understands that negative bloodwork for celiac disease can be a false negative. Or that celiac disease is only one manifestation of gluten intolerance.

She is right, if you reacted badly to the gluten diet test, you are intolerant to gluten at the very least. And no, it is not likely you will outgrow it. Meaning, it will have to be gluten-free for life.

If you really want a diagnosis, Enterolab is the way to go. You won't have to be eating gluten for their testing, and will be accurate up to a few months to a year after you eliminated gluten. Check out their site, and see if you would want to try this. Open Original Shared Link. Their tests are very reliable. With them you can also get tested for genes that would predispose you to celiac disease or gluten intolerance.

But, really, you don't HAVE to do any of it. If the gluten-free diet is helping to make you feel better, that's all the evidence that's really needed.

Also, just because you didn't have GI symptoms until just a little while ago doesn't mean that gluten wasn't affecting you negatively. Thyroid problems are very common with celiacs. So is anemia. Central nervous symptoms like pins and needles, or numbness in extremities is also not uncommon. There are lots of celiac disease symptoms other than gastrointestinal ones!

georgie Enthusiast
georgie
Posted
  • Author

Hi Ursula, Thanks for the spedy reply ! I have a great Dr but ...she just seemed to think my Gluten Intolerence was a minor issue. Its just reading this Forum and other info that a lightglobe is coming re my low B12, & Hashis Thyroid. What came first ??? Its a bit of a shock to be dx with all 3 at once !

How many people test negative to Celiac but find out later its a false negative?

eKatherine Apprentice
eKatherine
Posted
Hi Ursula, Thanks for the spedy reply ! I have a great Dr but ...she just seemed to think my Gluten Intolerence was a minor issue. Its just reading this Forum and other info that a lightglobe is coming re my low B12, & Hashis Thyroid. What came first ??? Its a bit of a shock to be dx with all 3 at once !

How many people test negative to Celiac but find out later its a false negative?

Lots of them.

It's also true that people who suspect they have a problem with wheat may test negative because they aren't yet seriously ill, and would never become so if the condition were caught early enough and treated.

LKelly8 Rookie
LKelly8
Posted

I tested negative on the blood panel twice and a "mild" positive on biopsy. My mother having celiac and my own history of autoimmune disease (rheumatoid arthritis) made the diagnosis.

I've wondered if the meds I take for RA, which are immunosuppressant, may have affected the outcome of the blood tests.

Enterolab's methods, patented by Dr. Kenneth Fine, are still un-peer reviewed and unpublished. I find it disturbing to see in a medical professional like Dr. Fine. For myself I would not use Enterolab. :( Someone on the board (Kathy?) mentioned that Dr. Fine plans to publish in the near future - another year, maybe two. I've heard this before from the Enterolab camp, which makes me skeptical, but I hope it's true - the stool tests would be so much easier on kids. (Not to mention grown-ups)

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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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