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Newbie And Confused


georgie

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georgie Enthusiast

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

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

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
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

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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      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
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