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Completely Disappointed


newgfcali

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gary'sgirl Explorer

Thanks for the links and for sharing some of the experiences and symptoms that you all have been going through. It has been helpful!

I hope with time all problems resolve for all of us - hopefully less time rather than more. :D


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JNBunnie1 Community Regular

Ummm....you know, I'm sure it was all that pineapple upside-down cake I'd been consuming! ;)

In answer to your question--and I hope I don't get in trouble here--I'm not sure. I drink filtered water, don't use pewter plates or anything...I did however, grow up sort of between 3 military bases, and found on the EPA's site reports of the horrific poisoning of the wells in the area (we had a well) in the area. I live across a narrow bay from another base, and the same site listed at least 52 or so "known" heavy metals in the bay.

My doc said that she's getting as many of her patients as are willing to do this test, and that they all say, "How in the world could I have heavy metal poisoning?" And she tells them "Because it's in the air, the water, the ground---pretty much everywhere. Because you live on Planet Earth."

Got any metal fillings in your teeth?

Black Sheep Apprentice

Oh, I'd forgotten about them. :blink: I had them replaced with the porcelain or whatever it is, about 3 1/2 years ago. But I didn't realize at the time (which was dumb) that when you do this, you're supposed to do a heavy-metal detox, at least for mercury, because removing them releases a lot of mercury. Then last year, when my doc had me do the detox, I was researching h.m. poisoning, and read about detoxing before and after the fillings come out. Believe me, I was doing the Homer Simpson "DOH!"

I'm still not sure about the lead and tungsten, unless it's from the military stuff. I could find very little on tungsten....almost everything I found said it hadn't been studied much, except in Russia. And wouldn't you know it, all the Russian sites re. the stuff were in Russian! About all I could find was that it's used a lot in military "stuff" (of course they never said what), and some interesting little articles re. leukemia clusters in Fallon, NV several years back. They tested the area and found it to be quite high in tungsten. Fallon has a Navy base, I believe.

  • 1 month later...
Coolclimates Collaborator

I have almost finished Shauna "Gluten free Girl" book. It's really been a pleasure to read something about Celiac that is also uplifting and enlightening. I made her chocolate banana bread w/ teff flour from her blog the other day, it turned out awesome!

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    • deanna1ynne
      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
      Yes gene HLADQ2 was positive 
    • Wends
      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
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