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Hi, New Here, 7 Yr Old Dd......

junieb

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junieb Rookie
junieb
Posted

strongly pos bloodwork, dr said between bloods & history we should assume celiac unless biopsy comes out negative, which I don't think anyone expects to happen. I am curious about vitamins for kids and also calcium supplements (she has a metabolic disorder and has had to avoid dairy until recently, so has been on calcium for years). She also has tree nut allergies. We have Whole Foods and Trader Joe's nearby. Thanks!

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Guest jhmom
Guest jhmom
Posted

HI and welcome! I am sorry your daughter may have Celiac, my 10 year old and I were dx 2 years ago so I know what you are going through. I can tell you it seems overwhelming at first but it does get easier.

Don't be frustrated if the biopsy comes back negative as it's very possible it could. A lot of people with Celiac could or could not have positive blood test and/or biopsies. Some have pos blood, neg biopsy and some vice cersa. Celiac is sometimes very hard to dx because it takes time for it to show up in the blood, everyone is different and also because some doctors out there think its a very rare disease.

As far as the vitamins go, Vitaballs (gum vitamins) are gluten-free the last I checked.

Guest nini
Guest nini
Posted
strongly pos bloodwork, dr said between bloods & history we should assume celiac unless biopsy comes out negative, which I don't think anyone expects to happen. I am curious about vitamins for kids and also calcium supplements (she has a metabolic disorder and has had to avoid dairy until recently, so has been on calcium for years). She also has tree nut allergies. We have Whole Foods and Trader Joe's nearby. Thanks!

<{POST_SNAPBACK}>

If the bloodwork is positive you do not need the biopsy! Seriously. I didn't have the biopsy and I KNOW I have Celiac. my bloodwork was highly positive as well. Strong history as well. The only thing the biopsy is going to tell you is IF there is currently damage, with positive bloodwork, she has it PERIOD. The Dr. is operation on outdated information. (A lot of Dr.s still are so don't worry). If the biopsy doesn't show any damage, that doesn't mean ANYTHING with the strong pos. bloodwork. My Dr. said with my history and the strong pos. bloodwork, the biopsy was redundant. And invasive. The only reason he said to do it, was IF I did NOT respond to the gluten-free diet. I started the diet that day.

My daughter's bloodwork was neg. no biopsy, but pos. response to the diet, within days she was a different child. She is now a very happy very healthy 5 year old and would gladly share any snack and meal ideas with you.

Enjoy Life Foods makes some decent Allergen Free /Gluten Free cookies, breads and bagels... not the best, but with nut allergies you gotta be careful.

I found a chewable vitamin for my daughter at Dollar Tree of all places that is labeled free of Gluten right on the label.

junieb Rookie
junieb
Posted
  • Author

Thanks so much for the replies! Our dr is at Columbia in NY. I don't know why he is doing the biopsy instead of just relying on the bloods. I haven't seen the actual test results paper, but the drs offics read the results off to me over the phone - it doesn't look like she had the EMA, which I know is highly specific, but the tT test - I forgot the rest of it...the one that's also supposed to be specific.....was 113, with anything >30 being strogly positive. One of the other less specific tests was strongly positive, and one was neg. Is there anything else this could be if we don't have the EMA? I don't know why the dr isn't repeating the bloods. He did say we have to assume that this is celiac, but he said unless the biopsy is neg. Can she be dx celiac with pos bloods and a neg biopsy if she has been on gluten her whole life? Or does it not really matter whether or not you have an actual dx? I guess I'm nervous to assume for myself without all the tests because what if it's actually something else that would be missed? What if it's somthing that may not require the strict diet? I guess I'm also wishing that she would not have to be on another strict diet, having had to deal with somthing similar thus far. But I know that if this is what it is, she will be 100% gluten-free - I can't imagine having all formed poops!!!!!!! Now that is exciting. LOL what a mom thing to say.

Guest nini
Guest nini
Posted

Yes the biopsy can be negative even with pos. bloodwork. Depends on many factors, in young children and even some adults, sufficient damage hasn't yet occurred to the point that it can be found in a biopsy, also the Dr. could take samples from areas that are not yet damaged and miss areas that are damaged, AND waiting until damage occurs is just asinine IMO...

As far as I know, based on what I've read and what my GI Dr. told me, if the bloodwork is pos. there is not much else it can be. If she responds positively to the diet, then you have your answer. If she does not respond positively to the diet, then by all means, keep searching. But... the gluten-free diet can be a very healthy diet even if it's not Celiac. But with pos. bloodwork, you know at the very least she is Gluten Intolerant.

We need to start trusting ourselves more than medical Dr.s, I mean, how long has the Western Medical Profession been in existence? A few hundred years? For millions of years people have treated their ailments with dietary changes, herbal remedies and other natural remedies. We have an innate intelligence that enables us to heal ourselves if we just learn to listen to the messages our bodies are sending us.

Western Medicine is unproven, that is why they call it Practicing Medicine! LOL!

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      Inconclusive results

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      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.
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      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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