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The Waiting Game


Birdie19

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Birdie19 Rookie

In theory if it is gluten that is causing the elevated labs if we go gluten-free then the labs will go back to normal range. Right?


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mushroom Proficient

It can take a while for labs to normalize - it is not an immediate thing, quicker for some than others. The symptoms are a better guide than the labs.

mamaupupup Contributor

Your plan sounds really solid!

Do your very best to find all the hidden sources of gluten too...playdoh...dogfood...fishfood...soy sauce, etc. I just glutened my kids today...shocked...trusted another "gluten free" Mom's bread...ugh!!!!!!!!!!!

Here are two Celiac centers from the Celiac Disease Foundation website. I'll see if I can find out specifically which doctor is "best".

MINNESOTA

Celiac Disease Clinic

Mayo Clinic

Joseph A. Murray, MD, Medical Director

200 1st St SW/Hepatology W19a

Rochester, MN 55905

507-284-2467

www.mayoclinic.org/celiacdisease

ILLINOIS

University of Chicago

Celiac Disease Center

Stefano Guandalini, MD, Medical Director

5841 S Maryland Ave Mailcode 4069

Chicago, IL 60637

celiac disease Info line: 773-702-7593

Open Original Shared Link

I personally feel strongly about going to physicians who are Celiac researchers. I had no idea how "young" this disease is and how much more the EXPERTS feel they have to learn!

mamaupupup Contributor

...And when you call the Celiac centers make sure you say:

1. We have a family history of Celiac Disease

2. My daughter has had a positive TTG test

3. She is symptomatic: She is 3 years old and wears 6X clothes because her tummy is so distended

4. We've taken her off gluten

I personally would not mention the negative biopsy when you are trying to get an appointment. Let that come out once you are face to face. If it comes up, say something like, "We are really looking to you as the experts to help us sort this out."

BTW our twin girls are 5.5 and weigh 32 and 34 lbs each. They are rail thin. They never had any constipation or diarrhea. Our ped GI could see and hear that their bellies were distended. I couldn't see it because they were so tiny. Your little sweet thing's body is definitely giving you clear cues--good for you for picking up on them!

MitziG Enthusiast

Go on the diet. An allergist cannot help you. When her constipation, distension and bloating start to disappear the first week, you will realize that yes, your daughter has celiac. Perhaps your dr will agree with you, perhaps not.what matters is you address it now, before she gets very sick.

Lowish positive numbers usually mean that intestinal damage is mminor. Damage is patchy, one spot can have healthy villi, the neext may be flattened. If your GI took only 1 or 2 samples, which is likely, he just missed it. 8-16 samples it what is recommended, but few drs do it.

The blood tests clearly show she is making antibodies against gluten. If you ignore this, not onnly will intestinal damage worsen, but she is likely to develop additional autoimmune diseases like hypothyroid, lupus, multiple sclerosis, sjorens, type 1 diabetes.

Please, please, please don't let that happen. A lifetime of undx celiac SUCKS, I can tell you firsthand!

Birdie19 Rookie

I am in complete shock!

Yesterday just to see, I limited as in cut out gluten in my kid for the day. I wasn't optimistic that anything would change I just thought ah hell let's try it.

The results were actually, SHOCKING!

She did have waffles for breakfast (trying to eat through our pantry before we do the switch). But then the rest of the day she had nothing with gluten in it. The results were astonishing. She took a 2 hour nap, something that is INCREDIBLY rare in our house. We didn't argue about anything because her behavior was REALLY GOOD! Today at daycare she had a relatively gluten free diet and daycare said the same thing. She took a nap, no arguing no tossing and turning nothing.

I am converted that is it. I am ready right now to start a completely gluten free diet. She was a TOTALLY different child! I can't believe it!

Even my husband is 100% convinced. We are doing it! YIPEE! A calm healthy happy child, I can't wait!

Cara in Boston Enthusiast

Good for you (and GREAT for her)

Be prepared for some ups and downs in the first few weeks. There can be withdrawal symptoms that look worse then gluten symptoms. Don't assume that the diet is not working and give up on it. Also, after a period of time being gluten free, your daughter is likely to become more sensitive to even smaller amounts. When you see symptoms again, don't assume the diet is not working, first look for possible cross contamination - even tiny amounts can cause problems.

Keep a log so you can revisit getting a "real" diagnosis later - when you show your doctor you were RIGHT.

Cara


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Birdie19 Rookie

Thanks, Cara! We are starting a diary. I told daycare, if it happens that she gets gluten it isn't a HUGE deal but I do want to know because we are keeping a journal of her symptoms and things that we see happening.

Who knows if it was the diet or a myriad of other things but today she is a different kid still. This morning she went into daycare, sat down at the breakfast table ate her breakfast and wasn't wiggling around and moving all over the place like usual and like the kid next to her. She sat calmly at the table for 15 minutes and ate her breakfast. That's another thing she wasn't shoveling food in like normal. She does that, she shovels it in so fast she can't possibly chew.

Who knows what is going on but the results I am seeing already are amazing!

Can it be that immediate? In theory if her body was so activated by the allergen, the immediate removal of an allergen would deactivate her system right? But it will take weeks to get the residual out of her system I am sure.

Thank you to everyone for the feedback while we made the decision to go gluten-free, it was extremely valuable!

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    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
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      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
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