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The Waiting Game

Birdie19

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Birdie19 Rookie
Birdie19
Posted
  • Author

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
mushroom
Posted

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
mamaupupup
Posted

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
mamaupupup
Posted

...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
MitziG
Posted

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
Birdie19
Posted
  • Author

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
Cara in Boston
Posted

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
Birdie19
Posted
  • Author

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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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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