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angelicasmommy

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angelicasmommy Newbie
angelicasmommy
Posted

hi. my name is rebecca. i have one little girl. she's 18 months. she started being tested for celiac's in december when she was 14 months. she dropped from the 50/75%ile between 6 and 12 months. she only techincally gained just over 2lbs between 4 months and 12 months. when we re-introduced solids to her at 9 months she wasn't able to keep them down. also she was put in daycare and was getting 2 bottles of formula a day and couldn't keep those down. and on occasion she couldn't keep breast milk down. at 12 months she only weighed 16.14. in december they did an IgA panal on her. it came back as her being IgA deficient, so we just went back in on the 1st of april to have an IgG panal done on her. i got the results back today. her levels were at 60, i guess normal is less than 20. so she goes in on the 22nd to have a biopsy done. i am really scared of this being done. she's so little at only barely 20lbs. has any one's child this young gone through this?

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Guest ajlauer
Guest ajlauer
Posted

Wow, that sucks! I mean.... I don't have a similar story or any real advice to give. But I have kids. I hope that everyone else tells you a biopsy isn't necessary!!! I can hardly stand having them draw blood on my Melanie - I can't imagine making one of them go thru a biopsy!!! It would seem to me that if <20 is normal, then a 60 would be a complete positive, and no need for biopsy!

While we're on the subject, I want to ask everyone: what is the difference between a biopsy and endoscopy? Do they both serve the same purpose?

Rebecca, best of luck to you and your daughter!! I hope it turns out that a biopsy doesn't need to be done!! Don't feel like you HAVE to do it, just because the doctor said so. If everyone here says it's not necessary.... and you feel in your soul that it's not necessary... then don't do it! I'm not a doctor, just a mother! Don't do anything based solely on what I say!! But in general, don't overlook your facts and instincts just to go along with a doctor!

lbsteenwyk Explorer
lbsteenwyk
Posted

Endoscopy is the term that refers to putting a tube with a camera on it down the esophagus and into the upper GI tract.

Biopsy is the procedure of taking a small tissue sample from the GI tract during the endoscopy.

avasmom Newbie
avasmom
Posted

Rebecca,

My daughter started undergoing all the blood tests to diagnose her condition in October of 2004 when she was 19 months old. The blood draws were the worst and she had several. Our pediatric gastroenterologist highly suspected celiac disease and recommended an endoscopy/biopsy for a diagnosis. We had the procedure done in January 2005 when Ava was 23 months old, weighing 21 pounds. Honestly, the hardest parts for Ava were getting her checked in and ready for the procedure and then her reaction to coming out from the anesthesia. The procedure itself was complete in about half an hour and we were able to take her home about an hour after that. We had our results in a few days (we live in Montana, and had to have our samples shipped to Denver for testing, so this added to the diagnosis time). I felt it was very important to have a solid diagnosis for my daughter and am very glad to have had her undergo the procedure. It means no more blood tests (for awhile at least) and really no more doctor visits for awhile, which became very traumatic for my doctor. We saw immediate improvements in Ava after putting her (and our whole family, basically) on a gluten free diet. She has gained weight and height and her energy is amazing. Her belly is shrinking and the bags under her eyes are better. We still have diarrhea issues, but I think that is because Ava was a stage 3 in the damage to her intestines and they will take 6months to a year to heal. I wish the best for your family and reassure you that this procedure is not as scary as it sounds.

angelicasmommy Newbie
angelicasmommy
Posted
  • Author
Wow, that sucks! I mean.... I don't have a similar story or any real advice to give. But I have kids. I hope that everyone else tells you a biopsy isn't necessary!!! I can hardly stand having them draw blood on my Melanie - I can't imagine making one of them go thru a biopsy!!! It would seem to me that if <20 is normal, then a 60 would be a complete positive, and no need for biopsy!

While we're on the subject, I want to ask everyone: what is the difference between a biopsy and endoscopy? Do they both serve the same purpose?

Rebecca, best of luck to you and your daughter!! I hope it turns out that a biopsy doesn't need to be done!! Don't feel like you HAVE to do it, just because the doctor said so. If everyone here says it's not necessary.... and you feel in your soul that it's not necessary... then don't do it! I'm not a doctor, just a mother! Don't do anything based solely on what I say!! But in general, don't overlook your facts and instincts just to go along with a doctor!

"It would seem to me that if <20 is normal, then a 60 would be a complete positive, and no need for biopsy!"

angel's GI doctor said that the reason they want to do the biopsy is because the IgG blood test isn't as acurate as the IgA blood test, and because angel is IgA defecient, that test doesn't work. i'm going to have the biopsy done because i want to know for sure that this is what she has.

momof2 Explorer
momof2
Posted

My daughter was 14 months old and weighed only 16 lbs when she had the biopsy done. It was a hard decision, but we are glad we did it. She is so healthy now, that you would never know that she had been so sick. If we didn't have the biopsy, looking at her today, I would doubt she has celiac, but since we had that biopsy, I am confident in knowing she was positive, and we aren't living this gluten-free lifestyle for the heck of it. I think you are doing the right thing in getting the most accurate test done.

Good luck with everything!

Guest katerismom
Guest katerismom
Posted

Hi!

My name is Amy and I have a 20mo. old daughter with Celiac. She was 14 mos. and 16lbs. at the time of her diagnosis. She had the blood test taken which came back with results like none other my dr. had ever seen (in favor of a Celiac diagnosis) Her AGA IgG and TTG IgA levels were over 100, and her AGA IgA level was over 60. Even with these strong results we still chose to do the biopsy. The procedure took less that 30 minutes and overall was not near as tramatic for my daughter as the blood tests she had to undergo. Now, we have a definate diagnosis and are very happy we did the biopsy. We know that we aren't dealing with some other disease and aren't wondering if it is really Celiac. We can tell our friends and family with confidence what she has and can be asssured that they will take us seriously when discussing her diet. We were able to get her in for the biopsy within three days of the blood test results. Because your daughter will have to stay on a gluten containing diet until the biopsy, I suggest you get her in for the biopsy as soon as possible so you won't have to prolong her illness. Insist to the drs. that she get in and get the test done. If you aren't able to get her in soon, I would rethink doing the biopsy. My daughter was so sick, it would've killed me to keep giving her the poison called gluten for very long. My husband really took over witht he drs., insiting that she get in for the biopsy within a week. I certainly know some families who have chosen not to do the biopsy and are comfortable with their decision also. My daughter, six months later, is 9 pounds heavier, very energetic and a different child. We recently redid the blood test which came back completely normal for all four tests. She is a different child for sure!

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calimamaof4 Newbie
calimamaof4
Posted

My name is Anja and my daughter is 17 mos old. She weighs just over 22 lbs, has Cystic Fibrosis and was just tested for celiac disease. The levels she had were IgG levels of 83 and IgA levels of 32! (or maybe they were reversed, but those were her #s) Even with those being a definite positive for celiac disease, we just had the biopsy done yesterday. It wasn't easy watching her go under the general, but the whole procedure only took 20 min. We checked in at 8 am, procedure was done at 9:30 am and by noon we were on our way home. It was very easy and well worth it. We will have the defininte diagnosis on Friday. I don't suspect anything but a positive, but would feel SO blessed with a neg. Ya right! Wishful thinking I guess with those #s.

Anja

flagbabyds Collaborator
flagbabyds
Posted

Just to let you know, I'm not a parent but I thought that this would be revelant...

I was in the hospital from when I was 17 months old, to when I was 20 months old, on and off in the hospital starving to death, Had so many tests run on me my parents even lost track. They were so happy to finally get the diagnosis, they didin't even question the diagnosis. I went through the procedure, but I don't remember anything. NOthing about those three months. I think that you should go through the procedure because if it is a defenite diagnosis, then it will give her less motive to cheat, because for now, the only way it is accepted and you want her to question the diagnosis at all. She won't remember this when she is older, but it is good to get it over with before she will remember it. IF you are really scared, talk to the local hospital and ask them if they can help you feel better about her going throught the procedure all by herself. They probably go through this at least twice a day, maybe more, they should be able to help you the best they can.

IT's a very fast procedure. She will be out of anethesia within an hour.

Good luck! ;)

Boojca Apprentice
Boojca
Posted

Just one more positive experience to add to your confidence. My son was 2 1/2 when he had his....and his levels were 250 with below 30 being normal! We did the endoscopy/biopsy and whatta breeze! I wish the whole ordeal had been that easy...the worst part was getting the IV into him, but after that it was a (gluten free) piece of cake!! In fact when he woke up (about 45 minutes after the procedure was done) the very first thing he asked for was not mommy or daddy, but McDonald's! Geesh.... I had hoped he'd be sort of out of it and lay low all day after that...no such luck. He was off and running as soon as we got home. Trust me, this will be harder for you than for your child.

Bridget

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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