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1 Year Old Had A Pos Blood Test Neg Biopsy?!
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My one year old had a pos blood test only IgG was positive..her IgA levels were normal. Her IgG was a 19 (anything over 9 pos) she also had a whole mess of thing in her blood work that were high/low...she had her biopsy and its pretty normal?! Dr said he saw some spots but it wasn't enough to diagnose celiacs, but that we should go gluten free!? Im confused! What could cause her IgG levels to be positive if its not celiacs?

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In my opinion she should be diagnosed with Celiac Disease.  Symptoms plus positive antibody test in someone so young = Celiac Disease -- again, my opinion.  All this means is she is creating antibodies to gluten, but does not yet have damage severe enough on the Marsh Scale.

 

here is a link to an explanation of Celiac Typing:

 

http://www.celiac.com/gluten-free/topic/97163-typing-of-celiac/?p=827967

 

Now that testing is complete -- remove ALL gluten and monitor for symptom improvement -- keep a diary to bring to follow up appointments -- this would help if you should need an "official" celiac dx once your daughter enters school.

 

Hang in there Mom :)

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ps...make sure you have full celiac antibody panels run at 3mo, 6mo and then annually after that.

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Sounds very similar to our case.

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These children are tiny and not all positive blood work means celiac however our kids may not have damage either since they are so little which is what they use to confirm in endo and genetic testing is an only could be test also so just all puzzle peices as I have been told.

Unfortunately only time will tell.

What confuses me most is going gluten free skews the results but you need to for their well being so they have you do that and diagnose a lot of times on results from that in conjunction with those findings.

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These children are tiny and not all positive blood work means celiac however our kids may not have damage either since they are so little which is what they use to confirm in endo and genetic testing is an only could be test also so just all puzzle peices as I have been told.

Unfortunately only time will tell.

What confuses me most is going gluten free skews the results but you need to for their well being so they have you do that and diagnose a lot of times on results from that in conjunction with those findings.

 

This is why it is important to remain on gluten until testing is complete.  Once the tests have been run, there is no reason not to remove all gluten and keep a symptom log/diary.

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This is why it is important to remain on gluten until testing is complete. Once the tests have been run, there is no reason not to remove all gluten and keep a symptom log/diary.

This is where I get confused.. They recommed to go gluten-free bc after the endo testing is basically done until they are older. So your saying keep giving them gluten until they retest?

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This is where I get confused.. They recommed to go gluten-free bc after the endo testing is basically done until they are older. So your saying keep giving them gluten until they retest?

No, it means that after that first batch of testing is done, both the blood and endo, you can try the diet as a final test. If you wish to have testing done when the child is older, then a gluten challenge would be required (eating gluten for a period of time). However, if the diet resolves all of the symptoms then, imo, you have your answer.

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This is where I get confused.. They recommed to go gluten-free bc after the endo testing is basically done until they are older. So your saying keep giving them gluten until they retest?

 

I am saying keep them gluten free and keep a symptom log.  If symptoms improve that is another part of diagnosis.  Continue to monitor FULL celiac panel (minimally annually), remain gluten-free and IF there is a question down the road -- THEN determine if a gluten challenge is necessary.  Current testing leaves a lot to be desired -- it is my hope this will change/improve with time.

 

Keep in mind that once gluten free for some time -- it may become impossible to ingest any -- thus another piece of the puzzle.  I know how tough this can be to understand -- in our family -- my own kids tested negative when I was diagnosed...yet removal of gluten improved or removed all their health issues.

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Ok this makes sense. 

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I am having this problem with my 9 year old son. I took him off of gluten after he saw the GI a month before his endo and it came back negative. Now that my husband was diagnosed with celiac the peds GI wants me to put my son back on gluten so she could do the endo again. I explained to them that he was losing too much weight and had chronic pain and diarrhea and I didn't want to put him through that again. My whole family is gluten free (my husband, me, son (9), and son (5) we have all noticed improvements in our health because of it I don't even care to get the confirmed diagnosis. 

 

My son's pediatrician said since he has made such an improvement in health that she will write a prescription to the school that he cannot have gluten so we shall see how it goes.

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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