I Don't Understand How My Son Tested - Three Times

[megsybeth]

My son has been tested three times since he was one and a half, blood tests only, because of short stature, failure to thrive. I have to admit I was very cynical and didn't really pay attention to the first two rounds of testing, just heard he was negative. But now he's textbook celiac, gi problems in addition to growth issues. And I got myself tested and my numbers seem to be off the charts positive.

I was set to have him get an endoscopy on Thursday but canceled because I want to have the best GI possible do it. Current GI told me, "I've never seen a child with negative blood work test positive for celiac on the biopsy but apparently it does happen". I have heard it happens too but how common is it?

Is it really possible he could have celiac and benefit from the gluten-free diet even if he has no extra antibodies? I will put him on gluten-free diet no matter what and stay if it helps, but I don't want to miss something else.

[ravenwoodglass]

Yes it is possible to have celiac and have tests come back negative, even with adults but it is even more common with children. Since you are celiac it is even more likely he is also since celiac is strongly genetic. Your plan to have him go gluten free no matter what the tests results are is a good plan. Even if the tests are negative the doctor may give him a diagnosis based on the resolution of his symptoms once he is gluten free for a while.

[Roda]

Sounds like my oldest son. He has been blood tested annually since my diagnosis 4 years ago. Every time blood work VERY negative. It wasn't until 6 months after my youngest son tested positive for celiac that I began rethinking the whole thing with my oldest. Last year I did take him to a GI and she did a scope/biopsy. It was completely normal also. The GI knew regardless of the results, that I was at least going to trial him gluten free for 3 months to see if he had any improvements in his symptoms. All I have to say was it made a world of difference. I did let him eat gluten after three months to "test" it out and after a reaction, he decided he felt better gluten free. He has been gluten free for a year now.

He is not diagnosed with celiac, but is non celiac gluten intolerant. He goes for his one year check up(a little late LOL) next month.

[megsybeth]

Thanks! I have to say I'm actually happy to get the diagnosis if it will help my son. In addition to GI issues recently, very slow growth, he also has terrible attention problems, gets so fatigued, has a lot of motor issues. I know not to expect the world from going gluten-free but if there is something that will help him get the nutrition he needs to be his best and be as happy as he can be, I'm so happy if we've found it. And at least the gluten-free stuff can be written off on taxes for my diagnosis and insurance should cover a nutritionist for me, who can help with my boys.

It's all so new, just found out today. Taking it all in still.

[GFinDC]

The usual recommendation is to have a person eat gluten for 6 weeks to 3 months before the endoscopy. Antibodies may or may not build up in the blood stream before the damage is visible in the gut. Most of the antibodies are in the gut, not floating around the blood stream aimlessly. They go where the problem is and that is the gut. Some people never test positive on blood tests, but have damaged guts from celiac.

[ravenwoodglass]

And at least the gluten-free stuff can be written off on taxes

Do talk to your tax professional about this. The process is very complicated and requires you to note the cost difference between your gluten free items and the same item with gluten as you can only deduct the difference. It is also a medical expense so you can only take advantage of it if your medical expenses are over a certain percentage of your income. It may also flag you for a audit.

Do go with as much naturally gluten free food as you can at least at first to help speed healing.

I hope you are all feeling better soon.

[Darn210]

Just wanted to say that my son tested negative also but the GI was so concerned with his small stature that we did a 6 month gluten free trial (daughter is Celiac and had already been gluten free for 6 months at that point so it was not a big deal for me to take another kid gluten free). If my son had started growing, I know that this particular GI would have given him a Celiac diagnosis. However, there was no growth spurt and he went back to gluten.

Just sayin' . . . sometimes, especially in kids, you just have to try the diet. You do want to push for an official diagnosis, though, as you may need it for accommodations in school. When you talk to the GI, tell him you plan on a trial diet after the testing/endoscopy. My son's GI was monitoring weight and height during his trial and your GI may want to do that as well . . . all evidence to go towards an official diagnosis.

[Cara in Boston]

Do you know which blood tests were done? My son tested negative on most of the tests, and positive on only the IgG tests. His first doctor said he couldn't have it because the most common test (TTG IgA) was negative and he had no "classic" symptoms. By this time, I had tested positive too, so I knew to keep looking. We found a celiac specialist who did an endoscopy and found extensive damage. Weird thing, my endoscopy was negative. Regardless of our results, we both went gluten free and are feeling much, much better.

Cara

[megsybeth]

Hi Cara,

I had her fax me the results this time. I was a little confused because she only told me two results on the phone but I thought the panel was four tests. I'll write it down here. She said when she was ordering blood work that she was doing a "full panel" because the prior one was not complete.

Transglutaminase lgG Autoantibodies <3.0

Transglutaminase lgA Autoantibodies <3

Endomysial lgG Autoantibodies <1:2.5

[frieze]

Hi Cara,

I had her fax me the results this time. I was a little confused because she only told me two results on the phone but I thought the panel was four tests. I'll write it down here. She said when she was ordering blood work that she was doing a "full panel" because the prior one was not complete.

Transglutaminase lgG Autoantibodies <3.0

Transglutaminase lgA Autoantibodies <3

Endomysial lgG Autoantibodies <1:2.5

Where is the total IgA? without it, the IgA results are meaningless.

[mushroom]

Hi Cara,

I had her fax me the results this time. I was a little confused because she only told me two results on the phone but I thought the panel was four tests. I'll write it down here. She said when she was ordering blood work that she was doing a "full panel" because the prior one was not complete.

Transglutaminase lgG Autoantibodies <3.0

Transglutaminase lgA Autoantibodies <3

Endomysial lgG Autoantibodies <1:2.5

And she didn't do the DGP either, IgA or IGG

[Cara in Boston]

Yeah, looks like he didn't get the full panel or the most current tests. Even if he had, and they were still negative, I would ask for an endoscopy. Another "test" of course, is the gluten free diet. If you go that route, be sure your doctor is open to giving him a diagnosis based on a positive response to the diet - not all will. I felt much better after getting the "official" diagnosis since we will need it in order to make sure schools, camps, college dorms, etc. comply with our wishes and keep him safe.

Trust your instincts. Mom's just know.

Cara

[megsybeth]

Thanks, Cara and Neroli. I do think that the best thing for my son is to have a good endoscopy done BUT I don't think it's feasible now. I was already annoyed with this GI for a number of things but then she called me back with the results of these tests. She wanted to go forward with a colonoscopy and endoscopy which I had pushed for but she said, "Apparently people test negative on the blood work and then get a positive biopsy but I've never seen this". I knew then I didn't want her doing the scope. I'd decided to take DS off gluten no matter what but to put him under only to have someone who's not really up on celiac do the biopsy seemed crazy to me. I mean if she can't even order the right number of tests do you think she knows where and how to look for damage to the villi?

So when I got my positive test the next day I called and canceled thinking I would take my son to a celiac specialist. I do have him scheduled for an initial appointment with someone but it's in a month. Then it would be another month probably to get an endoscopy, get through with more blood work. I just can't do it. I might be wrong from a scientific stand point. But if my son grows, feels better, can concentrate more, starts to actually eat food, stops with the diarrhea/constipation lottery, that's really all that matters. And I do think I can find someone who can diagnose him on that.

[megsybeth]

Hi Everyone, My son's endoscopy is tomorrow. Also doing a colonoscopy so it's been a fun Halloween of liquid diet! I have an appointment with a celiac specialist at the end of November but decided to put my son back on gluten after a week off (he's been back on three weeks and suffering a lot) and have old GI do scope and I'll have all biopsy images, along with blood work sent to specialist.

I've read Peter Green's book and I have to say the tests still confuse me. I discovered there was a total LGA on his test, but it was above "celiac" section. It was 257 with normal range 40-350. But I guess it wasn't the same exact sample or lab, if that makes any difference. Because the celiac tests were send out and I think that one was in house. Also he had low ferratin (20, with normal range 22-322) which is a classic celiac deficiency I know. Also he had low glucose (not sure if that has to do with time of day or what he's eaten, but I'm always sure to have him drink and eat well before blood is drawn), low MCV, high platelets, low neutrophils, high eosinophils, low creatinine and a high BUN/Creatinine ratio.

I believe my son has celiac but if not, he does not seem like a healthy boy. I of course googled all the labs and the main theme seems to be these are levels you see when someone is dealing with infection, malnutrition or inflammation. GI doesn't seem concerned.

Wish us luck!

[GottaSki]

Hang in there Mom!

Good LUCK

[Darn210]

Hope everything goes smooth today . . . and hope you get some answers!!!

[megsybeth]

So we're back and everything went well except for the poor GI and her team who had to deal with my unsuccessful home clean out and the nurse's two unsuccessful clean outs once we arrived. Well, you can imagine.

Right before the procedure I handed the GI my lab results showing pretty clear positive on the full celiac panel. She was taken aback, "You have celiac!". Yes, that's why I told you last week I have celiac. And that's why I faxed the results after talking to your nurse three weeks ago. And that's why I faxed them again after telling you that I have celiac last week. And that's why I'm handing them to you a third time...

I then said, "It seems like I had lots more tests done, how about we do all those tests on him today while we have him under." She said no at first that she would suggest I get the gene test (ummm). But after the procedure she told me that she would order the gene testing on him and the full celiac panel, the "plus" panel, from Prometheus. I'm very happy. I asked her about other conditions and she doesn't think Crohns or colitis I guess because she doesn't think they could hold in stool. But she took some biopsies from colon for microscopic colitis.

Nothing stood out visually, a little redness that might be inflammation in colon and in esophogas and she took lots of biopsies, scattered in the upper intestine. She also said she requested lab to do special staining to look for is it "lymphocites" (sp)? Some sort of celiac marker.

[Cara in Boston]

Good for you. Now that he is done with all the tests, you can go 100% gluten free with him while you wait for results. DON'T give up if the tests are negative. The "final" test is the diet. If he responds positively to it, you know what you need to do.

Cara

[megsybeth]

Thanks, Cara. We'd already been pretty 100% gluten free at home since I went off and I took the baby off and was planning to take DS off after testing. My husband is really sweet and supportive. I told him that once my son is a little bit older we could probably bring regular bread back in the house, but right now he will just have too hard a time seeing his dad eat things he can't have. He said, no, I don't need bread.

I'm just trying not to get too hopeful. I know gluten-free will help with the diarrhea since it did for the one week I took him off. But I would be so happy if it would help him grow, concentrate more and have less clumsiness.

Either way, I have him scheduled to see a celiac specialist GI at the end of the month. I figure if she specialized in absorption issues, even if it's not clear celiac, she can help me test for deficiencies and monitor levels, which other doctors seem to have ignored.