3 Year Old Negative Blood Tests, Positive Enterolab: Need Advice

[arlingtonmom]

I'm new to the board, and looking for some advice. My three year old son is being seen by a ped endo because he has fallen off his growth curve. He also has loose stools (not diarrhea) and sometimes complains of stomach aches. As part of his screening the endo ordered the celiac blood panel. He has the DQ2 gene, but his other blood tests for antibodies were negative. The endo said we could dismiss celiac as the cause for his growth problems, but I wasn't satisfied. I ordered the Enterolab test, and his results came back that he was gluten sensitive, but was not yet having an autoimmune reaction. They advise that he be put on a permanent gluten free diet, and expect that if he continues to eat gluten he will have an autoimmune reaction

I'm not sure what to do now. I've made an appointment with a ped GI at Georgetown, but what if she wants to scope him and he's gluten intolerant but not Celiac. Won't his scope come back negative. Can they tell anything regarding non-celiac gluten intolerance from a biopsy. I know I have the option of going gluten free, but I'm concerned that it will be difficult to tell the effect because growth catch up may take a while to monitor, and he's only three so I don't know if he'll be able to accurately communicate how he feels. For some reason I feel the need to have a definitive diagnosis before making a life altering decision on his behalf. I'm already being treated like I'm paranoid by some family members.

Anyway, if anyone can give some guidance on whether a biopsy can show anything if he is non-celiac gluten intolerant, and how growth was effected once your child went gluten free I'd really appreciate it. If anyone can offer general guidance or guidance regarding Enterolab I'd also appreciate that input. Or, if anyone has experience regarding negative blood tests in young children I'd love to hear it.

Thank you.

[snomnky]

My son at 1yr tested negative for the antibody and positive for only one gene marker. He continued to have symptoms and after a horrible reaction we decided to do an immediate biopsy (his ped GI was concerned as well and admitted us for the biopsy) they did find severe gastritis and bleeding, severe damage to his small intestine diagnosed as Celiac, and damage to his colon presumably from other food allergies. He has been gluten free since then with no problems. I have done a ton of research and came to my own conclusion that the blood tests just aren't accurate at such a young age and the only real test is going gluten-free and seeing a change. My son is two next week and although he is short, he is plenty heavy and is growing well (we also saw a big drop on his growth chart at 1yr, he actually was loosing a lb a week) I too just wanted to know what was wrong with my boy, that is why we agreed to the biopsies (he also went through another full day of testing, x-rays, and later two days of allergy testing and food challenges) My family thought i was just paranoid too, especially my husband.

I hope that helps a little. I know how tough it is.

[sadiesmom]

I wish I had an answer for you - because it would mean I had an answer for myself. I am in a very similar situation with my 2 1/2 year old daughter. We went to a Ped GI when she was 22 months because of the lose stools and the low weight gain. (She was only about 20 pounds at 2 years old. The blood panel was negative except the hereditary marker which was positive. We even did the biopsy. It was not as bad as i had imagined - but I understand not wanting to do it! That was negative. Her Ped GI told me it was okay to try the gluten-free diet. I never did it well - we avoided most gluten - but I was way too lax and I am sure she got some gluten every day. In spite of that. She started gaining about 1 pound a month. When we just had her checkup I confessed to the doctor that I never did gluten free - but probably more gluten light. He said that it was not the diet then that made the difference and that he was pretty sure it wasn't celiac or a tiny bit of gluten would have made a difference.

At any rate - that is where we stand now. I too am afraid of committing to a diet that she doesn't need. And I really hate myself for not just sticking steady to the diet. But I really wanted a positive diagnosis before the diet - and it doesn't look like that is going to happen.

I don't really understand gluten intolerance vs celiac. My only understanding is that you treatit the same way with a gluten-free diet.

Anyway - I am sorry to not have anwers for you - I just wanted you to know that we were in similar situations and that I understand how difficult it is to manuveur throught all this gray area.

Amy

[arlingtonmom]

Sadiesmom and Snomnky,

Thank you so much for your thoughtful responses. It does make me feel better to now I'm not alone. Good luck with your children.

[janelyb]

In my humble opinion, if he has the gene that means he could one day develop celiac so why not just go ahead and put him of the gluten-free deit now. And if he is already showing the early signs of celiac it is possible the damage might already be happening but just not bad yet...just imagine where it could be 5 yrs from now....

So I would use that test as a baseline and limit or completely cut out gluten. Remember if he has one gene he got it from either mom or dad.....So mom and dad might wanna get some tests done as well.

[Eriella]

I agree with Janely, get tested yourself and then consider going gluten free hardcore and seeing where you are 6 months from now. If there is no improvement, do a gluten challenge (yay for real pizza!!) and see if it is the gluten. Worst case is that you spent 6 months trying a diet unnecessarily, best case is your son feels so much better.

My experience is that I am gluten sensitive and most likely have been since I was born (I had problems with the formula and never had a normal bowel movement (nor knew what was "normal" to try to fix it)). All of my antibody tests come back negative and I have not had an endoscopy because it would not change my prognosis. Even if you son is "just" gluten sensitive/intolerant and doesn't have celiacs does not mean he should be eating gluten. If he feels better, looks better, and gains weight by eating gluten free, by all means try it.

As far as an endoscopy goes, I believe it would only show if it is celiacs. There are benefits to knowing whether it is celiac or non-celiac gluten intolerance, but in the end it really doesn't make a difference. The treatment is the same and the reactions can be just as severe. What I would do is try the diet, then if you see positive results and need to know which version he has, get tested a few months from now. There will still be damage.

Good luck!

[arlingtonmom]

Thanks so much for everyone's help. I just went for my own blood tests yesterday, so we'll see what they say. We're going to see a ped GI in a couple weeks, and I'll discuss our options with her. But, I think our plan will be to try the diet for six months, as you've suggested, and see how it goes. What a great resource. Thanks again.

[Nic]

Hi, I just wanted to mention that my son tested a high positive through the blood work and the doctor was concidering the biopsy to be a confirmation but when he got the results, they were negative. Because there was such a contradiction between the blood and biopsy, the doctor had more blood drawn and sent that to Prometheus labs in California and the biopsy to Columbia University in NYC. Prometheus confirmed that his blood was consistant with Celiac and he was carrying the DQ2 gene and Columbia confirmed villi damage consistant with Celiac. I don't know what was the problem with the first lab that tested the biopsy. My point is that these tests seem to be crazy as far as reliability and if a person responds positively to the diet, whether they be Celiac or gluten intolerant, then gluten free is what they should be.

Nicole

[NoGluGirl]

I'm new to the board, and looking for some advice. My three year old son is being seen by a ped endo because he has fallen off his growth curve. He also has loose stools (not diarrhea) and sometimes complains of stomach aches. As part of his screening the endo ordered the celiac blood panel. He has the DQ2 gene, but his other blood tests for antibodies were negative. The endo said we could dismiss celiac as the cause for his growth problems, but I wasn't satisfied. I ordered the Enterolab test, and his results came back that he was gluten sensitive, but was not yet having an autoimmune reaction. They advise that he be put on a permanent gluten free diet, and expect that if he continues to eat gluten he will have an autoimmune reaction

I'm not sure what to do now. I've made an appointment with a ped GI at Georgetown, but what if she wants to scope him and he's gluten intolerant but not Celiac. Won't his scope come back negative. Can they tell anything regarding non-celiac gluten intolerance from a biopsy. I know I have the option of going gluten free, but I'm concerned that it will be difficult to tell the effect because growth catch up may take a while to monitor, and he's only three so I don't know if he'll be able to accurately communicate how he feels. For some reason I feel the need to have a definitive diagnosis before making a life altering decision on his behalf. I'm already being treated like I'm paranoid by some family members.

Anyway, if anyone can give some guidance on whether a biopsy can show anything if he is non-celiac gluten intolerant, and how growth was effected once your child went gluten free I'd really appreciate it. If anyone can offer general guidance or guidance regarding Enterolab I'd also appreciate that input. Or, if anyone has experience regarding negative blood tests in young children I'd love to hear it.

Thank you.

Dear arlingtonmom,

I tested seronegative, but am Celiac. Some more recent reports have found that those who test seronegative actually have those most severe cases of Celiac. I think you were very wise to do the lab tests. The gluten-free diet is good to be on! I had digestive issues from birth. It got worse and worse as I got older. Now, at 24, I finally know why.

My doctor says she has had a handful of patients with negative serology who were Celiac. All of my ailments are typical with it. I lost my gallbladder at 20. That is very uncommon. Ovarian cysts are another problem I have had. The stomach problems became so severe, I did not know what to do. The nausea was unbearable, the reflux ended up being so bad I ended up having to sleep practically sitting straight up despite being on Prilosec twice a day, and the colon problems were awful. I used to belch so loud and forcefully it was embarrassing.

My holistic physician said that those blood tests are not that accurate. I agree. I always had a feeling they were wrong.

They were done several years ago. What is really scary is how many G.I. docs do not know anything about it! You would not believe how many told me there was no way I had Celiac before. These idiots think they are God in a labcoat!

I would not put your child through the testing if it is not necessary. That is hard on your body. I think doing the diet is your best bet. The biopsy is not always positive either, especially if you are going gluten-free already. You must consume gluten for a while before the test in order for it to be accurate.

Sincerely,

NoGluGirl

P.S. I am PMing you with a great beginner's list to help you out!

[arlingtonmom]

No Glu Girl,

Thanks for the list. It was really helpful.

[NoGluGirl]

No Glu Girl,

Thanks for the list. It was really helpful.

Dear arlingtonmom,

You are very welcome! Anything to make it easier! This is not the world's most convenient diet! There are so many things that are unsafe. Luckily, due to calling manufacturers and hunting lists, and talking to other members, I have found out those foods were okay.

Sincerely,

NoGluGirl