Damaged Vili But Negative Blood Tests

[Minniepotter]

My 5 year old son has had GI troubles since birth. Constipation, DGE, GERD, Colitis, and duodenitis. He also develops kidney stones, and has a lot of the other non GI symptoms of Celiac. Mouth sores, itchy skin, fatigue, and of course poor growth.

He takes prilosec and pepcid for his GERD, pentasa for his inflamation, e-mycyn for his DGE, potassium citrate for his kidney stones, miralax and benefiber for his constipation, courses of flagyl for his bacterial over growth, probiotics, and fish oil. and all though all these medicines help him. I feel like we are just putting band aids on him and not really taking care of the problem.

We have an appointment with his GI coming up soon, and I just want all my ducks in a row for it.

I have never noticed any connection with foods and his symptoms other than high fat foods make him really ill, and he can't handle raw veggies, nuts or seeds of any kind. All his allergy testing comes back fine as well.

He's been tested for celiac 4 times now, but each time his blood comes back negative. He has low IgA So I know this makes it more difficult. I have read some places impossible to diagnose by blood. Is this true?

His last scopes showed flattened villi and visibly his duodenum looked like something out of a science fiction movie. and we tested for celiac yet again, but she didn't test his IgG Ttg, just the standard celiac screen, which I know won't give us an answer because his total IgA is low.

How do you test someone who has low IgA? Can we go by biopsy alone? Is villi damage, villi damage? I mean is there something in the biopsy that says "this damage is for sure caused by celiac"?

I have also read here that there are other causes for damaged villi other than celiac. and we have treated him several times for SIBO with amazing results since his last scope a year ago, and this COULD be the cause for his damaged villi, right?

He has a 20 year old cousin with crohns/colitis

her biopsies and blood came back clearly negative for celiac

and I know that this is more the direction the GI is leaning, but IF by chance it really is celiac how wonderful to be able to make him well by diet alone. Yes, a difficult diet indeed, but the way his life is going now a difficult diet would be a piece of cake (no pun intended)

[ravenwoodglass]

I would give the diet a good strict try for him for a couple of months. The biopsy was positive and with low total IGA you are correct that would cause a false negative on blood work. You have nothing to lose by getting him on the diet and everything to gain.

[Skylark]

I thought the test in low IgA people was anti-gliadin IgG? The newest test is anti-deamidated gliadin IgG and it's supposed to be really good. You might also ask your doctor for the HLA genetic testing. It doesn't rule out celiac, but it gives you an idea of the risk for celiac vs. Crohn's. Yes, other conditions can cause villous damage on biopsy and SIBO might do it.

As Ravenwoodglass points out, you should absolutely try him on the gluten-free diet to see what happens. You have nothing to lose and everything to gain.

[RiceGuy]

I agree with the others. You should try the gluten-free diet and see how it goes. Besides, there are countless doctors who insist on seeing the damaged villi before making a diagnosis of Celiac, and it seems you've got that.

[Mari]

Check out the Specific Carbohydrate Diet online - kids like it and mention it to the cousin as it's good for IBS. The theory and more information is described in the book 'Breaking the Vicious Cycle' by Elaine Gottshall. Think about getting the DNA marker test done - there are several labs online where you can order it and Enterolab.com offers the antibody tests also. This will tell you if he is predisposed to develop celiac disease and there are tables online which can tell you how high his risk is of developing celiac disease.

[Skylark]

The Enterolab antibody tests are of no use for someone who is low IgA (assuming they're of any use at all), and the genetic tests are merely interesting information and not diagnostic. Save your money.

[mushroom]

It is so interesting, the approaches of different doctors Some will only do biopsy on positive blood test - if this is negative with a positive blood test, no diagnosis. Some will do biopsy but if positive, no diagnosis unless positive blood test (even when with low IGA blood test will never be positive.) Some will diagnose on positive blood test, negative biopsy, and positive response to diet. Some would diagnose on blood, positive response to diet and possession of a predisposing gene. Some will just say if you respond to the diet then you probably have celiac. So there is no 'standard' standard for making the diagnosis The flattened villi used to be called the 'gold standard' - now that they know other things can cause flattened villi, many no longer believe this to be the gold standard.

For a child it is important to get a diagnosis if you can. Sometimes this requires going to a recognized celiac center/doctor. The importance arises from the special education plans needed in the school system to keep the child safe from gluten in the classroom, and to excuse meal plans in college.

For adults, unless you personally need the diagnosis to help you stick to the diet, the diagnosis really doesn't matter, except to rule out that there is not something else that is being missed. If the diet cures all your symptoms, then that probably is not the case.

At any rate, when you have exhausted all possible avenues of obtaining a diagnosis for your child, please do try the gluten free diet as so many parents have experienced such total relief with the disappearance of all their child's symptoms.

Good luck to you and your son.

[Minniepotter]

Thank you all for your replies. I'm pretty sure a gluten free diet is in our near future whether IBD or celiac, but not until I'm SURE I'm not going to mess up a celiac diagnoses. If that makes any sense at all LOL

The diagnoses is very important to me. I want Eric to take the diet seriously, I need all his care givers to take it seriously as well, and without that diagnoses, I may not even take it as seriously and as strictly as needed. I do know that gluten free can help with IBD, especially while flared up, but... I know that if my child gets on a eating strike because he's not well, and wants his frosted shredded wheat, or whole wheat pancakes, or his favorite crackers/cookies ect I will give it to him without that diagnoses.

His old GI biopsied because he was positive he was celiac after meeting him, so much so that even before testing him he gave us celiac information to take home and put in a referral to a nutritionalist. He specialized in celiac. It was his thing, and I believe he was disappointed his tests all came back negative including his biopsies, because after that he lost interest in Eric, and started seeing us only once a year.

His current GI told me she was positive he didn't have celiac with all the testing the first GI ordered. He was very very meticulous. He ordered everything and repeated everything. She only biopsied his small intestine because I told her to, and because of how visibly it looked in there.

He's never had the genetic testing though... maybe I'll look into that, but

I'm not impressed with entrolab. I personally think it's a crock. I hope in the future I am proved completely wrong though. How wonderful that would be for so many people, but until that day......

[psawyer]

I'm going to add a link to Eric's duodenum, but since it has personal information on the pictures of his scope I want to be able to delete it later if that's O.K.

You should be able to edit your post for up to 48 hours after making it, but the easiest way is just to delete the image from PhotoBucket, thereby breaking the link.

[nora-n]

There are IgG versions of all celiac tests except the EMA test!

Actually, lots of celiacs are IgA deficient, and they even recommend testing IgA deficient patients for celiac for that reason. I forgot where I red that, maybe here some years ago.

With the general population, IgA deficiency is rare, but it is not uncommon with celiacs.

Still, 20% of diagnosed celiacs with lots of villi damage have negative blood tests, and this implies the biopsy is the gold standard.

Bacterial overgrowth is known to cause blunted villi.

There was someone here who did not improve on a gluten-free diet, and he had a positive biopsy and negative bloood tests. Turned out his condition was caused by bacterial overgrowth, I forgot if it was called SIBO.

So if the diet does not help, think about SIBO, especially since treatment did work.

the gene test might help or not, because there are several people here without DQ2,5 and DQ8.

[T.H.]

Have you checked out Fructose malabsorption, as well? It probably wouldn't be the only problem, but it involves a LOT of foods, fruits, veggies, and grains. Might not be anything, but a quick look at a sample diet would likely give you an idea about whether the problem foods for this condition are problem foods for your little one.

The following site lists a lot of the problem vs. good foods.

Open Original Shared Link

Added tidbit, about the 'sure he doesn't have celiac disease' comment by your doc. In Europe, many doctors test every few years for celiac disease, period, because it is getting so common and can trigger without even noticing the symptoms. There's no such thing as a conclusive diagnosis, years down the road, unless the little one has no genes for this disease, at all.

Also, from what I've read here, some children have been diagnosed as positive, based on test results that sound exactly like your son's, after they do one final test: go on a gluten free diet and see if he improves. the fact that your doc isn't doing that is...troubling. Doesn't sound like a doc. who is celiac knowledgable.

[hoot]

Insist they take all the necessary bloodwork, or have it done yourself, thus bypassing your doc. Get a malabsorption stool test and gene test, too.

Then put your kid on a gluten free diet for 3-6 months, see how he reacts to it. If he reacts positively, symptoms weaken and disappear, but your doc still refuses to diagnose, then switch docs until you find one who does, because different docs diagnose by different standards, as had been said here already.