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So Frusterated! Still No Answers!

mommyetb

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mommyetb Apprentice
mommyetb
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative! Now what? Maybe we don't belong here! I thought he was doing so much better on gluten-free diet. His skin is better, he sleeps better, no more vomiting or "D". Now the doc wants us to decide if we want to do a biopsy. But he is on gluten-free now so the biopsy would not work right? Oh, what is wrong with this little man? They ruled everything else out when we were in the hospital for 4 days. Celiac was really the only thing left. Everone was pretty sure that is what it would be but now it is negative! I am so frusterated! :wacko:
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Rachel--24 Collaborator
Rachel--24
Posted

How old is your son? Tests can be unreliable under the age of 2. Actually the tests can be unreliable at any age but particularly under 2. If he is improving on the diet he obviously is intolerant to gluten. He may not have Celiac but an intolerance can cause the same symptoms and treatment is the same whether he's Celiac or intolerant. Going ahead with the biopsy is a personal decision but he should not be started on the diet if you plan on further testing.

Guest nini
Guest nini
Posted

your best answer is the fact that he has responded positively to the diet. The tests are extremely unreliable, especially in children. My daughter's bloodwork was inconclusive (but only because they did not do the correct tests) She did NOT have a biopsy and never will, but she most certainly IS gluten intolerant. She reacts violently and immediately to gluten and is such a different, healthy child without it.

I would suggest keeping him gluten free, do not worry about further testing. Accept that he is simply gluten intolerant and be thankful it was discovered before it became full blown celiac.

You absolutely belong here. Don't give up. Trust your instincts. You know that gluten is the problem, what more do you need to know? If he did have a biopsy and IF it confirmed damage (highly unlikely at this point if he's been gluten-free) the treatment would still be the same, a strict adherance to the gluten free diet and that diet will heal any existing damage.

Guest greengirl
Guest greengirl
Posted

I understand your frustration! I went gluten free despite negative bloodwork and negative biopsy (although

they did find intestinal ulcerations and inflammation, just not the typical flattened villi of Celiac). I have been through many other tests including camera capsule endoscopy, small bowel barium test, and small bowel enterocyclis (really nasty, nasty test!!). Nothing was conclusive, until I ordered the gluten sensitivity stool and gene panel from Enterolab. My Iga was elevated, indicating a gluten sensitivity and I found out that I have 2 copies of the gluten sensitive/celiac gene, one from each of my parents. This was the validation I needed, despite the miraculous results of the gluten free diet. I am disappointed that my doctor was not able to give me any answers after all the tests I did, but I think this is pretty typical in a lot of cases.

It sounds like your son is much better on the gluten free diet, so stick with it!! It takes time for the intestine to heal, so a biopsy could still show damage, but if he is gluten sensitive and not Celiac you won't get a confirmation from the biopsy (although gluten sensitivity can do serious damage, as well). And even if he is celiac, some doctors won't diagnose it unless the villi is completely flattened. You don't want to wait until the damage is that severe for a diagnosis! Maybe check out Enterolab's website (www.enterolab.com). It is a non-invasive stool test and it can still detect gluten sensitivity and celiac even after a gluten free diet has been started (up to 24 months, I think.)

Good luck!

Christine

aikiducky Apprentice
aikiducky
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative!

Doesn't the low IGA mean that he's IGA deficient, or am I confusing things? It would mean that your son's blood tests for celiac will always be negative, even if his intestines were completely eaten away, because he simply doesn't produce the antibodies that they are looking for.

If he feels better gluten free, I hope you will keep him gluten free!

Pauliina

ravenwoodglass Mentor
ravenwoodglass
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative! Now what? Maybe we don't belong here! I thought he was doing so much better on gluten-free diet. His skin is better, he sleeps better, no more vomiting or "D". Now the doc wants us to decide if we want to do a biopsy. But he is on gluten-free now so the biopsy would not work right? Oh, what is wrong with this little man? They ruled everything else out when we were in the hospital for 4 days. Celiac was really the only thing left. Everone was pretty sure that is what it would be but now it is negative! I am so frusterated! :wacko:

For me the repeated neg blood tests caused years of disability and pain. Trust the dietary results the blood tests for many of us are worthless. If he is doing better keep him gluten-free and if you really need something on paper maybe Enterolab gene testing might be the way to go.

chrissy Collaborator
chrissy
Posted

your son is IgA deficient, so he needs to have a completely different testing done to know if he really has celiac. IgA deficiency is something that can go along with celiac, in fact, celiac can actually cause IgA deficiency. someone with celiac is 10x more likely to be IgA dficient than the rest of the population. one of my boys is IgA deficient. our ped gi had blood work done through promethius lab in california to do gene testing and some other fancy testing to see if he has celiac. i am just waiting for the doc to call me with the results.

christine

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    • knitty kitty
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