Debating The Next Step

[CrunchyChristianMama]

This is my first post on this board and I am so thankful to have found it!

My DD is 2 years old (b-day Sept. 21). When she was 18 months old we suspected something was up with her. She was TINY (only gained 1-2 lbs. in 9 months). She never had solid stools, though they weren't totally runny either. Then she started getting this horrible rash on her backside, blisters and all. She also really struggled with sleep.

We did the (Company Name Removed - They Spammed This Forum and are Banned) testing for food sensitivities. We found that she was severely sensitive to sunflower and moderately to gluten. We took her off both. Total change in everything. We thought there was a dairy problem though, but it didn't show up on the (Company Name Removed - They Spammed This Forum and are Banned) so we did a blood allergy test. It came up negative for everything and said she had really low antibody levels.

We kept her off gluten and whenever she would get some she would have a horrible reaction. Now, at almost 28 months old, she has gained 8 lbs. since we removed gluten and is doing much better.

We did the gene testing through Enterolab and it came up that she has both the Celiac gene and the gluten sensitivity gene.

So I'm debating what to do now. We are considering her to be Celiac for now. But, it would be nice to have some more conclusive testing for that. I just can't imagine putting her on a gluten diet again and dealing with the ramifications of that. She's been primarily off gluten for the last 9ish months except for a few slip-ups.

Any ideas on what would be best?

[MacieMay]

Have you talked to her Pedi about the testing? If he does not beleive in the enterolab testing then maybe you could get him/her to run another gene panel ( a blood test is a blood test) and based on symptoms and positive genes testing he could diagnose her with Celiac.

I don't recommend putting her back on gluten when she is doing so well and is so young. It's terrible to see them hurting.

Good luck!

[domesticactivist]

I agree there is not a good reason to put her back on gluten. If the people in her life are willing to keep her off gluten then go ahead and do it, since you know it works. That's the choice we made for our son. Someday your dd might want more information and a formal dx. I'd let her make that decision when she is old enough to make an informed choice weighing the potential damage and discomfort of reintroducing gluten against the benefit of a positive dx. There can be benefits to not having a diagnosis, too... One fewer reason to be denied health coverage.

[CrunchyChristianMama]

Why would they question Enterolabs results?

Getting in to her ped is a pain. He is so well liked that it takes several months to get an appointment and then you end up waiting at least an hour past your appt. time to get in. We mostly just see a naturopath that is a friend of mine, but she doesn't see any need to do any further testing or to verify a diagnosis of Celiac.

I think the real reason I want it confirmed is because my mom is questioning the diagnosis. She has some other reason for every symptom my daughter has and some other explanation every time she gets better or reacts. Ugh.

[tarnalberry]

We are considering her to be Celiac for now. But, it would be nice to have some more conclusive testing for that. I just can't imagine putting her on a gluten diet again and dealing with the ramifications of that. She's been primarily off gluten for the last 9ish months except for a few slip-ups.

You have some pretty conclusive testing already:

We kept her off gluten and whenever she would get some she would have a horrible reaction. Now, at almost 28 months old, she has gained 8 lbs. since we removed gluten and is doing much better.

It's unfortunate that doctors today want so much laboratory, "objective only" evidence that we don't trust the data right before our eyes. If we bang our head into a wall and it hurts, do we really need to measure our pain before we believe it's real?

[MacieMay]

Why would they question Enterolabs results?

Getting in to her ped is a pain. He is so well liked that it takes several months to get an appointment and then you end up waiting at least an hour past your appt. time to get in. We mostly just see a naturopath that is a friend of mine, but she doesn't see any need to do any further testing or to verify a diagnosis of Celiac.

I think the real reason I want it confirmed is because my mom is questioning the diagnosis. She has some other reason for every symptom my daughter has and some other explanation every time she gets better or reacts. Ugh.

I don't know?? Some Dr.'s don't believe in going to outside testing.

What about a Nurse Practioner? Is there any in the Pedi's practice? WE see the NP a lot!! I LOVE their approach. They are trained to treat holistically not just treat symptoms (like Dr's). It usually doesn't take as long to get an appointment either. Maybe if you can get in with one of them they could diagnose your daughter (and then you could get your Mom off your back). LOL! I have one of those Mom's too! ; )

Good luck!!

[Skylark]

Why would they question Enterolabs results?

Genetic results are interesting, but 99% of all Americans have a gene Fine labels as "gluten sensitive" or "celiac". Do you see the problem here? You send your money to Enterolab, you get a paper that says you have a gluten intolerant gene. May as well skip the testing as it's a foregone conclusion unless you're Indonesian, Japanese or from the Andes Mountains. Enterolab is the mail-order diploma of celiac testing. The antibodies are just as bad, as almost everyone with tummy trouble who goes to Enterolab comes up with anti-gliadin IgA. Those who don't are probably low IgA. Some people do find this extremely useful for manipulating family members or convincing themselves that their dietary response is "real".

The presence of a "celiac" gene is interesting and increases her risk, but 30% of Americans have DQ2 or DQ8. A so-called "celiac" gene is not a guarantee of celiac disease.

Getting in to her ped is a pain. He is so well liked that it takes several months to get an appointment and then you end up waiting at least an hour past your appt. time to get in. We mostly just see a naturopath that is a friend of mine, but she doesn't see any need to do any further testing or to verify a diagnosis of Celiac.

I think the real reason I want it confirmed is because my mom is questioning the diagnosis. She has some other reason for every symptom my daughter has and some other explanation every time she gets better or reacts. Ugh.

Unfortunately, none of the valid serum diagnostic tests can be performed without exposing her to gluten for a couple months and they are unreliable in small children to begin with. You do have a powerful confirmation not from Enterolab, but from her response to the diet and her reaction to gluten. You need to stop listening to your mom and prevent your mom from feeding anything to your child until she comes around.

Edited. Take her to a dermatologist and get the blistered rash biopsied and tested for dermatitis herpetiformis (DH), just outside the blistered area. DH is absolutely diagnostic for celiac disease. You should be able to provoke the rash with a lot less gluten than it takes to get the serum tests to work.