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Help! Celiac Blood Panel Ordered After gluten-free For 45 Days?

gf family 2011

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gf family 2011 Newbie
gf family 2011
Posted

I pretty much diagnosed my 2.5 year old with gluten issues. We had just moved to a new state so we couldn't get into a new doctor right away, that whole "new patient" thing. So we went on the gluten free diet anyway, and VOILA! No more D (she'd had it all her life), no more reflux, no problems. Anyhow, took her to see the new doctor last week. He had never dx'ed someone with celiac or gluten sensitivity. I gave him a detailed food and symptom journal of her elimination diet and then reintroduction (5 bites of cinnamon roll = D for 4 days, miserable) which he looked over. He pulled out his iphone, looked up celiac, and diganosed her with "gluten sensitivity" and says we don't need to see a specialist unless we want to put her back on a gluten diet. (Seriously!?!?)

Anyhow, he's ordered a CBC, chem panel, and a Celiac Blood Panel for her. But if she's been gluten free for 45 days now, except for the twice we accidentally glutened her (chili soup and soy sauce, oops!), and the once we did it on purpose, but that was at the end of January and it's now mid February. Since she's been mostly gluten free that long, will the Celiac Blood Panel be accurate?

I'm hoping to maybe write him a letter to see if he can order a GENE panel instead of a blood panel, because I feel like the blood panel won't be accurate. I will attach information and such for him to look at.

I personally feel that the diagnosis of "Celiac" vs "Gluten Sensitivty" is important, because true Celiac can do lifelong damage, rather than just temporary effects. I feel like this diagnosis will be important for doctors in the future, as well as for my daughter when she's a rebellious teenager who wants to eat pizza like her friends. :)

Thoughts??

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mushroom Proficient
mushroom
Posted

Thoughts, as requested.

Gluten sensitivity can also do lifelong damage. It's not something to be referred to as "just" gluten sensitivity.

Yes, it is likely that the blood testing will be negative now, although an endoscopy might still show positive.

Doctors are only just starting to recognize that gluten beyond caliac disease is a problem to be reckoned with, and the schools still require a note from a doctor (usually) saying the child has to be gluten free, so if you can get that kind of note from your doctor, you don't need the celiac label, and then there won't be future insurance issues either about the diagnosis of celiac, although as medicine catches up gluten intolerant may be recognized by them as just as bad.

As far as the genes, they only test for DQ2 and DQ8, whereas there are other genes known t be associated with celiac disease elsewhere in the world. Even then it is not diagnostic; it only tells you if you are predisposed to develop it, so it is just one small piece of the puzzle.

Yes, seriously, after you have been gluten free for a month and a half, it takes 2 months of a full gluten diet to redamage the body sufficiently for either the blood tests or biopsy to be accurate.

eatmeat4good Enthusiast
eatmeat4good
Posted

The important thing is you know what the problem is and you can control it.

If the Dr. diagnosed Gluten Sensitivity then that should satisfy any school notes your child may need.

Some researchers believe that there is a continuum of symptoms starting with gluten sensitivity and ending in full blown Celiac. If one accepts that premise, then it would be far preferrable to be diagnosed with Gluten Sensitivity since that means the problem was caught way early in the process of developing symptoms.

Gluten Sensitivity is every bit as serious as Celiac.

In my opinion, a good Dr. would say to you that there is no reason to harm your child with gluten to satisfy the need for testing as the end result will be that the Dr. will tell you to avoid gluten. You already know that.

Be really glad if the tests are negative...that means the gluten free diet is working and she doesn't have antibodies. That is something to be happy about.

I really wouldn't worry about the test if being off of gluten is making her healthy. Thank god you found out on your own. Bunch of us don't. My son was 16 before I realized all the flu-like episodes were related to gluten. And still Dr.'s wouldn't test since he is clearly not underweight. I had to decide not to care about the tests because the Dr.'s didn't care to test us. It's ok though, cause I got the answer now thanks to Celiac.com.

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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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