Confused By Bloodwork & Gi's Uncertainty, But Endoscopy Next Week...

[mom2]

Hi - I don't know much about Celiac disease or testing for Celiac disease, so I'm hoping someone here might be able to shed some light for me or have a similar experience. My almost 4 yr old daughter was referred to a Pediatrician for being highly sensitive and irritable. Aside from being irritable, she has always been unusually small since around 6 months of age (around 3rd-5th percentile for weight/height). The rest of our family is generally thin, but average to tall in height so her growth has always been a concern. She's also pretty clumsy, weak, and tires easily. Other than those things, she is generally healthy (no real gastro issues that I notice). Anyway, the ped was going to refer us to an Occupational Therapist as he was thinking she has Sensory Processing Disorder, but decided to run some bloodwork first.

He checked her iron, thyroid and TTG (for Celiac?). Everything came back fine except her TTG was 108. He said anything under 20 was normal, so he was quite certain she had Celiac just based on that. My husband's grandmother did have Celiac, but I wasn't aware it was hereditary so never mentioned that.

Anyway, the Ped referred us to a Pediatric GI. He re-did her TTG test and it came back at 79. That was maybe 3 or 4 weeks later. Does it seem strange that it would go down by almost 30 points? We didn't have her on any sort of gluten-free diet, although she generally prefers rice, eggs, cheese over gluten foods anyway (but she does eat crackers and pasta a few times a week). As far as I know, the TTG was the only Celiac bloodtest they ran.

We go for an endoscopy/biopsy next week, but the GI didn't really sound convinced that we would definitely be getting a positive diagnosis and that most of the cases they see are TTGs in the 200s.

Is it common to have a semi-high TTG, but a negative biopsy, and then it turns out not to be Celiac?

I have a feeling the biopsy will be negative and then we'll be back to square one.

Thanks for any input!

Mel

[Skylark]

Hi and welcome to the board.

TTG is an autoimmune antibody. It is most commonly caused by celiac (90% of the time) but it can also show up in inflammatory bowel disease, rheumatoid arthritis, and less commonly in other autoimmune diseases like autoimmune liver or thyroid disease. With the growth problems and lack of obvious gastro issues it's most likely celiac. I would want to ask for a specific celiac blood test like DGP-IgG or anti-EMA.

Amounts of antibodies can shift around. Sometimes your immune system is more active, sometimes less. My thyroid antibodies never come back exactly the same.

Even if the biopsy is negative I would still try taking her off gluten to see if she starts growing better and feeling better. False negative biopsies are possible when damage is patchy or the Dr. doesn't take a lot of samples.

[mom2]

Hi and welcome to the board.

TTG is an autoimmune antibody. It is most commonly caused by celiac (90% of the time) but it can also show up in inflammatory bowel disease, rheumatoid arthritis, and less commonly in other autoimmune diseases like autoimmune liver or thyroid disease. With the growth problems and lack of obvious gastro issues it's most likely celiac. I would want to ask for a specific celiac blood test like DGP-IgG or anti-EMA.

Amounts of antibodies can shift around. Sometimes your immune system is more active, sometimes less. My thyroid antibodies never come back exactly the same.

Even if the biopsy is negative I would still try taking her off gluten to see if she starts growing better and feeling better. False negative biopsies are possible when damage is patchy or the Dr. doesn't take a lot of samples.

Thanks very much for the information. I guess if the biopsy is negative, I will ask for those other specific celiac blood tests. The GI said he would be taking 5 samples, so hopefully if there is damage he'll get the right spot.

[Cara in Boston]

She has symptoms, a family history, and a positive blood test. Even if the biopsy is negative, I would go gluten free as soon as the procedure is over. For peace of mind, have them take a blood sample for the additional tests at the same time as the endoscopy so you can go gluten free as soon as possible.

Again, don't assume she doesn't have it if the biopsy is negative. My blood tests were strongly positive and my biopsy was negative. My son has celiac (blood and biopsy) and all my symptoms vanished within weeks of being gluten free.

The doctor just thinks they didn't get a good sample (took 7 samples) or I just don't have any damage in my intestines YET. No reason to wait around for the damage to happen.

Cara

[mom2]

She has symptoms, a family history, and a positive blood test. Even if the biopsy is negative, I would go gluten free as soon as the procedure is over. For peace of mind, have them take a blood sample for the additional tests at the same time as the endoscopy so you can go gluten free as soon as possible.

Again, don't assume she doesn't have it if the biopsy is negative. My blood tests were strongly positive and my biopsy was negative. My son has celiac (blood and biopsy) and all my symptoms vanished within weeks of being gluten free.

The doctor just thinks they didn't get a good sample (took 7 samples) or I just don't have any damage in my intestines YET. No reason to wait around for the damage to happen.

Cara

Although I doubt the GI will give a formal diagnosis with a negative biopsy, I'm pretty sure her pediatrician will recommend we try going gluten-free whatever the outcome, to see if it helps. My husband wants to go gluten-free regardless as we are at the point of trying anything if it will help her to be a happier little girl. That's great to hear you had such a positive experience going gluten-free. Will the doctor re-check your blood at some point? I would imagine if the levels went way down after being gluten-free for some time that would support a celiac diagnosis?

[Cara in Boston]

My doctor formally diagnosed me with "gluten intolerance" since my biopsy was negative. That is fine with me. With my son's positive biopsy, I know it is more likely to be actual celiac and I know to be on the lookout for related autoimmune conditions. Since the treatment is the same, I don't see the point of further testing. I will need to have periodic blood tests for celiac anyway since I am a first degree relative - since I am 100% gluten free, they will all be negative. For my son, we wanted to make sure we had as clear a diagnosis as possible since he has years and years of school, summer camps, etc. to navigate.

Cara

[mom2]

I just wanted to post an update. We went for the scope/biopsy a couple of weeks ago. The GI performing the scope said everything looked good/normal, but the biopsy results would be ready in a couple of weeks. I just got a call, and even though things looked normal, the GI says her biopsy was positive for Celiac Disease and we are to start on the diet right away. I'm feeling a little numb, stunned at the moment. I have a house full of gluten and I'm a terrible cook

The next step is an appointment with a dietician. I'll be relying heavily on her help (and this forum). I need it.

I am happy in a way though, especially that her pediatrician thought to test for Celiac. Now I guess I should get my older daughter tested. She's the oppositive of my 4 year old though. My older daughter has boundless energy, very tall and athletic. However she has complained of bad stomach pains about every other day for the past year, so I guess it's worth looking into...

Thanks

[Cara in Boston]

Think of it as good news - most people go for years and years without knowing the problem. Also, starting the diet so young will make it easier - I can't imagine if someone told me to just give up gluten when I was a teenager or young adult (no beer?) I thought I was super organized and ready to tackle the diet when my son was diagnosed (we had lots of time to get ready while waiting for test results) but I was overwhelmed the first few weeks. We had tacos for dinner THREE times that first week because I just couldn't think of anything to make. There may have been some tears of frustration in the grocery store in the beginning too . . .it can be overwhelming.

Once you figure out what changes need to be made, shopping gets easy again. We kind of buy the same stuff week after week so you won't be looking everything up after a while.

A year later it is really no big deal - really.

Everyone in the family needs to be tested. Don't put this off - once you start the diet, chances are everyone will be eating less gluten at home - get tested FIRST.

Come back here if you need suggestions for snacks and meals - everyone is really helpful.

Cara

[Skylark]

It's great they caught it so early! It can be hard to diagnose celiac in little kids. It does make sense to get your older daughter tested, especially since she will probably start eating less gluten now so the testing will be harder in the future.

There's a lot of recipes and meal ideas on the board. You can absolutely learn to cook, and it's fun once you get the knack of it. Some people find cooking shows on TV or YouTube helpful because you can see how food should look at various steps in the recipes. You could also see if there are local cooking classes.

Cara's right about the grocery store seeming overwhelming at first. Try to shop around the outside of the store where the produce, meat, eggs, and dairy sections are are since that's where you find the naturally gluten-free food. Reading the labels on processed food can get pretty overwhelming. I'd recommend getting a rice cooker too. They are super-convenient.

[mom2]

Thanks Cara. That's a good point about testing the rest of the family. I'll get the blood work done for the rest of us this week. That's funny about having tacos for dinner 3 times the first week your son was diagnosed. I have visions of feeding my daugher rice for breakfast, lunch and dinner. It's going to be a big adjustment for me, but I know it will get easier and there will still be lots of good (gluten-free) food to eat.

Thanks

[mom2]

It's great they caught it so early! It can be hard to diagnose celiac in little kids. It does make sense to get your older daughter tested, especially since she will probably start eating less gluten now so the testing will be harder in the future.

There's a lot of recipes and meal ideas on the board. You can absolutely learn to cook, and it's fun once you get the knack of it. Some people find cooking shows on TV or YouTube helpful because you can see how food should look at various steps in the recipes. You could also see if there are local cooking classes.

Cara's right about the grocery store seeming overwhelming at first. Try to shop around the outside of the store where the produce, meat, eggs, and dairy sections are are since that's where you find the naturally gluten-free food. Reading the labels on processed food can get pretty overwhelming. I'd recommend getting a rice cooker too. They are super-convenient.

Thanks for the encouragement! I love the idea of taking a cooking class. I bet I might able to find a gluten-free one around here (I'm fortunate to live in a very health conscious city).

[Skylark]

I was wheat-free as a kid. Breakfast was often egg and/or sausage or bacon, and potatoes of some sort. Mom would make home fries or hash browns but my absolute favorite was Tater Tots. I also ate Cream of Rice cereal, sausage grits, or goats milk (I couldn't have cows milk) and rice chex or rice krispies with banana - make sure you get the gluten-free brown rice Rice Krispies.

[StephanieL]

it is a learning curve to be sure but you can do this! If gluten is the only thing you are avoiding you have tons of options! That's the good news! There are a lot of places on the web for great and easy gluten-free cooking ideas for kids.

We have been gluten-free for almost 2 years now and I (personally) think it's one of the easier of out allergens to avoid!

Ask questions and you will get lots of help!

You'll rock this and think of it this way, it'll force you into becoming a better cook

[frieze]

if you truely have a lot of gluten containing product, any that are unopened could be given to your local food pantry.....and you would get a small tax deduction.