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

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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.

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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.

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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

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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?

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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

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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

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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

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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.

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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

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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).

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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.

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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 ;)

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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.

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    • She (your PCP)  can order a celiac blood panel.  It might not be a complete panel, but it's a start.  Any medical doctor can order one.  A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder)  or colonoscopy (IBS).   Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel.  You could go to the lab before or after work.  Pretty easy!  
    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
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