cmc811

 

Pregnancy is one of the common triggers for celiac disease.

 

I didn't recognize it all the time but looking back my first pregnancy is when my symptoms started....that was 6 years ago

I'm in a similar situation except I did get tested and my results are being called inconclusive. Low positive ttg and Marsh I biospy isn't convincing enough apparently......grrr!

Anyway, my 5 year old is also having symptoms which is what really prompted me to get tested because I was getting resistance from the pediatrician when it came to testing him. Based on my positive blood test she ordered a total iga and ttg-iga for him. Both normal and so she has decided that she has ruled it out. Obviously, I don't think the 1 test is effective enough for a rule-out. So what I ended up doing is going around her. I have him scheduled with a pediatric GI in a week and I'm anxiously awaiting hearing his theory on my results and how that may change what testing needs to be on my son.

Moral of the story: find an experienced pedi GI and take her there. Explain everything and ask for a full panel. Make sure you let them know that you want to test while she's consuming gluten and since the house is gluten free you don't want to lose the window of opportunity. If they don't take you seriously call a different doctor. You have a valid point so continue to persue it!

Type 1 lesions, with IEL only, can be seen in IBS and other causes of malabsorption.  If a patient has a Marsh Type 1 lesion in the duodenum and positive TTG antibodies, the diagnosis is either Celiac Disease or Crohn’s Disease.  If anti-endomysial antibodies are present, it is Celiac Disease, and if they are absent, it is Crohn’s Disease.

I stumbled across this statement today on Open Original Shared Link and I wanted some thoughts. Obviously that is a very black and white statement and understanding Celiac never seems to be that clear.

I'm particularly interested in what Marsh 1 with positive ttg means because that is exactly where I'm at. Unfortunately the EMA was never ordered and I have now been gluten free for 9 days. I haven't had a follow up appt with my GI yet, I just was told that my biopsy wasn't the typical findings of celiac. Her advice was that if I feel better off gluten, I should continue to avoid it. It seemed like she was just leaving it at that because she never mentioned following up at all.

So...........if a positive ttg and Marsh 1 doesn't always mean Celiac, then what? Shouldn't she be ruling out other causes? Those 2 findings aren't "normal" and something is causing them. To be honest I know very little about Crohn's disease but it has never been mentioned as a possibility when discussing my symptoms with my PCP or GI.

I just wish it really was as black and white as the quoted statement makes it seem...

 

One of my biggest frustrations is when a patient has positive antibodies, symptoms and measurable indications of early celiac disease in the small intestine that their doctors want to wait for villi atrophy to diagnose -- sorry, but that waiting period doesn't only damage the small intestine -- it can cause numerous symptoms throughout the body and greatly diminish quality of life.

 

Ok, rant done

 

I understand your frustration, but try to focus on the fact that you likely caught it early

EXACTLY! I have no intentions of ever eating gluten again for myself. It's my kids that concern me without a one way or the other diagnosis.

I did not have the gene test but I was going to ask my doctor about it. I do think it could be helpful in making the jump to a full diagnosis. Of course the other side of that is that if the gene test is negative that just muddies the water even more....

The good news is that I did get in touch with a pediatric GI that was recommended to me by another parent with a celiac kid and he is willing to see my son without a referral from the pediatrician. That appt is set for the 24th. Doesn't address the issue with the pediatrician but its a work around for now while I try to find a new pedi.

Okay so my fear is being realized.....biopsy was "equivocal". Exact message from doctor was:

"The biopsies of the small bowel was somewhat equivocal. It showed an increased in some inflammatory cells called lymphocytes but there was no evidence of villous blunting (which is the classic feature for celiac).

I agree with you since you feel better on a gluten free diet, I recommend avoiding gluten. "

So......what next? I have asked for copies of the endoscopy report and pathology report so I will have those soon. The only Celiac blood test I had done was the ttg-iga (result 7 with anything over 4 positive). I read that other conditions can cause a slightly elevated ttg and increased inflammation in the lympocytes without blunting, but how are those conditions ruled out. As far as I'm concerned I will be gluten-free but I really have some decisions to make regarding my kids and a more convincing diagnosis for myself would make those decisions easier.

My hemoglobin is always low, as is my hematocrit and rbc. My MCV is slightly high, but B12 and folate are fine. I did notice my b12 is lower with each check though and is now pretty close to the low cutoff. I wonder if I'm becoming b12 deficient?

Also, in regards to periods, that is certainly not my problem. I have PCOS and go months between periods if I'm not on bc pills to regulate my cycles. Many of my "anemia" investigations took place during a time when I hadn't started the pill and hadn't had a period in 2-3 months.

Thanks for all your info! It's so frustrating because I have many lab values just slightly out of range, but since they don't seem to be getting worse the doctors just shrug and move on. Unfortunately I don't feel well and no one can figure out why And with labs that are close to normal no one seems to think the abnormal values have anything to do with my symptoms.

I got the "unspecified anemia" diagnosis. My PCP referred me to the hematologist to have it further explored but he never figured it out either. He wanted me to keep coming back every 3 months but after the 3rd visit of him saying the exact same things and not reaching any further conclusions I quit going.

So, yes I have officially been diagnosed with anemia but I take that with a grain of salt since it can't be pinpointed. Maybe my numbers just naturally run a little outside the ranges, but that is normal for me?

Interesting about magnesium.....I can't find in any of my lab reports where magnesium was even checked.

an elevated transferrin may indicate an iron def. anemia....

That's what I thought but hematologist said my anemia wasn't iron def.

High Transferrin

Very low end of normal ferritin

low hemoglobin

low hematocrit

low red blood cell count

Iron binding capacity 2  points from being high

It was my understanding that was all typical for iron def but maybe because my actual iron serum was normal, that is what he was going off of?

Just wanted to add that one of the benefits to getting the endoscopy is that they test for other issues too - not just Celiac.  It's good to know you're not dealing with something else on top of gluten issues.  Also, there's nothing keeping you from just telling people that you/your child has Celiac.  They don't need to know that the doctor couldn't/wouldn't confirm it - it's really none of their business.

I did have the endoscopy, which looked normal, but haven't received pathology results yet.

I can't even get the pedi to order the dgp for my son so asking her for a referral to get a scope done will never happen! I think I'm going to make him an appt with my doctor (general practioner) and see what her opinion is. SHe's more open to running tests the patient asks for. I asked for complete thyroid studies including antibodies for myself and she didn't think it was necessary but did it anyway since it made me feel better.

Our family GP/PCP ordered a complete celiac blood panel (took copies of material from the University of Chicago website in hand).  She'll get tested in three years -- sooner if she has any symptoms (mine was just anemia).  Our doctor never hesitated!  I find that submitting things in writing seems to get everyone's attention!  

Unfortunately, I did submit to her lots of reputable websites and studies saying that the ttg and dgp together provides the best accuracy rather than just ttg alone, but it didn't do any good

I definite will remain gluten-free. The reason I want to pursue a diagnosis is for the benefit of my kids. I've posted a bit about my struggles but I suspect my 5 year old has celiac but his ttg was negative (total iga normal) and his PCP doesn't think further testing is necessary. I asked for DGP by name with several links supporting the use of it with the ttg for better diagnostic coverage and she flat out denied the request.

My fear is others won't take precautions to keep him safe without the diagnosis. I can keep him gluten free at home but school, daycare, grandma's, etc could be tough.

Then there is my 3 yr old who is asymptomatic as far as I can tell. What if he has "silent" celiac and is never tested because there is no confirmed family history? If I can be officially diagnosed it puts a little more in my arsenal to persuade doctors to test and diagnose them if necessary.

Thanks for your input.

Just to clarify, I do have all my results I just didn't have them in front of me while I was typing. I actually can view all my tests results with ranges online and can reference them at anytime, which is super handy! Also other doctors have easy access to them as well.

My total iga was in the middle of the normal range so I am not deficient.

I will definitely ask how many samples were taken, but what if she says "only 2".....then what? Do I have to urge her to repeat the procedure and follow current recommendations? I don't imagine that conversation would go well so maybe I would be better off going to a different GI.

Not to hijack original poster's thread, but what should ferritin be? Mine was labeled as "normal" at 17.8 with a standard range of 12.0-306.0

Should it be closer to mid-range/upper range? Where does transferrin fit in? Mine was actually above the normal range. I've tried googling and just confused myself more and unfortunately my hematologist wasn't much help.

Quick history:

*List of symptoms that can't be explained

*ttg iga value of 7 (anything over 4 positive, but 4-10 considered weak positive)

*Total iga normal (don't have exact values in front of me at the moment but they were in middle of range)

*ANA 1:40 speckled but all confirmation tests for different antibodies negative so Lupus and other disorders ruled out

*TSH 2.17

*Free T4: 0.8 (0.5 minimum of normal)

*Free T3: normal (again don't have lab report in front of me at the moment but it was in the top 1/3 of range)

*2 thyroid antibodies checked and both well within normal range

*Have been gluten-free post biopsy which was 1 week ago and feel much better but I do have a cold at the moment so energy, fatigue, brain fog can't be accurately assessed at the moment.

I have had the endoscopy/biopsies but don't have the results yet. I'm compiling my list of questions for each result. If it's positive then I really don't have many questions, but if it's negative I'm perplexed. What should I ask for? Since my ttg was so close to the negative range I'm afraid it will get the brush off and they'll tell me it was a false positive and I don't have Celiac. Should I ask for the gene test in that case? Run the ttg again, dgp, ema? Pre-biopsy neither my PCP or GI felt additional blood tests were necessary since ttg was positive so that is all that was done. The one issue with additional bloods is my current gluten-free status but since I haven't been off it long I could start eating it again for a week or so and then have the blood draw.

Thoughts? I just want to be prepared when the phone call comes which I'm expecting tomorrow.

Also: what about my thyroid tests? I know the optimal range for TSH is closer to 1.0 and my free T4 certainly isn't in the optimal range since it is at the bottom instead of the top of the range, but since antibodies were negative the doctor is saying all is normal. She told me pre-test that even if the antibodies had been positive they wouldn't treat for hypo because my tsh is technically in the normal range. I had to persuade her to even order the thyroid antibody tests.

Also you could ask for a gene test. Some docs will make diagnosis without positive biopsy with a ttg that high if the gene test is positive and your symptoms are resolved by a gluten-free lifestyle.

Maybe keep with the diet and have repeat labs in 6 months to see if you're absorbing more nutrients as you heal?

When was your endoscopy? My dr told me my endoscopy looked normal, but we were waiting for pathology to look at the biopsies. Could the receptionist have reported the "normal" result without having the pathology report? technically, she shouldn't have given ANY results since she's not qualified to do so, but that's a whole other topic.....

Regardless, if you ttg was that high and you feel better gluten-free I think that's your answer

Thanks so much!

I actually just found the Swedish GI page too and it looks like I can make an appt there without a referral. I'll wait for my biopsy results and then we'll likely end up there.

Thanks for all your encouragement. It's such a frustrating process but feeling icky everyday is frustrating too!

*Added: I just remembered one more finding that probably is relevant. His RBC is low. His is 3.77 and the reference range is 4.50-5.10 and his MCV is high (90.9 with normal being 73.6-90.0). I was told these were insignificant findings because his HGB and HCT were normal. Everything I have read suggest iron-deficiency anemia, which of course, is a symptom of celiac.

Her answer was not only frustrating but is leaving me very discouraged about finding a different doctor that might listen. To my knowledge the GI dept at Seattle Children's is where he would be referred to by any PCP in this area. If they aren't more knowledgable than what hope does that give me?

Celiac might not be the problem but I'm not willing to say it's been ruled out based on the ttg-iga alone. Too much evidence supports it can be falsely negative in kids. I don't know what the issue is but my instinct has been telling me for far too long that something is up with him. He's only gained 2 lbs in 1.5 years (total weight 38 lbs at 5.5 yr old), often complains of pain around navel, frequent waves of nausea with no vomiting, fatigue and constipation. all that coupled with the fact that I likely have celiac and he for sure has alopecia areata makes me more than a little suspicious!

Contacting a local Celiac support group might produce a good recommendation.

 

Great email....hope your current Ped comes around

Well, time for plan b.........here is the doctor's response to my email:

"I discussed today with the GI doctors at Seattle Children's. The current evidence-based recommendation is to screen with TTG (Jacob's was negative) and do no further testing if TTG normal. The new test mom mentioned, DGP, is recommended for a subset of patients who need it. It is not a screening test and nobody would know how to interpret the results for Jacob, even if we did it. It is not so simple as a blood draw. The results might be unclear and that does add risk of unnecessary tests and procedures. So when in doubt, we go with what the overall medical evidence (not just one study) shows.

In the future, schools and daycares will honor any doctor's note about what Jacob can and cannot eat, and it has nothing to do with an official diagnosis that has been made. We do this for kids all the time and have few problems with it.

My apologies for another long-winded reply. I would recommend a face to face visit if you/mother wants to discuss further."

So, I guess I'll give it a rest through the weekend and hopefully get my biopsy result back next week. After that I'll ask my GI what she recommends for the kids. She doesn't see pediatric patients but I discussed his symptoms with her previously so I'll see what she can do based on family history if my biopsy is positive. The frustration continues......

The other tactic I have up my sleeve is seeing what the dentist has to say. Our youngest son has no digestive symptoms but he has been diagnosed with dental hypoplasia. His two front teeth have significant spots on them and were that way when they came in. I'll see what he knows about Celiac and the connection. Maybe his expertise can get us somewhere. I'm willing to try just about anything at this point!

So I think I'm in need of a new pediatrician, which is very unfortunate because I have really liked her in every situation but this one....

Got the phone call today from her nurse that she didn't order the tests because she doesn't see the value...grrrr! Hubby actually talked to her and explained our concerns about going gluten-free without full testing because testing will then be invalid. She seemed to get his point and said she would pass the message to the doctor. We didn't hear back so this is what I just sent her in an email:

"Cody talked to Lisa today and expressed concerns about not doing further Celiac testing, but I wanted to contact you. He is still having symptoms and we have made a decision that we will be trying a gluten-free diet to see if mine and his symptoms are resolved. It may be that we have non-celiac gluten sensitivity, which can't be tested for so ruling out Celiac definitely is important to us. Going forward, having Celiac diagnosed offers protection under the disabilities act and will require future daycare providers, teachers, school officials to make sure he stays 100% gluten free in their care.

I have done extensive research and from everything I have read I believe doing the DGP or deaminated gliadin peptide antibody (both IgA and IgG) would be worthwhile. This article is from Canada (Open Original Shared Link), but it shows how 20 patients diagnosed with Celiac through biopsy were negative on the tTG-IgA test and only 1 was IgA deficient. I know that is a small sample size but what if Jacob fits in that group? A passage from the conclusion: "Based on our results AGA II (deamidated gliadin antibody) seems to be equivalent to, but not better than TTG-IgA; however, it may have additive benefits in celiac screening as the combination of the two tests can increase the sensitivity without really lowering the specificity."

I feel there is much more risk in not running the test and missing the diagnosis vs the risk of doing the blood draw."

If she stands firm and refuses to order testing I might come unglued......

Other than personal referrals, any tips on finding a pediatrician that knows more than the basics about Celiac? I'm at a loss for how to get these tests ran and it's making me super frustrated.

After the longest wait, we have the results of the biopsy for DS1 and it is positive and confirmed the Celiac diagnosis. We got a note from the doctor for the school which hopefully is going to help us keep him a bit safer from gluten at school.

It's been almost 4 weeks since the biopsy and he has been already feeling much better( started the gluten-free diet right after biopsy). No more tummy aches or headaches and his teacher sent me a note yesterday about his increased focus and responsiveness in class. I am hoping this lasts and we can keep him from being glutened as much as possible.

Is it Okay to be happy for finally getting a diagnosis? This just feel like a relief somehow. It is a very strange feeling.

Having an official diagnosis is something I would be thrilled about! No one ever wants to hear something wrong with their child but you can't help them if you don't know. Making them better is the ultimate goal so celebrate all you want

If you don't mind me asking, how old is he and what bloodwork results did he have before biopsy?

Thank you! I just sent an email to her requesting the ttg igg, dgp iga and dgp igg. I also explained that we will be gluten free by the end of next week, regardless of my biopsy results, and I really want the full testing done before we lose the opportunity. We'll see what she says. I have a feeling it will be "make an appt to discuss" which is going to infuriate me. Why don't we do the tests and then make an appt to discuss results???

I get nervous in those situations and have a hard time demanding tests when I'm told it's not necessary. I do much better with email where I can include links to my sources and such. I really need to get over that, but I've never done well with confrontation.

Thank you so much for your insight. I'm sorry you've had the same experience though

As far as his rash, it really doesn't appear to be DH and the dermatologist seemed very informed about celiac and encouraged me to pursue it more with him, but she didn't have any concerns about his rash being DH. It has a very classic molluscum appearance and I actually agree that the diagnosis is correct.

I'm hoping the pediatrician will order the tests you mentioned but in the event she won't, does anyone know a way to get them done without a dr order?

Cara - how did you get them to run the IGG tests with a normal IGA? Our pediatrician, whom I normally love, thinks that Celiac is highly unlikely for my very symptomatic son because his IGA was normal and his TTG-IGA was less than 1 (under 4 normal).

No known family history until I got tested....my ttg was 7 and my biopsy is next week. I'm at such a loss for what to do with my son!

Hello,

I'll try to keep this as short as possible.....I need to know what you all suggest as far as testing for my kids. Here's the background:

*I have presumed Celiac disease. tTg mildly elevated, ANA mildly positive, C4 mildly low (notice a trend???) and I have definite symptoms. Thyroid antibodies negative as well as all the confirmation tests done after a positive ANA. Biopsy is scheduled for 3/5, but regardless of the results I will be going gluten-free because I know I have an inflammation problem and that's all I know to try at this point.

For my kids.....both boys, aged 5.5 and barely 3.

*5 yr old; symptomatic, but pediatrician doesn't think Celiac is the cause. Ordered tTg-IgA at my insistence which was completely negative at <1. Total IgA was 120 with reference range of 24-300, so normal. I asked for DGP and she didn't feel was necessary. She is viewing each of his symptoms individually but yet they're not getting better. The behavior symptoms have been better since removing food dyes but not totally resolved. Besides the behavior issues he has chronic constipation despite a careful diet (high fiber, all whole grain, lots of water, fresh/raw fruits and veggies, etc), respiratory issues, skin issues and seemingly reduced immunity since he has molluscum for the 2nd time which the dermatologist said was extrememly rare. She encouraged a gluten free diet for him because she thought it could be contributing regardless of his test results....

*3 yr old; some of the same skin issues as brother, but virtually asymptomatic at this point from my perspective.

So, once I go gluten-free we will have a 100% gluten free house, which means any testing for them needs to be done NOW while they're eating gluten. I'm not as worried about the 3 yr old, although I do want testing for him if my biopsy is indeed positive, but its really the 5 yr old that concerns me. I know I could just say screw the medical community and take him gluten free but I'm afraid I will regret that later. If he indeed is Celiac I would like a formal diagnosis to help get him the accomodations he needs at school and such.

So...........what would you do? Normally I would just call a GI and make him an appt but they are require referrals it seems. What particularly should I ask the pediatrician for? DGP? something else? And would the recommendation be the same for the asymptomatic child?

I'm so frustrated and I sincerely appreciate your advice!