cmc811

I'm just wondering if it would be worth having it redone at the 1st lab and see how the value compares. When I asked the GI office the nurse told me it was comparing apples to oranges because labs have different values. Why though? The units of measurement are the same so why is 4 the limit for some and almost 6 for others?

So frustrating!

Does anyone know much about optimal ranges for TSH in a 5 yr old? I know there is a lot of controversy in terms of adult TSH values and I'm finding all kinds of ranges on the internet.

My son had TSH checked at 22 months and it was 2.91. Range for that lab was 0.40-4.00.

TSH done earlier this week at age 5.75 years was 4.7. Range was listed as 0.70-5.97.

Does that seem high? Is it normal to have jumped that much? I though TSH went down as you got older, not up. He has GI symptoms but one of his other symptoms is being tired all the time so I'm just wondering....

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

So finally heard back from the Doctor and no, it wasn't a mistake. He uses EMA and TTG.

Still no word on getting the DGP added, which is irritating since I left the message on Tuesday.....grrr!

Anyway, CRP and Lipase were normal but still waiting on TSH and EMA and possibly DGP if it was added but that is doubtful. I got the CRP and Lipase results through a mychart online access but typically abnormal results aren't posted there until after the doctor has contacted you. Wonder if the TSH isn't done yet or the result is hung up because it was out of range....looks like I need to call and check up on that tomorrow.

I know this test is hands-on and not done by a machine so it does take longer, but how long? I am really anxious for results and trying to decide how long I should wait before nagging the office

Every one of your tests was positive. Get a new GI or like Lisa said make sure your PCP has these results.

Well, try your darndest to keep from getting cc'd! Once the rash presents, it can go bonkers on you real quickly. 

I think overall, we're doing well....my 5 yr old gets his daily gluten via prepackaged crackers, granola bars, etc that I send to school with him. The 3 yr old is a little trickier but we are trying to be very diligent about keeping crumbs and such isolated to his spot at the table and then promptly cleaned up. My hope is we will get their test results back today or tomorrow and we can move forward with eliminating all gluten.

No, there is no point in going to the derm. You have already been dx'd with celiac disease so unless you want to go on Dapsone for dh then don't waste your time with the derm. 

There could be a couple reasons you are turning up with the rash now. 1) You've only been gluten-free for a week --- that's really early in the gluten-free game --- you may have been right on the verge of presenting with the rash anyway & it's sort of like trying to stop a speeding car, it takes a little while after you put on the brakes for it to stop. With dh, the antibodies are deposited under the skin & it takes time for them to go away. 2) You are still getting gluten even if in minute amounts... i.e.: getting cc'd. DH is terribly sensitive to the tiniest amount of gluten. It's imperative that you be pristine in your diet.

 

Oh wait. I went back & re-read your post. I had mis-read & thought you had been gluten-free for only a week but you said you developed the rash about a week after going gluten-free. Ok, so how long have you been gluten-free?

I have only been gluten-free for 3 weeks so you weren't far off.

My rash isn't severe at all so I don't plan on trying to get dapsone so I guess I'll just try and ride it out. I do know I am probably getting a bit of cc right now. My kids haven't been tested yet (in the process) so we're not completely gluten-free in the house yet. We will be soon, but I have to still get a bit of gluten in them everyday for now.

Sorry to stop the flow of your thread CMC....carry on

No worries!

It is frustrating that I can provide link after link to studies and they all say that DGP isn't better than tTg, but the 2 used together seem to yield the most accurate results, yet I can't get the test ordered.

I haven't given up on this GI yet, since I don't have his explanation yet. I left a message for him and didn't hear back today but since I'm new to this office I'm not sure if he works everyday or what his usual response time is. Holding out hope that I'll hear something tomorrow.

Also, I have a dentist appt for my 3 yr old tomorrow to get a better analysis of his enamel. The GI was VERY interested in his enamel issues and wanted more info from the dentist. Ironically this is the same child that vomited violently today with no other symptoms. So odd! We really have low suspicions in him compared to the 5 yr old but his belly has seemed more bloated the last week or so and now random vomiting......I'm beginning to feel like I'm looking for symptoms, but they just keep popping up.

So, anyway, I'll be calling the GI office again tomorrow to relay information from the dentist and to see if I should make an appt for the younger one. Like I said, he wasn't at the appt with us but the doctor seemed very interested in following up with him due to his teeth issues we mentioned. Hopefully with that call I can also find out about the DGP for the 5 yr old. I am just so ready to get to the bottom of all this. I'm actually using 2 weeks of vacation time so I have time to make appts, make follow up calls, etc and to clean the gluten out of my house.

I was recently diagnosed with Celiac (based on low positive ttg and marsh I biopsy) and about a week after cutting out gluten I developed a rash on my elbows. Very itchy and now painful.

I've been generally itchy off and on for a while but this is the first time I've had anything that actually resembled a rash to go along with the itch. Is is likely to be DH? Why would it show after cutting gluten?

Also, since I've already been diagnosed and am gluten-free is there any point to going to the dermatologist?

Is it possible it just got left off the order?  

 

That is strange...hoping it was just a minor error and his staff can fix it.

I guess it's possible but in the whole visit that was the one topic that I felt got the brush off a bit. I'll see what I can find out today but I have some work meetings so I don't know how much time I will have to deal with it. How long after a blood draw can an order be put in and the same blood used? My son does not tolerate blood draws very well and I would hate to have to make him do it again because of a mistake

I have a message in so we'll see if I hear back today.

Wasn't a big deal for me....but during the process of diagnosis in children, not running DGPs is a mistake in my opinion.

 

If the EMA is positive there is celiac damage to the endomysial layer of the small intestine.  

 

The reason the DGP is so important...especially in young kids is it measures possible reaction to gluten - potentially before damage to the small intestine is measurable.  It can also help determine if small quantities of gluten still remain in the diet of folks that have been diagnosed.

I don't know what the deal with the DGP is around here, but no one seems to think it has any value. When I asked about it he didn't really address it specifically. I told him that the pediatrician wouldn't order it because she said no one would know how to interpret the result. He looked puzzled by that and said no, that isn't true, but then he didn't order it either.....grrrr!

He was very explanatory with everything else but he was a little vague when it came to that test and I just wish I knew why. I will try and call today but don't know how far I will get with that...

"The anti-endomysial antibody test (EMAIgA), EMA-IgA, is very specific for celiac disease. It’s estimated that a person with an elevated titer of EMA is almost assured of having celiac disease. However, the EMA test isn’t as sensitive as the tTG-IgA test; about 5-10% of celiacs do not have a positive EMA test."

So, how likely is it for the EMA to be positive if the ttg was negative?

Correct me if I'm wrong but my understanding is that EMA is highly specific, but not super sensitive. Is that correct?

Reason for asking is my son had a negative tTg-IgA (sufficient total IgA) and I asked about the DGP but the doctor ordered EMA. The tTg seems to be more sensitive than EMA so if that came back negative is there really any chance of the EMA being positive.

I really liked this new doctor we saw and he seemed super knowledgeable but I'm confused by his choice of tests.

Met Dr. Essers today and overall, I really liked him. He still didn't order all the tests to complete the panel, which I thought was odd, but he did order EMA-IgA and TSH, Lipase and CRP. Other tests like CBC and CMP had been done recently so he didn't repeat those. I specifically asked about DGP but he didn't think that would tell us anything more. Honestly though that was the only thing I left the office confused about. He spent 45 minutes with us and we talked a lot about different symptoms and what they could mean. If all tests come back negative then he wants to give it another month or two to see if symptoms continue and if so, he'll do a scope regardless of what the test results say because it could reveal a non-celiac reason for the pain/nausea or he could be in the small group of people that don't have antibodies in their blood but still show intestinal damage.

He was also extremely interested in our 3 yr old's dental enamel issues. We didn't have him with us but I asked a few questions about him and when I mentioned the enamel he perked right up. He said to ask the dentist more about his enamel and try to get some info about whether it's mild, moderate, severe, etc. He then said to call him with what the dentist says and most likely he'll want to scope him too, even with a negative ttg.

We still don't know if our 5 year old's issues are Celiac related but at least this Dr seemed to have intentions of figuring it out!

Thanks to you both for responding! This is really good information to have.

 

I have to go back and pull the 2d panel they did after the low IgA result, but I do recall that when I posted about it on this board, a few of the veteran celiac moms here said the testing sounded incomplete. As for other symptoms: last fall, around the time of sister's dx, he was having quite a bit of diarrhea and I was very concerned that we might be missing something.

 

But his system has regulated since then, and the diarrhea totally resolved about 2 months ago. Besides this enamel thing, he really doesn't have any issues of any kind at the moment -- his appetite, digestion, skin, behavior, and growth all seem perfectly normal. So, like your second child, cmc811, he seems low risk. But I did think it was weird that the dentist made such a big deal about the enamel issues but then was so dismissive of my follow-up questions.

Does your daughter see a pediatric GI? Could you take your son's results to him/her and ask their opinion about whether or not the tests that were done completely ruled it out?

I just got the call that my 2nd son's results were negative, but I don't even know what tests were ordered - will get report in mail on Monday, but I'm sure it wasn't the full panel So I will be talking to the pedi GI about whether or not Celiac has been effectively ruled out for either of them. My guess is that his answer will be no.....

This is interesting, thanks for posting.

 

I have a question about your signature. I noticed that you mentioned your 2d child has enamel issues on his baby teeth? Is that significant for celiac or autoimmune issues?

 

After my daughter was dx-ed with celiac, we had a blood panel done on her 2-year-old little brother. He had low Iga, which led to further testing, but that additional testing was negative. Around the same time, the pediatric dentist said his enamel didn't look right, that he had white spots on most of his baby teeth. Apparently that can be bad for future dental health, but the dentist didn't want to speculate on why it was happening. I specifically asked about whether that could be a symptom of celiac, and the dentist waved off my question. Do you know if there is a link between enamel issues and celiac?

Dental enamel issues can definitely be a sign but without other things it certainly isn't diagnostic. My youngest son has a few things going on that others have reported as symptoms but in his case I have very low suspicion that they are due to celiac. It's my older son that I really worry about the diagnosis being missed...

What tests did they order for your 2 year old? Having low IgA in itself is a risk factor. That combined with a sister dx'ed plus dental issues definitely puts him in a higher risk classification that Dr. Essers talked about in the video. Any other symptoms he's having?

Sounds like you have a great doctor that wants to finally get you feeling better! That all sounds pretty normal to me. I had quite a few tests done as well to rule out potential causes and yes, the dizziness is one of my symptoms. I don't know that it's my worst symptom but it is the one that in interfering the most with my work, which is becoming problematic. I've only been diagnosed for 2 weeks so I'm hoping as more time goes by that will start to fade away.

Glad you're be listened to! Sounds like a good doctor so don't be afraid to ask questions. If you don't understand the ultrasound, ask what they're looking for.

I, for one, am having a really hard time getting my sons' pediatrician to run the complete Celiac panel. In desparation for answers I called up a pediatric GI office without a referral, explained the situation and was able to get an appt. Haven't went yet, but I've heard great things about the doctor so I am excited about the possiblity of someone actually listening this time.

Anyway, the dr is Dr. Jonah Essers and he has put together a presentation for General Pediatricians (since so many are clueless about Celiac!) that I stumbled across. I don't know that I agree with 100% of what he says but he talks a lot about placing patients in risk categories (high vs low) and how that first step can change how you interpret results. He talks about how in high risk patients (family history, symptomatic, associated condition, etc) you can't fully rely on negative serology. He talks about a negative tTg being a "suboptimal negative predictive value" while in a low risk patient the negative serology is more likely to accurately rule out Celiac.

He also talks about how this is a lifetime disease so it's VITAL to get the diagnosis right from the beginning and fully evaluate patients.

Anyway, it's interesting and informative. If you have 25 spare minutes you can watch it at Open Original Shared Link

And I'll let you know if I still like him after our appt on Monday

My symptoms I experience are:

 

Frequent infections, colds (every year)

Alopecia universalis (Not even one hair on the body)

Eczemas

Nail problems

Fungal infections

Spots

Frequent nasal bleeds (especially when I was a kid)

Bloating, gas, GERD, fatty stools, diarhea

Enamel problems

Lip sores

Hot flushes

Cold hands and feet

Nasal congestion

Dry skin

Sore eyes

Heat intolerance

Swolen neck lymph nodes

Bleeding gums

Bruising

Blacking out when standing

Dizzines during physical activity

Dandruff

ADD, brain fog, anxiety, severe depression, extreme fatigue, memory problems, panic attacks when I was a kid. etc..

Weight gain and loss

Unable to gain muscle

 

The simple answer is that anything is possible with Celiac! My 5 yr old son is currently being tested and he has the symptoms that I made bold in your list. His alopecia is Alopecia Areata, not Universalis, but regardless it's still autoimmune and he was diagnosed at 20 months old when all his hair fell out. We thought he did have universalis initially but after about a year it all grew back and now he just gets the random round patches of hair loss that are classic for the areata presentation. His CBC is mostly normal except for low red blood cell count. His hemoglobin and hematocrit are in the lowest range of normal. All other labs have been normal. He also has asthma, abdominal pain, nausea, chronic constipation and is gaining weight very slowly. His height growth has remained at a steady rate, but he hasn't been gaining weight so his weight/height and BMI numbers have dropped significantly. Doctor thought there was no way he had Celiac, but I tested positive so I am demanding it be looked into further by a pediatric GI. Everyone's presentation is a bit different so it's great that you had the testing done. Your symptoms are definitely suggestive with or without deficiencies.

Hi CMC and Laura,

Laura did email me and I am very grateful that she did, and I am sorry about any confusion.

Dr. Marsh, the founder of the a Marsh grading system for the small intestinal changes seen in celiac disease, gave a talk at the ICDS, and he is the one who I paraphrased in my blog post.

From what Dr. Marsh said during the lecture, if a patient has symptoms, elevated TTG antibodies, and a Marsh 1 lesion, there are 2 possibilities, either Celiac Disease (likely an early stage) or Crohn's Disease. The other causes of a Marsh 1 lesion, such as IBS or lactose intolerance, do not cause the TTG antibodies to be elevated.

To determine if the symptoms, elevated TTG, and Marsh 1 lesion is from Celiac v. Crohn's, the endomysial antibodies should be checked. If the endomysial antibodies are normal, the patient likely has Crohn's, as they should be elevated in Celiac Disease.

Nothing in medicine is ever black and white, but I believe that he was trying to provide a framework/guidelines for medical decision making for some of these gray areas of celiac diagnosis.

Thank you also for reading my post in the first place, as poor Laura learned from my email I am really at a low point with blogging and updating it right now....

Jess

Thank you so much for the clarification!!!

It doesn't help my particular situation because EMA was never ordered for me but my GI said it was very likely Celiac and was confident enough to call it that. I guess now I just worry that the diagnosis wasn't right. Is seeing how I feel on the diet the next step? My tTg was just mildly elevated (7 with >4 being positive) and with my biopsy only showing Marsh I it makes me less confident about the diagnosis I guess.

Unrelated but I just got my endoscopy report in the mail and I'm a bit disapointed. Only says "multiple biopsies" but doesn't say how many or if any were taken from the bulb. Just says "duodenum". And the pathology report isn't helpful either. It states "The specimen consists of multiple tan-gray tissue fragment(s) measuring up to 0.5cm. The specimen is entirely submitted between sponges in one cassette."

I thought I read somewhere that the tissue taken from each biopsy was supposed to be submitted separately, but of course I can't find that article now so I have no idea the source. Also it just says "increased number of intraepithelial lymphocytes" but there isn't a number. Is that normal?

I have been given the diagnosis and I have no problem with being gluten-free but I just want to be confident about it and unfortunately I'm just as unsure now as before my endoscopy

I had a friend recommend the Premium Gold from Costco. For now my plan is to get that for more savory dishes that I would have used a whole wheat flour for before (breading for chicken nuggets, sauces and such) and buy Better Batter for baking, since I don't care for the whole wheat taste in baked goods. A while back we cut out "white" products mostly and started eating all whole wheat/whole grains and I found I loved White Whole Wheat flour. Tastes like white flour but has the nutrition of whole wheat flour. That was multipurpose for me in savory and baked goods. Does anyone know of a similar gluten-free product?

I've worked so hard to transition to whole grains and so I am on a mission not to fully revert back to processed stuff because I can't have wheat/gluten.

On Friday my GI doctor sent me a message saying my biopsy was equivocal (Marsh I). I sent a whole list of questions about how many biopsies were taken, possibility of damage being missed, next steps to rule out other causes of positive tTg and increased lymphocytes, what is means for screening my kids, etc.I also let her know that at only 1 week gluten free my GI symptoms are MUCH better. I was/am having symptoms beyond GI and those have improved but I imagine they will continue to get better. Right now I know I'm being cross-contaminated despite being careful because I am purposely still feeding my kids gluten until their testing is completed.

I just got an email back from her. Although I didn't get all my questions answered she answered the important one which was "Would you call it Celiac?" Her response:

Even though the biopsies were equivocal, I would say you do have celiac disease since you feel significantly better by avoiding gluten and the slightly positive TTG.
TTG is very specific so it's positive, it means that the patient usually has celiac disease but it is not 100% sensitive so it can miss cases. If you son is symptomatic but has a negative TTG, I would recommend seeing a pediatric gastroenterologist and discuss getting small bowel biopsies.

I will send you a result letter with the final pathology report.
I will have my staff mail you the procedure report.

In response to asking for the pathology, this is what she sent which seems unlikely to be the whole thing:

FINAL DIAGNOSIS:

Duodenum, Endoscopic Biopsies:
Slightly increased numbers of intraepithelial lymphocytes,
significance uncertain, no villous atrophy or crypt hyperplasia.
No parasites or acute inflammation.
No atypical cellular infiltrates or granulomata.

Shouldn't there be more to the pathology report? I will be receiving the procedure report that should better explain how many biopsies and such were taken, but I think that is what I'm getting as far as pathology.

Anyway, this should FINALLY give me some ammunition to get my kids properly tested and for that I'm very thankful

I'm still too new at this to have a ton of input but just wanted to congratulate you on getting through to him and benefiting his future patients. That's awesome!

This entire chapter has been eating away at me, so to speak, with mounting anxiety of my children's health and no "diagnosis" to validate my concerns. Yet, I don't want my daughter to go entirely gluten free until I've figured it out.

I am in this exact situation. I have no problem going gluten free for myself because I think my test results provide enough of a case for it. It's my kids, mainly my symptomatic 5 year old, that severely stresses me out! The pediatrician hasn't thought it was Celiac from the beginning when I brought it up so the testing process has been difficult to get initiated for him. Now with a negative ttg, she has completely written off the possibility of Celiac. I specifically asked for DGP and basically was denied. She wouldn't order it, so I'm no help with that test.

Do you have the ranges for your results? All labs are a little different, so generally when you post a result you should also post the range the lab uses.

I'm sorry you're going through this, but trust me, you're not alone! I think many of us are in, or have gone through, diagnosis hell.