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cmc811

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About cmc811

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  1. So DGP result in and negative.

     

    DGP-IgA - Result 8 - Negative is <20

    DGP-IgG - Result 4 - Negative is <20

     

    Earlier in the year he had a negative tTg-IgA and EMA, so at this time it seems unlikely we're dealing with Celiac Disease.

     

    He did have an elevated ESR and he is severely constipated.....not sure what to do next. Doctors just seem to want him on Miralax forever instead of figuring out the root cause....grrrr!

     

    May try eliminating gluten anyway to see if we see improvement. That and dairy. Any other suggestions?


  2. I was wondering about anemia too...his hemocrit and hemoglobin are normal but his red blood cell count is low. Basically I've been told that isn't significant, but my blood work looked like that too and over time my other number fells into the anemia range. Was diagnosed with Celiac, went gluten free and for the first time my numbers are all normal after being gluten-free for 6 months.

     

    Even prediagnosis though my ESR was normal. The pediatrician said that some kind of IBS could definitely be causing it but since its a nonspecific test only time will tell. If the DGP comes back negative she said her next suggestion would be an elimination diet starting with dairy. Thoughts on that?


  3. My 6 yr old is still a mystery, but today we found out that his ESR came back high. Normal range is <10 and his was 38. Dr said they typically don't get too excited about it unless it's over 60 but it could be a piece to the puzzle.

     

    So far his Celiac tests have revealed nothing but we're waiting on the DGP still.

     

    tTg-IgA = <1 (range is <4)

    EMA = normal

    Serum IgA = normal

    tTg-IgG = not done because total IgA was normal

     

    I had to go to 3 different doctors to even get the DGP ordered but I really wanted an IgG test ran just in case. Anxiously awaiting those results, but curious if the ESR means anything.


  4. Thanks!

     

    Follow up question: if this test is negative, along with the tTg-IgA and EMA he has already had done (IgA was sufficient) would you do the biopsy anyway? GI said that would be the next step but I just don't know if it is worth doing. I know if I just trial a gluten-free diet and he's better I'll never really have a diagnosis for him but at the same time even if we do the biopsy we could end up in the same spot if it's negative. Either way I plan on trialing a gluten-free diet unless the dr has some miracle discovery between now and his next appt to explain his symptoms.


  5. He eats breakfast at daycare and almost everyday it is something with gluten in it (pancakes, toast, cereal, etc). I also send prepackaged gluten containing items like crackers a few times a week in his lunch. On the weekends he may not have any gluten at all though if we are home all weekend.

     

    I say small amounts mostly to be conservative because I don't watch him eat these things since it's away from home. I don't know how much of the pack of goldfish he eats before he throws it away. I do know he eats a ton of breakfast at daycare though. They've commented several times about how much he eats compared to the other kids.


  6. Just want to clarify that he has NOT been gluten free at any point. I've seen the everyday consumption for 8 weeks recommendation but that was for someone who was completely gluten-free. Since my son has had gluten on an almost daily basis, just in small amounts, would we need to wait that long? I've been making sure he a good serving of gluten every day  this week. If I continue for 1 more week and get the lab drawn next Friday, would that be good? Ideally I would like the result by Monday, 12/29 for an appt we have. If it's negative though, I don't want to be second guessing whether the result is accurate or not...


  7. We're going through the same thing with our 6 yr old. Constant stomach pain but negative tests so far. He didn't have the DGP ordered initially so we are doing that in the next few days. What tests were included in the panel? Even if your little one isn't IGA deficient it is wise to get the IgG tests as well because some people only show positive on those.


  8. I have FINALLY found a doctor that was willing to order this test for my 6 yr old son after the TTG-IgA and EMA were negative. I have Celiac and he has symptoms so this is a test I've been trying to get ordered for over a year....

     

    Anyway, since my diagnosis in March we are a gluten free household. My 6 yr old does get a bit of gluten everyday outside of the house (daycare, school, etc) but will that be enough for an accurate DGP test? I guess my concern is that it's such a small amount each day. After the work I've put in just to get this test ordered I want an accurate result!


  9. Can you find out if the hospital has a Child Life department?  They'll send someone to hang with him and talk about the procedure, play games, etc.  Totally kid friendly.  My oldest was nervous for her biopsy, but rocked the IV without a tear b/c they explained the process to her and she watched the whole thing.  My youngest was given a mask to decorate and smell (Child Life had him use chapstick to make it smell like grapes) so he could be gassed before the IV.

    Yes, they do have a Child Life department. I called today to get more details and they said we could even come in the day before so he could see everything in advance.


  10. With all the - blood work, why would you go to an invasive procedure over a skin biopsy?  I would think that would be less traumatic over the endoscopy, no?

     

    I know the child life people are great. They can help give you ideas how to proceed with informing him what's going to happen.

    I had an appt with a dermatologist for today but his rash is almost gone now, so I canceled it.


  11. If you can find a good dermatologist with experience with celiac, I think they can biopsy the DH rash and give you a diagnosis based on that.  (Not sure about that as this is not a symptom we experience.)

     

    Bottom line, it is very likely your son has an issue with gluten based on his symptoms and family history.  Even if it is another autoimmune issue, the gluten-free diet may help him feel better.  I would want to give it a try as soon as possible, which means you need to do all the tests as soon as possible.

     

    Have you considered doing some testing on your own (EnteroLabs) if your doctor will not agree to more tests?  

     

    Is his doctor a regular pediatrician or a GI specialist?  Our regular pediatrician ordered the initial blood tests (TTG IgA, TTG IgG, Total IgA, Gliadin IgG, Gliadin IgA) but when we went to the GI, he was able to order the more specific tests (DGP IgG, GP IgA, IgA ELISA, EMA IgA)  It didn't really help us much since he was still only positive on the IgG tests and negative on all IgA tests, but maybe another doctor would give you more options. Can you ask your pediatrician to refer you to a GI?

     

    Nevermind, I just re-read your post and see that you are already seeing a GI . . . . maybe try the opposite . . . can your regular pediatrician order more blood tests?

     

    The pediatrician wasn't helpful at all. I had to demand the tTg IgA be done but she wouldn't order anything further since that was negative.

     

    I think we're going to do the endoscopy. My only hesitation is that our son is extremely afraid of anything medical. Getting his blood drawn for the tests we've had done so far was a nightmare. I can't even imagine how he'll react when they try to start an iv. He wouldn't come near me when I had an IV in for my procedure.


  12. I am absolutely no expert, but I am a mom of a 6 year old with possible DH. I would probably do the endoscopy, mostly because I want answers.

     

    I just posted a photo of my son's rash on the DH page. Does your son's rash look anything like that? 

    The small patch he has on his hips (that is itchy) look just like what you posted, but the rash that he has on his bum (isn't itchy) doesn't look like that at all. I'm pretty sure my son has a few different rashes at the same time. He has had skin issues his whole life but never severe enough to try and treat.


  13. Seems odd that your doctor is willing to do an endoscopy but not more blood tests.  My son was diagnosed at age 6.  He was negative on all the celiac tests except the TTG IgG and DGP IgG.  It was very confusing as his only symptom was behavior.  Similar to what you describe.  Complete meltdowns over seemingly insignificant things.  He was also very lethargic (laid around a lot, low energy) but I didn't really notice that until he got better and his energy returned.

     

    I would try to have another (complete) celiac panel run to see if anything else comes up but the blood tests are not that reliable in kids.  If given the choice of endo now or wait it out . . . I'd do the endoscopy.  As nervous as I was, it turned out to be no big deal for Joe.  He actually had a pleasant time at Children's Hospital and returned home good as new.  Damage was found, so for us, we had an answer.

     

    Be aware that a negative biopsy doesn't actually mean he does not have celiac.  I would put him on a gluten free diet after the biopsy (regardless of results) and see if you don't see improvement in three months.  Keep a record of symptoms . . . sometimes it is hard to see gradual changes.

     

    Our changes were almost immediate.  Within days we had our happy kid back after almost 6 months of behavior so bad the whole family had to plan around the whims of one kid.

     

    Best of luck to you.

    Thanks for your input. I completely forgot that Joe was only positive on the IGG, which they didn't run on our son. I was leaning towards doing the endoscopy, but I just want to make sure I'm not putting him through something unnecessary just because I'm so desparate for answers.


  14. I've had a lot of posts so I'll try to summarize where we're currently at with our 5 yr old son.....

     

    Symptoms:

    *frequent belly ache

    *waves of nausea

    *constipation if not using Miralax

    *small - only 39 lbs and 44 inches. Weight is around 15th percentile, height at 45th.

    *Alopecia Areata

    *Behavior issues - crazy off the wall tantrums triggered by insignificant things

    *Always tired

    *Ezcema/dry skin - currently has rash on bottom but doesn't seem to be itchy so DH not likely. UPDATE: just looked at that rash again and he says it's not itchy but he showed me some spots on his hips that are very itchy and look like some DH pics I've seen.

    *Always cold

    *Very mild asthma

     

    Family History:

    *Dad has ezcema, allergies and had asthma as a child. All symptoms are minor now as an adult

    *Mom (me!) has just been diagnosed with Celiac.

    *Grandpa has hypothyroidism (not sure if Hashi's because antibodies were never tested).

    *Same Grandpa (my dad) has many symptoms of Celiac but hasn't gotten tested.

     

    Testing:

    *Total IgA 120 (24-300)

    *tTg <1 with positive being >4

    *EMA negative

    *TSH 4.70 (0.70-5.97) of note TSH was 2.91 at age 2 and range for that lab was 0.40-4.00

    *CRP 0.1 (0.0-0.5)

    *Lipase 89 (73-393)

    *CMP - all normal. Can post if of particular interest but didn't see anything noteworthy.

    *CBC:

    RBC 3.77 (4.50-5.10)

    Hgb 11.4 (10.8-14.0)

    Hct 34.3 (31.0-40.0)

    MCV 90.9 (73.6-90.0)

    *Vitamin D (done 03/2010) 45.7 (30.0-100.0)

    *Ferritin (done 03/2010) 25.3 (12.0-113.0)

    ---------------------------------------------------------------------------------------------------

     

    So..............GI doctor has said he is willing to do endoscopy/biopsy since his symptoms have been going on for months with no identified cause, but he initially advised waiting a few months. Would you do it or explore the high TSH (that the doctors aren't calling high!) first? Is there something else I should be looking at? Doc won't do DGP so as far as Celiac blood tests this is what we're going to get. Is the biopsy likely to show anything? I hate to put a 5 yr old through the procedure for no reason, but the "Mommy my tummy hurts" and "I feel like I'm going to puke" have become a daily thing. Would going to the dermatologist be a good step? I'm afraid the DH-like spots he has will be overshadowed by the ezcema he has and we'll end up leaving with a steroid cream and no answers.

     

    You have been so helpful so far so I just wanted an unemotional/unattached opinion before deciding whether or not to do the endoscopy.


  15. I definitely need to get more assertive.

     

    So, I would like to minimize any more blood draws so what should I ask for?

     

    *Free T4

    *Free T3

    *Thyroid Antibodies

     

    What else? He has had CBC, CMP, TSH, tTg, EMA, CRP all recently. Would there be value in checking for other deficiencies (vit d, vit b12, magnesium, etc)? Also, should I have the TSH done again to compare to his first one at 22 months since this will be the same lab?


  16. Can one of you be my son's doctor??? :)

     

    Seriously, though, I just don't know how to get these doctors to listen. He doesn't fit the "classic" presentation of any one thing but like I have tried to point out, it might just be because he has more than one thing going on! I'm hoping the GI will do the scope now instead of waiting a few months like he originally said. I have plead my case to do it now and am just waiting on his response. I'm not even sure if the scope will show anything, but I'm tired of playing the "watchful waiting" game while my son is repeatedly having rough days.

     

    I will request a full thyroid panel, including antibodies when his PCP is back in the office on Wednesday, but I don't have a whole lot of faith that she'll actually see the need and order it :(


  17. They didn't test anything but TSH and since that was "normal" they don't want to order anything else to complete the thyroid panel, yet they don't have an explanation for his symptoms. I'm so frustrated because I know his symptoms are very general and could be due to a variety of different things, but that doesn't make them any less real for my son to deal with.

     

    As far as insurance I don't need a referral but most speciality clinics require one to even schedule the appointment. I have messages out to PCP and GI questioning what the lab range is so high when everything I have read suggests 3-4 as the upper limit. We'll see what they're responses are.


  18. The ranges on the lab paperwork should be the same or close to the same from each lab, no matter if it was taken at a hospital or a free standing lab, but they are just a reference point.  I do not express myself well in typed communications, I am better at verbalizing, so bear with me some here.  

    What I was really trying to get at is that a Pediatric Thyroid specialist will be the most knowlegeable about how to treat this.  Although you are seeing a Pediatric Specialist currently, if Thyroid issues are not his thing, he/she only has those ranges to rely on.   Speaking from my own personal experience with my son (who also was only 5 when we found his condition) and myself as well as several other family memebers with this condition, the reading I did and the website I was referencing from the my original dr at the Mayo Clinic, Endocronologist usually agree that that a person's number should be less than 3.   My son's is usually in the 2.5 area, and his dr is very happy with that and he feels good at that number, I on the other hand feel best when my number is 1.0 range....  I know your son is young and may not recognize where he feels best, but he will soon and a good dr will listen to you and base everything on symptoms as well.  

    Here were my son's symptoms (his TSH tested at 11, sent to a different lab and they were 13) Ezcema, mood swings, always cold, always tired (probably part of his mood swings too) ate very little yet was gaining 10 pounds in a weeks time, emotional, depressed.  

     

    Hope that helps, I am also looking for the link I used to the Mayo Clinic website, it was created by the endocronology team there, so it was a coloboration of their experiences and opinions.   I haven't looked at it in years, so as soon as I find it I will repost that as well. 

     

    How you explained it is how I understood it but everyone is saying his numbers are fine so I don't know that I can get a pediatric endo to see him :( He has all the symptoms you listed EXCEPT he isn't gaining weight at all. At almost 6 his is only 39 lbs.


  19. We took our son to a pediatric GI doctor for celiac-like symptoms but all this tests were negative. We asked about the gene test but he said that based on the fact that I have celiac and my husband's heritage, he would guess that both our kids have the gene. He said that certainly doesn't mean they will have Celiac but he thought the genetic test would be a waste of money because he was sure it would come back positive and not really tell us anything. Lots of people have the gene but it's never activated.