MoMof2Boyz

No, we haven't done the skin test. I"ll be cutting those things out of his diet. he is a huge milk drinker, pb and j sandwich eater. I know I can replace the peanut butter with almond butter and he might not notice the difference(I won't tell him it's not pb at first otherwise he won't eat it.) finding a replacement for milk is going to be hard. I like rice milk but I don't think he'd like that or almond milk, we won't do soy since it messes with the thyroid....I wonder if goat milk would be a good replacement?? having him go wheat free will be hard though.

do you all think I should cut out everything at once or one at a time??

Just wondering! I've fallen off the wagon and have been eating a small amount of foods with gluten everyday(I know I know) and figured since I"m doing that I may as well get tested but won't if it's possible I could get dropped from my insurance...any experiences??

also, I am confused. why would a kid test negative for celiac but test positive for a wheat allergy?

Hi. My son's GI doc said the food allergy test results didn't indicate an allergy...he also had high eosonphills(boy I bet I spelled that wrong) and from doing research, that indicates an allergy whether it be food or environment. I was also told that labs will mark results as high or low even if slightly out of range.

so thought I"d run it by here, please give me your honest opinion! thanks!!

Milk(cow) low level .67

wheat .98 moderate level

peanut .51 low level

range for everything is <.35

low level is .35-.70

moderate level is .71-3.50

test was done by Prometheus.

very interesting! My son's genetic test came back extremely low risk. His blood test was negative however, he has a low total serum IgA BUT the DGP IgG was tested(along with others) and is negative.

Sorry, I thought you were asking theoretically or maybe about someone else's test. Your son's test is not positive at all. It is negative, and low-negative at that. 0.7 is considerably below the 4.9 cutoff.

thanks, sometimes this stuff can be hard to understand

Yes, that would indicate celiac. DGP-IgG is very specific.

Really?!! In your opinion, is a DGP IgG of 0.7 range <4.9 a positive? just trying to understand this all better.

thanks!

Hi everyone! Just one more question, if my son's DGP IgG is positive(but not a very high positive) would that indicate celiac?

ok, thank you both, I will ask for those versions of the test.

can someone tell what the difference between these are? (the IgG compared with the IgA thanks!)

for my almost 14 year old son.

(DGP IgG) 0.7 range <4.9

(DGP IgA)<.1 range <6.1

(TTG IgA) <.1 range <10.3

(EMA IgA) negative

total serum IgA 17 so from some emails last year(I had saved them) Dr. Guandalini says that an IgA of 20 or above is not considered IgA deficient...so going by 17 this would be considered defecient?? ages 3-13 range is 41-395 and ages 13 to adult range is 44-441

looks like he had some gene testing done

DQ2- DQ8- increased risk <0.1x relative risk extremely low

food allergy panel came back

milk(flagged high)

peanuts(flagged high)

wheat(flagged high)

all the other stuff he was right at the range given so like for egg white his results were <.35 and the range is <.35

so any comments any advice?? our next appointment isn't for a few weeks and the nurse told me not to read too much into this. the food allergy results make total sense, drinks lots of milk, eats pband j for lunch on wheat bread everyday....

oh and just in case, my ds ismoody/figure itmight be hormones though, very thin think stick thin, no body fat(doc even notes 0% body fat on his medical chart) constipation, redness under his eyes, low iron. thanks again for any help

thank you! it all sounds good! if you think of anything else, please post it!

Ok, so I am getting bored with fruits, yogurts, cottage cheese....having a hard time thinking of something for a healthy snack, I"m trying to get away from sugary processed foods. Does anyone have any ideas? Does anyone here combine carbs with a protein? any ideas for doing that? I need to lose my muffin stomach.

That would likely depend one what lab is doing the work. Do you know? Your doc's office should be able to tell you that if they can't tell you the components of each test. Be watchful of them, some of them do what is called a "cascade", meaning they test one pertinent component...if it is negative, they don't bother doing the tests that follow.

You can go to the websites (like Quest or Labcorp) and see how they define their tests. Every lab has their own way of doing things.

thank you. is there an option to reply without quoting posts? I clicked on a plus at the top hope that didn't screw anything up. I will ask the lab tech about what is being tested when we go next week. He did have a celiac panel done( didn't get a copy of results yet) but he has a low total serum IgA...took ds to a GI and he's the one that ordered the celiac plus panel plus a food allergy panel.

Can someone explain the difference between the celiac panel and the celiac plus panel?

thanks!

I started taking digestive enzymes with heavier meals. I've noticed a few times that for a few hours after taking them my stomach is just gurgling and rumbling so loudly. I feel gassy but don't pass very much. It's a different feeling than when I'm glutened which feels more bloated in my upper abdomen. This is all in my stomach and intestines. Anyone find this a side effect of digestive enzymes?

yes!..I found that I don't need them. no more stomach gurgling...are you sure you need a digestive enzyme?

They tested my Thyroid the first time around said everything "checked out" but I don't think they tested for Thyroid antibodies... My body temperature tends to be low, not sure if that is tied to the BS stuff.

oops, I don't mean to keep quoting when I post a reply, but its' been awhile since I"ve been to this site and I don't remember how to post a reply without quoting the last post. Anyway, you can have low body temps with thyroid problems and also adrenals too. If you haven't already, I"d get a saliva cortisol test. Also, you need your thyroid test results and check the numbers...your thyroid levels could be low, but still in range and that might be why doc says it's fine.

If youor son has not already had them, I would expect the GI to order the IgG versions of the blood tests. As the pp says, he may also schedule an endoscopy, depending on the age of your son. When you get the blood test results back you willl know more.

thanks, I asked for the test results but all that was sent to me was the iron results. I'm going to call and get them though. Is there a particular age for endoscopy? he's almost 14...I will definitely mention testing vitamin levels if it isn't brought up.

Hi, my ds tested negative for celiac but has a low total serum IgA which I know means can make the test falsely negative. We are getting an appointment with a GI but would like to know what we can expect at the appointment.

thanks!

does anyone have any pics? i need to see what these look like I tried google and I didn't find any related to celiac/gluten. My ds and I both have redness under our eyes and I didn't know if that was something to do with gluten or not. thanks!

Blah, I finally mustered up the courage to call my doc and request a blood test but the clinic is closed! I guess they've got Halloween business to take care of. Hopefully, I can keep my resolve and do it tomorrow lol.

Hi there. I really hope you can get this figured out...if it is not gluten that is causing your symptoms, please get tested for lyme disease. YOu can check out the symptoms and see if they sound anything like yours ....I"m not saying you have it but it is something else to look into...I've also read that Lyme disease can mimic Ms. That's something I didn't eve know about til a few days ago and you can have digestive problems too,neurological symptoms and more. Just wanted to throw this out here as something else to possibly to check into.

Diagnostic labs correct their reference ranges for age and gender. They are constantly and carefully adjusting the ranges to reflect the most recent research and the population ranges they see when running the tests according to their specific protocols. It's not a good idea to try to look up reference ranges on the web because tests can be run different ways and reported in different units. Your son is well below normal, but I can't comment on why the celiac center is quibbling over 1 mg/dL. His IgA is certainly low enough to give inaccurate results on IgA celiac tests.

A DGP IgG result of <0.4 with a range of <4.9 is an absolutely normal, non-celiac result. DGP is above the reference range when it's positive, not well below.

Thank you! So if his total serum IgA is low and the IgA tests are inaccurate...should I just go by the DGP IgG or do you think I should have other tests run? thanks!

Hi and thanks everyone for replying. We did try behavior therapy over the summer at Easter Seals but it didn't make a difference, we had to stop therapy because we can not afford the copays anymore. I don't think we'd qualify for free therapy or a reduced price ...we don't make a ton of money but Easter Seals and other places don't take bills into factor. :*(

The physical activity to burn off excess energy is a good idea! I had just told my dh that I"d like to get a mini trampoline cause ds likes to jump ~ he also just likes to ride his tricycle, not a two wheeler yet. Anything that costs money is out of the question right now...I"d love to get him into karate/tae kwan do but maybe next year when we can get a lot of our bills paid off. We've had a lot of medical bills this year.

Also, my ds was tested for autism right before he turned 3. The specialists said he didn't meet the criteria. He's been in school since he was 3..started in early childhood. He has speech apraxia(almost resolved) so he gets speech and ot at school. He also is in the social group but right now they are just working on feelings.

In regards to the computer fiasco, I was there at the computer with him, trying to explain that we didn't need to put the disc in, the game was already on the computer and we just had to click on the icon. I guess I could have just put the disc in to avoid the whole scene?? He is a little ocd about things and will go on and on and sometimes redirecting his behavior doesn't work. The time out was for screaming, I can see why it doesn't work now. but what am I supposed to do when he screams like that? ignore it? I don't know, that just seems like he would think he could scream whenever he doesn't get his way because I don't do anyting about it?? If he throws toys again, I will make him pick them up, even if I have to wait for him to pick them up.

I will ask his teacher about parent workshops...nothing has been said to me about this. as far as a behavior plan goes, there's a behavior chart at school and when he gets his star to the top of the chart he gets to pick out a toy. I guess I could do something like that here, but I don't always have the money to buy prizes...if you know of anything else that could help let me know.

I will look into the GAPS diet. thanks!

One last question..if he acts up at school, I know he gets recess taken away, or he might get play time taken away, but should I do anything about it here at home?

Hi, his teacher wrote he is in the high average range...he's the highest in his class(special ed because they won't let him be in a regular class) so his report card was shown to a "regular" kindergarten teacher and she said he's the highest in academics in her class too!! His behavior is holding him back along with social and emotional issues. I have a really smart kid that is thrown into special ed because of behavior.

today he came home and wanted to play a game on the computer..it was already on here but he didn't get it??? so he purposely tried to go downstairs(I had told him no) he screamed, got time out, it's a constant screaming and getting off of the chair. I can't put him in time out in his room because he will pee his pants. I seriously don't know what to do when he acts like this because nothing has worked. he also purposely threw stuff on the floor, wouldn't pick up, so I took it all away. ugh. it's been a rough day. and then at the end of the school day, he refused to pack his backpack and yanked his lunch box off the hook and broke it!! aaaaaaaaaaaaaaaaaaaaaaaahhhh....oh yeah, all his tests for celiac are negative so dh refuses to try the gluten-free diet for him. complains it costs way too much. :*( sorry just had to vent.

I know this is an old post but I stumbled across it looking for the same information. My 12 yo IgA came back at 45 but I wanted to know the age adjusted levels. I found this at the Mayo clinic site so it should be good info and I'm posting in case anyone else out there is looking for this:

Immunoglobulin A

0-<5 months: 7-37 mg/dL

5-<9 months: 16-50 mg/dL

9-<15 months: 27-66 mg/dL

15-<24 months: 36-79 mg/dL

2-<4 years: 27-246 mg/dL

4-<7 years: 29-256 mg/dL

7-<10 years: 34-274 mg/dL

10-<13 years: 42-295 mg/dL

13-<16 years: 52-319 mg/dL

16-<18 years: 60-337 mg/dL

> or =18 years: 61-356 mg/dL

Hope this helps,

Sharon

so should we go by this or the lab ranges that are on the test results? my son's total serum IgA is 21... range for his age (6) is 41-395 found out from the celiac center they don't consider 21 low enough to be IgA deficient. Anything @20 mg/dl or higher is not IgA deficient. don't you think 21 is pretty darn close though?? Can someone please comment on this and what about the DGP IgG this one was <0.4 EU/ml range is <4.9 EU/ml does that look pretty close?? thank you !! ps, I don't see a "fast reply" to stop quoting everyone when I post. :/

I have this upper left quadrant pain as well; this is the pain that caused me to get an endoscopy & colonoscopy & CT scan to see what was going on. None of them showed a thing, except for visible scalloping in the intestine, which upon further review, turned out to be Celiac Sprue.

The pain that I have is worse when driving, sitting for long periods of time, eating fatty foods and eating in general (but especially with fatty foods). It's odd, and I haven't been able to find anything that conclusively aggravates or helps it, despite seeing help through many different avenues.

Does anyone that has this had a follow-up biopsy to see if things are truly healed up?

Has anyone with this pain been able to overcome it, and if so how?

hm, everytime I want to reply I keep quoting the person before me, sorry about that, can someone tell me how to fix that? the person's post before me just automatically shows up when I hit add reply.

ok, so I get a lot of pressure and tightness at the top of my ribs on the left. It doesn't matter if I eat or not it's there off and on and everyonce in a while, there's a sharp pain when I breathe but it's mostly intense pressure. it's not gas, it's a very different feeling from gas. anyone else have this? I read that most of you have the sharp pain but mine is more pressure.

I used the email. I emailed the actual copies of my kids labs ( they want the actual copies in case you re- type them wrong). I got a response within a day or two. However, the doctor that reads them was visiting his family in Italy so it was a few weeks until he got back. But they told me that.

ok, thanks, email will be the best way for me to communicate since my kids will be home from school tomorrow and it's hard to talk on the phone when they are home~ so one last question....do the docs read and go over the test results for free or is there a charge? and are they very helpful?