More Testing For Younger Son?

[ArPlasma]

For reference, we are awaiting biopsy results for older son with positive blood results for celiac disease,also strong family history of diagnosed celiac disease and gluten sensitivity.

We tested our 2 younger children, both came back negative but we are still concerned about younger son in particular who has had ongoing urticaria hives since end of Ugust, barely relieved by antihistamines( some days are worse than other). We've done several allergy testing all negative.

He also has on and off diarrhea.

I am very confused by the different serologic tests.

He is 2 and was tested for:

TTG IGG result 5 ( negative), ref is > 6 positive

TTG IGA < 1( negative), ref is >4

Endomysial AB(IGa) negative

My daughter was tested for

iGA serum result 102 ref range 33-235

IGG serum 930 ref range 592-1723

Endomysial AB(IGA) negative

Is the IGA serum test the same thing as the DGP IGA?

I have read that the TTG tests could be less accurate in toddlers and the DGP one was recommended as well. I also read about chronic urticaria presentation in some Celiac patients. Since we cannot seem to find what is going with DS2, allergy doc said most likely 'autoimmune hives' but no idea what it is really.

Of course DD also has unexplained rashes/ hives( like a band aid related one tonight?!!! That will hopefully be gone tomorrow) but nothing as bad and long lasting as DS2.

Can I start crying now?

[nvsmom]

(hugs) It's hard when your babies aren't well.  

 

You daughter did not have the proper celiac tests done.The serum (blood) IgA and IgG tests are like control tests for different parents of the immune system in the body. The total serum IgA is often run for celiac testing because a high proportion (1/20) of celiacs are deficient in IgA, compared to the regular population, which will affect celiac tests based on IgA (like tTG IgA, DGP IgA, and EMA IgA).

 

IgA deals with the part of the immune system that is in the mucosal lining, and the IgG (immunoglobulin G) is more of an systemic part of the immune system.

 

DGP stands for deaminated gliadin peptide. Endomysial AB (antibodies) is the EMA IgA. Anti tissue transglutaminase is the tTG. The old AGA tests are anti-gliadin antibodies.

 

Can you get them tested with DGP IgA and DGP IgG? They really are superior tests for kids. If you can't get any more testing done, you could do a gluten-free trila of a few months. If their health improves then you have a definite answer. If they do not go gluten-free, they should be retested every couple of years until at least adulthood as celiac disease can appear at any time - which usually just means that their antibody levels are finally high enough to be detectable. Hopefully tests will improve in the future.

[ArPlasma]

Thank you so much for this reply! We were not even thinking about testing DD again, thinking she had the right ones done already.

I feel like I live in the land of unexplained hives and tummy aches with our children.

I will call their doctor to get a DGP IgA and IgG script. We have been thinking of switching doctor for a while ( other incidents) we were waiting for things to be more clear with DS1( clear diagnostic).

[greenbeanie]

Your comment about Band-aid related hives jumped out at me. This is not related to celiac, but could he be allergic to latex? Many Band-aids have latex in them. My daughter and I are both allergic to latex. I used to get rashes all the time around the waistband of elastic shorts, from cheap bathing suits, and sometimes from touching rubber things. (Most elastic in clothing isn't made from latex anymore, though.) My daughter had projectile vomiting from latex bottle nipples, which is how we discovered the allergy, and she used to get rashes from just touching another child's shirt with one of those rubber decal designs on it, or from playing with a rubber-gripped toy or the rubber soles of shoes. The shirt thing was especially hard to avoid, since many kids' shirts have rubber-paint pictures on them and she'd often touch her friends' shirts even though she never wore that kind herself. She seems to be less sensitive as she gets older, thank goodness.

 

Anyhow, a rash from Band-aids is a common sign of a latex allergy. Any adhesive can irritate sensitive skin, though, so it could just be coincidence.

[nvsmom]

Yeah, those DGP tests are better - not perfect but better that tTG and EMA tests for kids.  Your DS's tTG IgG was soooo close to being a positive... something is up there I think. The DGP might tell you more.

 

If you can't get more testing, you might want to make all the kids gluten-free just to be safe and to simplify things in the home. I did that with my three kids when two showed signs of gluten sensitivity (they had negative tTG IgA tests which is the only test available in our area).

 

Best wishes. 

[ArPlasma]

Just got the scripts for DD and DS!

Going for tTG ones for DD and DGP ones for DS. I was hoping to get the DGP one as well for DD but that's what the secretary had, the pediatrician was not at the practice today.

[ArPlasma]

Green beanie, I thought about latex too. It is the first time she reacted to band aid. It has still not gone away which from what I 've read indicate more if a reaction to the adhesive, even in the latex fee ones. I am keeping an eye on that( and a billion other things oh my). She tends to see them as a 'fashion accessory' so we will definitely have to monitor her more on that.

[africanqueen99]

Re: band aid.  Was it one with a stronger adhesive?  (You know, not the cheapies that fall off, but one that when you pull it off it pulls the skin.)  ALL my kids (me too) get a rash with the stronger adhesive ones because we tend to leave them on longer.  I think it's lack of breathing more than a latex issue.  At least that's my sad $.02.

 

Anyway, I buy the cheapies now - and only in "skin" color - so they aren't encouraged to use them as decoration.

[pricklypear1971]

Re: band aid. Was it one with a stronger adhesive? (You know, not the cheapies that fall off, but one that when you pull it off it pulls the skin.) ALL my kids (me too) get a rash with the stronger adhesive ones because we tend to leave them on longer. I think it's lack of breathing more than a latex issue. At least that's my sad $.02.

Anyway, I buy the cheapies now - and only in "skin" color - so they aren't encouraged to use them as decoration.

My son decorates himself with all band aids. If his arm hurts, it needs a band aid (eye roll).

My son has mild dermagraphia - so all band aids leave a temporary mark. So do back scratches.... I notice when he's sick or allergies are high the dermagraphia is worse.

[ArPlasma]

Update:

Results for DS2 came back negative for both the deaminated gliadin IgG and IgA ( results were 3 for both which is less than 20 to be positive).

His rash is still here, I thought it had gone away on Thursday( it did for a day and half, longest it's ever been) and thought it might have been related to bananas( I'm lost at this point and really don't know what else it could be) but it came back stronger than ever by the end of Friday and his left eye was swollen this morning so back to Zyrtec.

He's also been gluten free for a week now ( I thought longer than that but a miscommunication had occurred with my husband who is the only one still eating gluten in the house since he is going for endoscopy next).

As I said his chronic urticaria is really unnerving!

We have done Celiac panel( tTg, EMA, DGP) and also done : ESR, CBC( H/H, RBC, indices, WBC, PLT), all came back normal even his histamine release is normal.(?!)

We are still waiting for DD Celiac panel( was done at same time as DS2, same lab).

Good news is DS1 has not had tummy ache in 2 weeks( a day or so after after going gluten free) and only one bad headache. His focus seems to have increased quite a bit too. So yay to that!

[nvsmom]

I'm glad Ds1 is feeling better.

 

Are you going to convert the other kids to gluten-free (for a few months) to see if that improves their health too? I think I mentioned to you before that my kids all tested negative to celiac disease BUT a couple of them are definitely gluten intolerant so our whole house is now gluten-free. According to doctors, my kids would be called non-celiac gluten intolerant (NCGI) but with a mom who is a celiac, I'm guessing that it's more likely that the test they took faile them or their celiac disease wasn't advanced enough to be detected.

 

If you decide to let them conitue eating gluten, you should retest them every couple of years, or as soon as symptoms appear, as celiac disease can appear anytime in life - I interpret that medical advice to mean that the antibodies that are in a celiac's system finally are at a high enough level to be detected by current testing techniques.  LOL 

 

Have you looked at the MCAS discussion? Perhaps it could apply to your son?

https://www.celiac.com/forums/topic/105835-mast-cell-activation-syndrome-mcas/

[ArPlasma]

We've decided to have the house gluten free, it will be easier to monitor what DS1 eats. My husband still has his bread, crackers, beer at least until his endo in a couple of weeks. After that, all non- celiac will eat gluten outside for a while.

Since DS2 is at home with me for now, he will be gluten-free for a while and we will cautious when introducing it back to him and monitor any reaction.

DD is eating gluten-free at home and lunch( I make their meals) but if they have school parties she can have what she likes.

Thanks for the link! I actually had started reading about it.

I am a little nervous about what this chronic rash could be and just want to make sure that he has been checked for the things that would have long lasting consequences if not treated.

I hear you about the tests for Celiac. Waiting for obvious signs of damage to give a diagnostic, even with a strong family history, somehow just does not compute fully for me.

I wonder a bit about the probability numbers that 1st or 2nd degre relatives might have the disease as well. My husband's family is Celiac central and they definitely beat the odds( not counting his siblings suffering with A combo of IBS, heart burn, itchy skin rash, etc. but still in denial).

[nvsmom]

I think, and I'm not sure about this number, that it's somewhere around a 10% chance of getting celiac if a first degree relative has it but it doesn't seem to work out that way. It usually seems like a few people have it in one family, or just the one isolated person - that's just my observation and opinion though.

 

I think having the house gluten-free does make things easier in the long run. It takes a few months to settle into it but it does get easier. My kids have been gluten-free for a year and I can honestly say the only time an issue comes up is when we go places and I haven't brought a comparable treat to what other kids are getting - problems don't happen often.

[ArPlasma]

Yes, I think it is about 10%( did not check). I do not question the number itself because I am sure it is based on a wide data set but in the case of my husband family they surely beat the odds.( I should have said that better). Of his father's family, his Dad is the only non- Celiac( 4 siblings diagnosed). He has also never been tested and is partisan of ignorance is bliss. My husband's 3 other siblings have IBS and a lot of symptoms than can be associated with Celiac/ gluten sensitivity but don't think they need to be tested( don't see it as a big deal, one of his brothers went as far as as going gluten-free for 6 mnths, felt better, now eats gluten on and off now and 'copes' with side effects). My husband just tested positive on ttg tests( he did not think he fit the picture either ?!). He also has several first cousin diagnosed.

In short, I was trying to say that I second guess the 10% in their case, they also might have some other thing going on( additional factors increasing probability?)...a researcher dream to put his/ her hands on such a data set.( joking).