ArPlasma

Hello! Welcome! I am very new to this all thing myself( I do not have Celiac disease and no history of it on my side of the family).

My DS1 who is 6 just had his biopsy done 2 weeks ago and we will know the results by the end of this week( finally!!!). He tested positive on the TTG- IgA and igg tests as well as EMA. He had been complaining about his tummy on a daily basis without much emphasis on it( very resilient little man).

He s been gluten-free for 2 weeks now and he has not had a tummy ache for almost as long. Only one episode of headache as well as opposed to almost daily. He has had some attention issues going on for a while, complained about pain in his knees and arms ( shooting pain), also one of his auditory nerve is not responding well with no obvious reason( clean MRI). After ruling out absence seizure, the neurologist had suggested a trial of ADD meds but when he heard the positive Celiac blood test, he suggested we wait at least 6 months to see if the attention issues improve. He seemed to think they might and from I understand/ have read so far there seem to be an association between malabsorption and attention deficit issues especially in children.

DS' s pediatrician did not think he was a likely candidate for Celiac( out of charts for growth) but I insisted based on my DH's side of family history. Turns out my husband got tested afterwards as well and he is positive on TTG tests.

Good luck with everything! I am sure others with more experience with dealing with Celiac disease with their children will chime in soon.

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).

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).

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!

Yes, Kix is a cereal which is one of my son's 2 favorite ones( other one is Chex which has a gluten-free version, including the generic version from our local store).

He is feeling a bit better this evening. At least no tummy ache which is a big deal.

I've heard of side effects of going gluten- free and was wondering how common it is. DS has a terrible headache today and am wondering whether he is reacting to something( DH fed him some KIX this morning, he thought it was gluten-free, do others react to it?) or if it is part of withdrawal symptoms. He has not had any stomach pain since last Friday( unheard of for so long!).

Right now he has no belly pain just a headache and he looks really pale, no temperature either.

Cara I wish more doctors would look deeper into it. I asked for further testing for my younger son and his pediatrician was not keen on it at all. We have started the gluten-free diet with our older son since we're passed biopsy stage. We plan on remaining on it no matter what the results of the biopsy are. The GI said he sticks by 'gold standard' so no obvious damage, in spite of high numbers and strong family history,means no diagnostic in his book.

Even if we don't get the diagnosis, we will be sticking to gluten-free.

Also we retested my DD this morning since they made a mistake and did not prescribe the right test( not Celiac panel test).

We are 6 days gluten-free so far.

Huh! Thanks for the link. My husband has started collecting the receipts for gluten-free food. He is on a mission to do something similar this year, if only to know how much more we spend on food and in the hope that it might be useful.

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.

Thanks for the article!

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.

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).

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?

My son has sensory issues( loud noise , water on his face, itchiness of some clothing). We just started the gluten- free diet, so I can't really tell you much about it's impact yet.

I am really hoping not to see too much of gluten- withdrawal effects at this point.

Thank you for the link to the report nvsmom. I'vebeen reading through it( in addition to your reference on page 12 for the differ serologic tests accuracy) and I will definitely keep it handy for future reference.

We have started our son on the gluten- free diet and sorted out/ cleaned out things in the kitchen. I think for now, it might be easier to keep everything at home gluten free.

Without a diagnostic, I am not sure how cooperative his school will be and things like school parties might be tricky to navigate.

Thanks for the encouragement. We are taking it one day at a time, trying not to think too much about the consequences/ meaning of a negative/ inconclusive biopsy. My husband and I have decided to keep our son on at least 6 months trial of the gluten-free diet even if the biopsy is negative. If positive, it will obviously be a lifetime commitment.

Our GI DX my oldest even with a negative biopsy and her blood work in the "positive, but not crazy high" category.  She was willing to look beyond the "golden standard" and focus on the entire package (sibling DX, lack of growth for over a year, GI issues, etc).  Perhaps your GI will do the same?  Either way, what's the harm with stopping gluten to see if his symptoms lessen/disappear.

 

PS - my oldest also does those blank stares - almost like she's looking right through me.  I've mentioned it to a few people and they all look at me like I'm nuts.  You are the first person to know what I'm talking about!

My son's teacher and a few family members have noticed these stares. Funny because that's something my husband and FIL do from time to time as they lose track of the conversation for a bit. They sometimes start a sentence then pause out of the blue for a few seconds. It can be quite annoying but has become somewhat of a family joke for them.

The first GI we saw in the practice mentioned these stares were not uncommon to him. It was the first time a doctor seemed to have an understanding of it or that I did not feel a bit crazy after explaining it and no explanation could be conjectured.

Thank you both for the replies.

We had our first gluten free dinner tonight( at least I hope so as I have not done a deep kitchen cleaning/ sorting out session yet). One of my husband's aunts sent us a gluten free care package with a bunch of her favorite products. It was very nice and very much welcome as I am a bit on the overwhelmed side of things.

I agree that blood test numbers and family history strongly suggest that we should start a gluten- free diet now. I am just a bit unsure on how to proceed right now, where to start, etc. I will be going through the link. ( Thanks! ).

My son also has some nervous( ?) ticks and what looks like spasms at times.

That would be interesting if his growth levels a bit, he's been consistently outside the growth chart, above the 99th percentile, taller than his 8 year old cousins. Which seemed to comfort his pediatrician about the improbability of Celiac disease( before blood tests).

Also for reference, the GI said they took 15 samples, which seems like a decent number.

Waiting is definitely not my forte.

Greetings,

I am new to the forum. My 6- year-old son just had his biopsy done today and we will not have the results until his next GI appointment( jan 31).

Talking to the GI who did the biopsy stressed me out a bit about the probability of a negative result. Then what? He said they suggest staying on gluten and testing blood levels again in 6 months, then do a repeat biopsy if blood levels still positive.

My son did not have any visible damage, which I felt like they were expecting to see some( I should have asked how much of an indicator it was). We have been staying on a normal gluten diet until the biopsy( we don't eat a lot of bread but my son has had a sandwich or at least a few crackers containing gluten in it consistently on a daily basis but we eat mostly rice/ beans/ potatoes/ veggies). Not sure how much of an impact it is on the absence of visible stomach damage( which I am in a sense relieved that it is not as bad as it could otherwise be).

For reference, his blood tests results were as follow:

Tissue transglutam AB IGG 46

Tissue transglutam AB IGA>100

Endomysial AB(IGA) positive 1:160

Also Celiac runs in my husband's family( 3 aunts and uncle diagnosed, a brother self diagnosed with gluten sensitivity but who may well be full blown Celiac given his symptoms).

Also my son is quite tall and his pediatrician did not want to test Celiac at first because he did not fit the picture, I insisted. His 'symptoms' are above belly button pain, chronic constipation, migraine headache, knee, arm, feet oain, blank stares( for lack of better description, he sometimes looks like he is not there, absence seizures have been ruled out). He also has a speech delay which we don't know if it has anything to do with it all. His auditory brainstem response are also poor though no obvious reason on MRI.

Also my husband blood test came back positive on the TTG IGA, not on other tithers.

The idea of leaving him on gluten in case of a negative biopsy results is not appealing at all to me especially since the GI admitted himself that they were not absolutely sure what to do with positive blood tests and negative biopsy as in not sure what is really happening in the body.

Anyway, as I said earlier I am quite stressed out about this. This conversation with the GI made me doubt that Celiac was the real culprit or at least part of the reasons for my son's symptoms. Sorry for the long post!