Options - 7 year old boy - Helicobacter pylori and serology

[Kathleen JJ]

Hi all,

I'm very new at this and 'this' has been quite a rollercoaster ride.

 

Last august my 7 year old son suddenly had these colic like pain attacks that would come a few times per day/night during 10 days. Because they were that bad and because our older daughter had her appendix taken out at 7, we ended up at ER twice to have him checked out. On both accounts blood was taken, on one account an ultrasound was made, showing swollen lymph nodes around the stomach, and the working theory was it was a violent reaction to a viral infection (even though he was not nauseous nor had diarrhea or anything like that). After 10 days it stopped as suddenly as it came on.

 

On October 1d my daughter started vomiting in the middle of the night, had a fever, and my son also threw up once (no fever). We kept them home from school, daughter kept on vomiting, fever stayed, son was perfectly healthy during the day, although he only ate yoghurt to be safe. The plan was to let him go to school the day after. In the night prior to his school return however, he woke up at 1, screaming with pain, begging to go to ER, which we did - the pain from august had returned.

 

Again bloodwork, but nothing found. It ended up only being that one pain attack, but because they were that bad, we went to the pediatrician the week after to have him checked up more thoroughly. He is a very energetic, sporty boy and he showed off his six pack with great pride to the doctor. She said he looked as an example of health, but did a more extended search because as the last blood test his liver values had been ever so slightly raised and she wanted to see how they'd do after a month. 

 

So on November 8 we had his blood drawn again. His liver values had returned to normal, which did confirm the working theory that his pains were viral-infection triggered.

 

However, to everyone's (including the doctor) surprise, he also had these values:

Transglutaminase IgA + >128 U/mL
Gliadine IgG + 123.0 U/mL 

 

I take it these are quite high. So last Tuesday he got his gastroscopy done, we'll have the result around the 25d we hope. 

Whilst going for taking samples of the bowel, the gastro enterologist did notice some nodes in his stomach that present like a reaction to a Helicobacter pylori type infection, which would very much explain the type of pains he had.

 

We are still very much in shock by the Ceoliakie diagnosis (I know, it still needs to be confirmed by the biopsy, but with those numbers we kind of expect it) as he has no symptoms at all. The doctor said 'once he goes on a gluten free diet you'll see him blossom into an energetic, more happy boy' and we're like: but he is bouncing around singing and joking all day, I really can't imagine him being MORE energetic and happy - meaning, he's welcome to be that of course, but this is not a tired, withdrawn kid.

 

And even if the biopsy gets back negative (unlikely), what could these numbers have meant then? Could the Helicobacter pylori have an influence on this?

 

I have so many questions but are only eligible for a consult on December 6d so my data driven mind is going crazy having so little information or knowing so little about what everything means...

 

Kind regards,
Kathleen

 

[cristiana]

28 minutes ago, Kathleen JJ said:

Hi all,

I'm very new at this and 'this' has been quite a rollercoaster ride.

 

Last august my 7 year old son suddenly had these colic like pain attacks that would come a few times per day/night during 10 days. Because they were that bad and because our older daughter had her appendix taken out at 7, we ended up at ER twice to have him checked out. On both accounts blood was taken, on one account an ultrasound was made, showing swollen lymph nodes around the stomach, and the working theory was it was a violent reaction to a viral infection (even though he was not nauseous nor had diarrhea or anything like that). After 10 days it stopped as suddenly as it came on.

 

On October 1d my daughter started vomiting in the middle of the night, had a fever, and my son also threw up once (no fever). We kept them home from school, daughter kept on vomiting, fever stayed, son was perfectly healthy during the day, although he only ate yoghurt to be safe. The plan was to let him go to school the day after. In the night prior to his school return however, he woke up at 1, screaming with pain, begging to go to ER, which we did - the pain from august had returned.

 

Again bloodwork, but nothing found. It ended up only being that one pain attack, but because they were that bad, we went to the pediatrician the week after to have him checked up more thoroughly. He is a very energetic, sporty boy and he showed off his six pack with great pride to the doctor. She said he looked as an example of health, but did a more extended search because as the last blood test his liver values had been ever so slightly raised and she wanted to see how they'd do after a month. 

 

So on November 8 we had his blood drawn again. His liver values had returned to normal, which did confirm the working theory that his pains were viral-infection triggered.

 

However, to everyone's (including the doctor) surprise, he also had these values:

Transglutaminase IgA + >128 U/mL
Gliadine IgG + 123.0 U/mL 

 

I take it these are quite high. So last Tuesday he got his gastroscopy done, we'll have the result around the 25d we hope. 

Whilst going for taking samples of the bowel, the gastro enterologist did notice some nodes in his stomach that present like a reaction to a Helicobacter pylori type infection, which would very much explain the type of pains he had.

 

We are still very much in shock by the Ceoliakie diagnosis (I know, it still needs to be confirmed by the biopsy, but with those numbers we kind of expect it) as he has no symptoms at all. The doctor said 'once he goes on a gluten free diet you'll see him blossom into an energetic, more happy boy' and we're like: but he is bouncing around singing and joking all day, I really can't imagine him being MORE energetic and happy - meaning, he's welcome to be that of course, but this is not a tired, withdrawn kid.

 

And even if the biopsy gets back negative (unlikely), what could these numbers have meant then? Could the Helicobacter pylori have an influence on this?

 

I have so many questions but are only eligible for a consult on December 6d so my data driven mind is going crazy having so little information or knowing so little about what everything means...

 

Kind regards,
Kathleen

 

Hi Kathleen

Welcome to the forum.

I am based in the UK so I am just picking this post up before our US based moderators appear.  I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please?

We see a lot of coeliacs who also have helicobacter pylori on this forum.  I am not sure how that would reflect in the blood results so I will leave this to be answered by my more experienced colleagues @trents or @Scott Adams.

Obviously, you won't really know for sure where things stand until you have your meeting with the consultant.  I am sorry that you have to wait, but it will be worth knowing one way or another.  Apart from his recent gastric issues, it is fantastic to know that your son is otherwise a picture of health.  But it is worth bearing in mind that undiagnosed coeliac disease can cause health issues in the longer term, so far better to know now if he does turn out to have coeliac disease and adapt your son's diet accordingly, before other health issues have a chance to appear.

Cristiana

 

Edited Thursday at 09:30 AM by cristiana

[Kathleen JJ]

Thank you for your reaction. The reference values are both "<10", although I found a medical paper from Netherlands (I'm Belgian) who use the same values and there the see a positive daignosis as twice more then 200 and a positive biopsie. I didn't see how to change this in my original message, sorry...

[Kathleen JJ]

And yes, of course it's better to know and we will adjust. 

It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made.

 

I'm really burdened by the potential social impact for him. He so loves to go to a restaurant as a family - I'll guess that's finished. Going to birthday parties at another kids house? I am reading about Coeliacs and apparently the fact that something as much as TOUCHED something with wheat is enough, even if he doesn't feel the symptoms - how can we control that bar from keeping him locked up? 

 

And the worst worry of all: how do you tell a little boy to do all of this to not have symptoms that he does not have. If he'd been having horrible diarrhea or feeling really tired, we could tell him 'see, you feel so much better now, that kind of food was just not good for your body', but now, what will our argument be?

For clarity: of course we will put him on the diet, I am not saying I don't believe in the necessity of that, it is just that it will be quite a stretch to 'sell' it to him 😞

[trents]

Kathleen, I am not sure I agree with you that your son is asymptomatic with regard to his celiac disease. The horrible stomach pains you describe in your first post could be celiac symptoms as easily as they could be H. Pylori or viral infection symptoms.

Yes, the social impact of having celiac disease is perhaps the most difficult dimension of the disorder to deal with. It requires thinking ahead and providing safe substitutes for snacks and party foods so that your son doesn't feel left out and singled out or different. Some of those feeling are unavoidable but they can be minimized. Dining at eateries is a huge challenge to celiacs as even when you order gluten free menu items they are often heavily cross contaminated back in the kitchen from being cooked together with wheat things or handled with the same utensils. You need to be bold in asking a lot of questions and requesting that your son's food be cooked in separate pots and pans. It's awkward at first but you get used to it.

Speaking of CC (Cross Contamination), how careful you have to be with this will depend on the sensitivity level to gluten your son will demonstrate. This can be a challenge to get a handle on for those celiacs who are of the "silent" type. By "silent" is meant they are largely asymptomatic. It is common for sensitivity levels to increase over time when gluten is withdrawn from the diet as whatever tolerance we may have had to gluten when we were being exposed to it constantly may disappear. Whether or not that proves to be the case, it would be important for you to have his antibody levels checked at regular intervals (say every six months to a year) to check for compliance with the gluten free diet. And I would not worry about him touching wheat food products. It is highly unlikely that any significant exposure will occur transdermally. That would only be an issue for the most extremely sensitive subset of celiacs. Of course, you wouldn't want him getting wheat flour on his hands and then putting fingers in his mouth. 

At school, you will need to pack his lunches and also have conversations with the school dietary staff to ensure his safety. 

I know this all seems overwhelming right now but you are not the only parents who are having to go through this kind of thing. Celiac disease is not uncommon and thankfully there is much more public awareness about it than there was a generation ago. It can be done. It's the kind of thing that requires parents to be willing to find that extra gear of assertiveness in order to keep their child safe and to guard his/her psyche as much as possible. Count your blessings. It could be worse. He doesn't have cancer.

This might be helpful in getting off to a good start with eating gluten free. Some of it may be overkill depending on how sensitive to minute levels of gluten your son is:

 

Edited Thursday at 06:14 PM by trents

[cristiana]

If your son eventually becomes very symptomatic, that in itself will help keep him on the diet.  I had a friend who was diagnosed roughly the same time as me and she used to tell me a lot that she could get away with eating certain gluten containing foods.  (Not a good thing to do, but she did all the same).  In time she was unable to tolerate them anymore,  and is now very strict with her diet.  

The football situation with the candy:   here in the UK at least, a lot of mainstream chocolate bars and sweets don't actually contain gluten (Bounty Bar, Snickers, Cadbury's Whirl, Crunchie etc) and you may find that that is the case where you live.  

 

 

[Wheatwacked]

You can sell it better if the whole family does gluten free.  If he does have Celiac Diease, it is genetic so either you, your spouse, or both have a 40% chance of also having Celiac.  There are over 200 non classic symptoms also caused by celiac disease not often considered by doctors. Joint pain, muscle pain, muscle cramps, osteoporosis, and allergies for starters.

 

[Kathleen JJ]

@trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get.

But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds examples - and also non of these are present). I get that severe pains can be a symptom, though the fact that they were omnipresent for 10 days (the exact time his viral values were up) and then 6 weeks later 1 episode also when the family was going through a stomach bug, and since then (nor ever before) none, this logically seems more related to a virus then a symptom of Coeliac, as I'd think this would have to be more present on a regular basis? He always has loved gluten-containing food and at that time was rather having less of it (due to the bug and feeling a little under the weather so eating more yoghurt and the likes then cookies) then more of it. It just doesn't sound all that logical.

That being said, I comprehend AND accept that things can not always be logical.

 

I am trying to understand what you are saying about the tolerance - so as long as he eats gluten, he will have some tolerance to it, but when he stops, and say accidentally ingests something, he will react more as the tolerance is lower? It sounds so illogical (hmm, I see a pattern with myself: really looking for logic in a very illogical condition).

And how do you interpret the values very 6 months as you maybe don't know there has been an accidental intake? 

Do the values ever go down to zero or is it a question of getting them mainly lower and can they never go down to normal rates?

 

Normally results of his biopsy are coming in on monday, a little chance they come in today. I've been checking my mail every 10 seconds 🤦🏻‍♀️, this will not be a productive working day I fear 🙄. Then we know the values, but we only have an appointment with the specialized pediatrician and dietitian on December 6d (which in Belgium is a children's holiday comparable to Santa Clause).

So we'll get the full "introduction" to the disorder and approach then.

 

I did talk to the pediatrician and gastrointestinal doctor who did the gastroscopy asking their advice about a plan I was having: to wait to start the diet after the holiday season, we will be abroad in a hotel and to start there in this very new world feels quite stressful for us, but even worse: it will start this journey in a lot of negativity. So our plan is to have a "yummy" party after we return from our trip, during Christmas holidays, inviting some of his friends and buying and making a vast array of gluten free goodies and having them sample and score it. This way it feels like a festive thing AND we can immediately find some things (hopefully) he genuinely like.

 

Both doctors agreed with this approach as this was truly an accidental find and hadn't we tested his blood 2 weeks ago chances were we'd only have found out in a year or 2 so those extra few weeks will not make the difference.

 

So now I'm gathering information, talking to people to know where there's good stuff...

 

 

But what keeps on being quite ununderstandable to me (I hope this will get explained on December 6th) is how it works. So it's auto-immune, meaning gluten trigger an immune response. Is this a black and white thing? Does 1 grain of wheat trigger the same response as a full bowl of spaghetti? And I mean this on a bowel and organs level, not on a symptoms level, as I gather (is this correct?) that not having any symptoms does not mean that his bowel doesn't get attacked?

 

I know it all could be worse, I truly do, but to be honest, this is the 4th "anvil falling on my head out of a clear blue sky" diagnosis that I got for one of my most loved people. First my mother was diagnosed with presenile dementia without anyone in the family having it. Then my unborn daughter turned out to have a chromosomal defect that made that she could only live inside of me and died when she was born, then my sister turned out to have (a tested non genetic 🤯) form of presenile dementia as well, with me being her only caretaker as my mother passed away a few years ago and she has no family of her own. And now this. And this is absolutely not only the least of this row but of course not even in the same ball park. But for my resilience and bearing capacity this just feels not little as it affects the life of my little boy...

 

 

[Kathleen JJ]

@cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there?

And is the notion "gluten free" trustable? And what about "may contain residual gluten"? Is that safe?

[cristiana]

@Kathleen JJ  I am based in the UK.  The following link is to a website for UK based consumers but even post-Brexit, we are still importing from and exporting to mainland Europe, so chances are some of the products mentioned in the link are from the same factory.  Therefore, what your son eats would likely be the same product that I eat when it comes to eating sweets.

https://libereat.com/2021/07/gluten-free-sweets/#:~:text=Haribo Gold Bears are gluten,Starmix

It would therefore appear that Haribo Gold Bears are the ones you need to buy for your son.

In answer to your other questions - yes, European labelling is strict so "Gluten free" is trustable.  However, if I read "Residual gluten" on a label I would say that is not safe for coeliacs.

But always check the ingredients lists first as ingredients do change over time.  When doing this, what you need to avoid (usually printed in bold in the ingredient list) are:

Wheat, barley and rye.

These grains all naturally contain gluten.

Coeliacs must also avoid products which state, "May contain traces of wheat, barley and rye" or products where the statement occurs: "Made in a factory which also handles wheat, barley and rye" 

 

However, one other thing to think about:  oats.  In the UK, we do produce quite a few cakes and some candy which contains oats.   

Oats do not naturally contain gluten, but as the crops are often grown alongside wheat, barley and rye, or processed in the same plants, cross-contamination can occur and they pick up gluten 'en route'.   The good news is that some food producers now grow oats away from these crops, and process them in oat dedicated plants, so you end up with a product called "pure oats" which are suitable for the majority of coeliacs (a minority react to avenin, the oat protein, in the same way they would to gluten, but I won't go into that here - just making you aware in case down the line you think it could be a problem).  

So increasingly, in the UK at least, manufacturers are now printing oats in bold.   In candy production, you might find vegan chocolate which contains oat milk, hence I mention it here.  Unless such a candy bar stated that it was suitable for coeliacs,  your son would have to avoid it.

 

Incidentally, I think the idea of having a party after your holiday is a very wonderful, positive start to your son's gluten-free diet journey.  I was symptomatic by the time I was finally diagnosed with Coeliac Disease and was quite keen to start the diet straight away.  But just a few days after my endoscopy I was due to visit Normandy.  My consultant said to me, "Don't bother about taking up the diet until you get back".   I did try to start it in France but back then French catering establishments didn't seem to appreciate coeliac customers (something my gastroenterologist seemed to know something about!) so I was so glad he told me not to worry until I came home!

Edited 18 hours ago by cristiana

[cristiana]

One thing I ought to add is that although any new medical condition diagnosis can come as a huge shock/blow, navigating the gluten free diet will one day become second nature to you all  Yes, mistakes occur on the way, but it will get easier. 

A few things that have helped me on my journey:

1/ My husband has said to me a few times, and I think it helps. I should to try think of all the food I CAN still eat.  So much natural, unprocessed food, is gluten free, and a whole lot of processed and canned goods available in the supermarkets, too.  I can still eat Heinz Baked Beans and Tomato Soup, for example, and a lot of oven chips are gluten free.  Not all chocolate and candy contains gluten.  Excellent gluten free substitutes now exist in the supermarkets and I've lost count of the times I've been eating a product and shared it with a friend, and they have loved it.  Gluten-free doesn't mean taste free.  A lot of gluten-free substitutes are just as good as the 'real thing'.

2/ As time has gone by, I have met more and more coeliacs and other people who react strongly to gluten. This will happen to your son in time, and it often helps to be able to chat with someone who walks a similar path.  I now have over a dozen such buddies and we share tips and recipes, and also recommend 'safe' restaurants and cafes to each other.  

3/ Family support.  It is good if you can offer a safe haven at home.  My family aren't coeliacs, but the only things they eat that are not gluten free is shop bought bread and pies, and occasionally biscuits and we keep them very separate.  The rest of the time we cook with gluten free substitutes and all eat the same.  I have always been a keen cake baker and my daughter who is not a coeliac actually prefers the crumbly texture of cakes baked with gluten free flour, so she always uses that, even outside the home.  You can spend lots of time cooking and baking with your son, he'll acquire a new skill, and without wishing to boast, if his cakes are as good as mine he will never be short of friends!!  My daughter has quite a following at Uni, and I don't think her friends realise that her cakes are even gluten-free!

I hope some of this serves to encourage you.

Cristiana

 

 

Edited 14 hours ago by cristiana

[Kathleen JJ]

We just had his diagnosis confirmed. The biopsy showed Marsch 3B.

[cristiana]

Thank you for the update.  At least now you know what you are dealing with.  Is the system similar to that in the UK in that you will have a follow-up with the gastroenterologist where you can ask any questions you have, and also a referral to a nutritionist?

[Kathleen JJ]

Well, we have an appointment with a pediatrician who specializes in gastrointestinal issues, and subsequently an appointment with a nutritionist on December 6d. So till then it will be google for the win I guess...

I have already found a lot of reassuring alternatives for most of his favorite things, which puts my mind at ease. Now we're just having to see how we will navigate the skitrip in march in an all-in hotel and food on the slopes. And how we will manage offering him warm meals daily as he used to eat at school as we can't manage to cook in time before his soccer practice starts as our commute doesn't allow for it... That kind of thing. But we will manage in the end.

 

I do feel a lot of sadness for him though. He's so small, will never remember the time before the diagnosis when he didn't have to see (some) food(s) as the enemy and even thought that is comforting in a way, it also is quite sad as a notion... I know we now have the opportunity to help him in the best way and help his health, I do. But I also grieve. I can't help it.

[cristiana]

As a parent myself, I find we feel these things very keenly, it is completely understandable that you feel the way you do.

It won't always be easy for your son, of course, but honestly most of the coeliacs I know are very healthy individuals who enjoy life to the full and have adapted very well.  Family support is a massive factor in this, and your son has a wonderfully supportive family which will give him the best start possible.  He is very fortunate to have such an understanding mum.  

On the response to gluten question you posed earlier - yes, many people when they come off gluten completely, after a while when they are exposed to gluten by accident or intentionally they react much more strongly than before, compared to when gluten was regularly being ingested.  I read once that once stop eating gluten completely, it is a bit like your system is fully rested, like a resting army, so when gluten does appear your body it goes all out to deal with the "enemy", throwing everything it can at it.   I am sure someone more scientific can better explain this to you.  But that said, I do have a friend who was diagnosed with coeliac disease just a few weeks before me, is strict with her diet, and she NEVER reacts physically to gluten, bizarrely.  It does happen!

As regards blood tests which your son will no doubt be offered, these are to check for compliance to the gluten free diet as well as to check no other health issues are arising.  But on that first point, the blood test is unlikely to pick up one or two glutening experiences that happen in a year,  it tends to be more helpful to show if there is regular cross-contamination or ingestion of gluten.   When I was unintentionally taking an iron supplement that had gluten in it, it was a blood test that drew my attention to the fact that something was going wrong with my diet.

Edited 16 hours ago by cristiana

[RMJ]

9 hours ago, Kathleen JJ said:

Do the values ever go down to zero or is it a question of getting them mainly lower and can they never go down to normal rates?

Most antibody tests for celiac don’t report a zero because of the way the tests work.  The lowest reportable value is usually <# (# being the lowest quantifiable value for that particular lab’s test).  Values can and should eventually decrease into the normal range.  So for the lab used for your son, a 9 would be considered normal.

9 hours ago, Kathleen JJ said:

But what keeps on being quite ununderstandable to me (I hope this will get explained on December 6th) is how it works. So it's auto-immune, meaning gluten trigger an immune response. Is this a black and white thing? Does 1 grain of wheat trigger the same response as a full bowl of spaghetti? And I mean this on a bowel and organs level, not on a symptoms level, as I gather (is this correct?) that not having any symptoms does not mean that his bowel doesn't get attacked?

A grain of wheat will not trigger the same response as a full bowl of spaghetti. Most biological reactions follow a dose response curve - the larger the dose, the larger the response - in that particular person.

The intestines can be attacked and antibody levels can increase without symptoms.  Also, acute symptoms from a one time “glutening” can happen without antibody levels increasing. The severe acute reactions that some people have within minutes to hours after ingesting gluten appear to be due to cytokines.

I call myself a supersensitive but silent celiac.  I never had obvious symptoms but was tested because I get migraines and my doctor thought there might be a connection.  I do have less fatigue now that I am gluten free.  Still get the occasional migraine unfortunately.

I started my gluten free diet by avoiding things with obvious gluten ingredients,  Antibody levels went down but one was still above normal.  Then I only ate processed foods labeled gluten free. That antibody level decreased more but was still above normal.  Now I eat processed foods that are certified gluten free or small amounts of a few items labeled gluten free from very reputable companies and all my antibody levels are in the normal ranges. The stubborn antibody level rose above normal once, I stopped using gluten free flour from a reputable company and it went back down to normal.

It would almost be easier if I DID react obviously to gluten.  Then I’d know what foods to avoid, instead of relying on once a year blood tests.