Vomiting - celiac or constipation

[sh00148]

Hi there,

my daughter has been tested for celiac and in her initial blood tests she came up as a clear positive of 120+. We are still awaiting an appointment with the gastro team so are currently following a normal diet.

Her diagnosis came about as she was intermittently vomiting and it turned out that she had severe fecal impaction all the way up her digestive tract.

We disimpacted have been having movicol daily since July. In the past two weeks she has begun intermittently vomiting again. I upped her movicol for the past week and her poo was clearly fresh poo with recent food bits coming out. 

Tonight she’s just vomited again after her medicine. I’m at my wits end! Could this actually be the celiac rearing its head? So much undigested food came out. Scrambled egg from 11am for example.

Thanks!

 

[trents]

Welcome to the forum, @sh00148!

How old is your daughter?

Emesis is a classic symptom of celiac disease but the movicol could be exacerbating the problem. I understand you don't want her to become impacted again but don't overdo the movicol. An ounce of prevention is worth a pound of cure but a pound of prevention may be worse than the disease itself.

How sluggish is your healthcare system? How long do you estimate it will take to get an appointment? When you do get an appointment, the gastroenterologist may want to perform a gastroscopy with biopsy to confirm the results of the celiac antibody blood testing. How long will all that take?

I ask all these questions because it might be wise to start your daughter on a gluten free diet now and then undertake a "gluten challenge" beginning about a month before the gastroscopy. I don't know where you live but in some healthcare systems, e.g, the UK, it can take months to get an appointment with a specialist and then quite a bit more time if a procedure is scheduled.

[sh00148]

Thank you so much for replying.

Tonight, we only did one which is her usual maintenance dose and then immediately after she vomited. My gut tells me it’s not the constipation.

I have been waiting 3 weeks for a referral since her initial hospital appointment. I contacted PALs yesterday and the paediatrics department called but seemed clueless about her lack of referral.

I want to start her on gluten free asap as she’s obviously suffering and it would help me with answers. Maybe I will email PALs again tonight and see if they can continue to chase for me.

Can you just explain why the movicol could be exacerbating the issue please? I don’t quite understand. Thank you so much! 

[sh00148]

Sorry to clarify, my daughter is two. 

[trents]

https://www.medicinesfaq.com/brand/movicol

It's basically made up of three different salt compounds. I'm thinking it may irritate the gut but I don't know. At any rate, at the dosage she was using it sounds like food was moving too fast through her gut so I'm thinking the gut was overstimulated.

[sh00148]

Thank you again.

We only upped the movicol due to the vomiting starting again. It’s been 3 times in the last two weeks. No other symptoms.

I’m just so fed up of the waiting and I just want her to get better. 

[trents]

Do you have information concerning the range for negative vs. positive for the celiac antibody blood test that was performed on your daughter? Different labs use different ranges. There is no industry standard in how these tests are constructed. The reason I ask is that it is becoming more common in medical practice to forego the gastroscopy/biopsy for confirmation if the results of the antibody blood testing is 10x normal or greater.

[Scott Adams]

I'm sorry to hear your daughter is going through this—waiting for more answers must feel so difficult, especially with her symptoms intensifying. Given her confirmed celiac marker and her current diet, it's certainly possible her digestive system could be reacting to gluten. Even before a formal diagnosis and starting a gluten-free diet, celiac disease can cause a range of digestive symptoms, including malabsorption and slowed digestion, which might be leading to undigested food and the vomiting you're seeing.

Fecal impaction, along with increased Movicol, could also complicate things. Movicol is generally helpful, but it can sometimes cause mild nausea, especially if her system is already sensitive.

Given the visible undigested food and persistent symptoms, it could be worth checking with her healthcare provider about possibly adjusting the dosage or timing of Movicol to see if that eases the vomiting. If her symptoms escalate or you’re concerned about her nutrition or hydration, it may also be best to seek guidance sooner—some gastroenterology offices offer consults or advice in urgent cases.

[sh00148]

12 minutes ago, trents said:

Do you have information concerning the range for negative vs. positive for the celiac antibody blood test that was performed on your daughter? Different labs use different ranges. There is no industry standard in how these tests are constructed. The reason I ask is that it is becoming more common in medical practice to forego the gastroscopy/biopsy for confirmation if the results of the antibody blood testing is 10x normal or greater.

So our local testing says anything under 5 was normal. 5-10 required further blood tests and 10+ meant celiac is very likely and to refer to gastro. My daughter’s was 120. The paediatrician said it was some of the highest results she’d ever seen. 
 

The more I read on here the more I wonder whether we’ve been dealing with the celiac the whole time and yes she has been impacted (confirmed by X-ray) but she may have just been backed up due to the slow digestive process.

I will start giving her the movicol in the morning as that may help like you say. By the evening, she’s full up and bunged up. She’s pooping well though, every day, sometimes 2-3 times a day. I’ve always adjusted her movicol accordingly I.e if the poo looks too hard or bitty then I increase for a few days so I find it hard to believe she has a blockage again. 
 

I hate feeling like I’m poisoning her at the moment.

Thank you all. 

[sh00148]

13 minutes ago, Scott Adams said:

I'm sorry to hear your daughter is going through this—waiting for more answers must feel so difficult, especially with her symptoms intensifying. Given her confirmed celiac marker and her current diet, it's certainly possible her digestive system could be reacting to gluten. Even before a formal diagnosis and starting a gluten-free diet, celiac disease can cause a range of digestive symptoms, including malabsorption and slowed digestion, which might be leading to undigested food and the vomiting you're seeing.

Fecal impaction, along with increased Movicol, could also complicate things. Movicol is generally helpful, but it can sometimes cause mild nausea, especially if her system is already sensitive.

Given the visible undigested food and persistent symptoms, it could be worth checking with her healthcare provider about possibly adjusting the dosage or timing of Movicol to see if that eases the vomiting. If her symptoms escalate or you’re concerned about her nutrition or hydration, it may also be best to seek guidance sooner—some gastroenterology offices offer consults or advice in urgent cases.

Thank you. I’ve emailed PALs again tonight requesting relatively urgent referral. 

I can’t stand the suffering for her anymore. 
 

I’m going to try and do the movicol in the morning from now on like you suggest as it does seem to bother her in the evening. 

[trents]

If she's pooping regularly and even several times a day, how is it that she is getting "full up and bunged up"? Is there a delay in her stomach emptying into her small bowel?

Well, from the testing numbers you supplied, it is obvious the results are greater than 10x normal and there really is no reasonable doubt that your daughter has celiac disease.

Here is a link if you are interested in starting a gluten free diet trial now. Some of the measures suggested may be only necessary in cases of extreme gluten sensitivity so use some common sense as you read through this: 

I will add, however, that it can be difficult to protect against cross contamination or, "CC" for short, when other family members are still consuming gluten in the home.

Edited October 31, 2024 by trents

[sh00148]

This, I do not know. She was diagnosed after almost daily vomiting in the evening in June/July. Her X-ray showed she was back up all the way up her digestive tract. Even then, she was pooing daily.

Possibly a delay, yes. I don’t know. It’s all a mystery, but the celiac disease must be causing this. 

 
 

 

[trents]

Check my last post as I added some to it.

[sh00148]

3 minutes ago, trents said:

Check my last post as I added some to it.

Thank you. This was my thinking too.

My son is actually undergoing celiac testing now too as he has been experiencing digestive issues most of his life at 5 years old. Not constipation, more loose bowels, flatulence etc. In a very strange way, I’m hoping that his will come back positive too so that we get some answers and can actually start to help him as he’s getting more aware. 
 

I had testing when I was 20 and it came back negative so I think my husband may have it. Just telling him now to get tested too! I’m happy for us all to go gluten-free in the house as I’ve got IBS too so it wouldn’t be a bad thing to avoid it. 
 

 

[Scott Adams]

As @trents mentioned, in the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

 

 

[trents]

Even though you were tested for celiac disease at 20 and it was negative, you can develop celiac disease at any stage of life. Developing active celiac disease requires to elements. 

The first element is the genetic potential. There have been two primary genes connected to the development of celiac disease, HLDQ 2 and HLDQ 8, and some secondary variant genes. About 40% of the population possess one or more of these two genes or their variants but only about 1% of the population ever develops active celiac disease. So, having the genetic potential is insufficient as a standalone diagnostic measure. But not having the genetic potential can be used to rule out celiac disease. Which brings me to the second element:

The second element is some kind of triggering stress event that turns the celiac genes on such that the latent potential is activated. It can be a viral illness, a prolonged emotional/psychological stress event or almost anything. This is kind of the mystery part of the process. So, in science this is known as epigenetics or how genetic potential is influenced by external factors. So, most who have the genetic potential to develop celiac disease never do because the sufficient external triggering stimulus doesn't happen.

There is something else you should be aware of regarding gluten disorders and that is NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

[sh00148]

Thank you. Yes I’d looked into both of these causes. My only thoughts on a triggering event were when my daughter was born and she had breathing difficulties so was in NICU. 
 

It’s all quite fascinating. My husband shows signs of celiac. Low immune system, b12 deficiency, peeling skin and more recently severe and intermittent allergic rhinitis. 
 

We will all get testing, I’m sure. 

[trents]

Many celiacs are what we call "silent". That is, they don't have classic GI symptoms but begin developing other medical problems such as you describe with your husband. 

Also, it is unfortunate that many doctors, and in some cases their hands are tied by stingy healthcare system protocols, do bare minimum testing for celiac disease which would consists of a single test known as the tTG-IGA. This may be the best single test for celiac disease (and inexpensive) but in reality it can miss some who actually do have celiac disease for a variety of reasons, including being IGA deficient. The tTG-IGA should never be ordered apart from the "total IGA" test (for IGA deficiency). There are also other IGA celiac antibody tests available and there are several IGG antibody tests available and a full celiac panel would include all of these. Makes me wonder if when you were tested at 20 if the results would have been different if a full panel had been ordered. Here is an article outlining celiac disease blood antibody testing: 

 

Edited October 31, 2024 by trents

[sh00148]

Thanks.

My email to PALs worked last night and I have got her an appointment for tomorrow. I’m thrilled. Don’t think it’s with gastro, back with paeds, but like you say, might be enough for them to see that her results were so high so no further testing required. 
 

I’m hoping I can go gluten-free shopping tomorrow to celebrate. Would you recommend signing up to celiac Uk charity membership?

[cristiana]

@sh00148

Hello and welcome to the forum, I'm a coeliac based in the UK and I have only just spotted this thread.  Reading your posts about PALs I imagine you are based in the UK too?

I am so sorry for all your daughter has been going through but congratulations on your achievement on getting an appointment.  

I would definitely recommend you join Coeliac UK, and get their food and drink shopping app if you use a smartphone.  They still print copies too and it is a fantastic help, particularly in the early days of your journey.

I would also recommend you pursue a formal diagnosis for your daughter, if you can, because generally speaking most UK coeliacs will get a lot of help from the NHS, such as a nutritionist, annual blood tests and reviews with a gastroenterologist to check for dietary compliance and any complications that can arise from coeliac disease, monitoring for osteopenia/porosis, which is something that coeliacs can be prone to, extra vaccinations where required, and in some regions of the UK, gluten-free staple foodstuffs on prescription.  Also, it has been my experience that once being on the books of a gastroenterologist means I have been able to make appointments direct with the hospital to see one, rather than being re-referred by a GP which saves so much time.

If for some reason your appointment isn't very helpful tomorrow -  I do hope it will be - you may wish to think of one other option: going private just for the diagnosis.  I did this, with a Nuffield based gastroenterologist, who also works for the NHS.  This sped up the diagnosis process by a few months and once diagnosed by him, he offered to put me straight into the NHS for a nutritionist and the other benefits listed above.  If interested, you can ring their offices and find out how much it will cost.  Usually their secretaries are very conversant with the system so should be able to give you the info you require.

Cristiana

 

Edited November 1, 2024 by cristiana

[Wheatwacked]

On 10/31/2024 at 3:05 PM, sh00148 said:

Could this actually be the celiac rearing its head?

Yes.  My son was diagnosed at weaning in 1973

His treatment was Nutramigen until he healed and was weaned to a gluten free diet. 

Nutramigen with Enflora LGG Toddler: Designed for older infants and toddlers aged 9 to 36 months 

While your medical system is causing delay, I think you should start GFD and document improvement and do gluten challenge when the doctors are ready for her.  She is suffering and you don't know how it is affecting her growth and she is positive.  Waiting on the beauracracy.  I still remember how my son suffered while we looked for the reason.  One doctor wanted to give my wife valium because his swollen belly was being caused by her anxiety.  But to know the answer and have to watch her suffer!

[sh00148]

Morning All,

Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation.

Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start gluten-free.

Since starting around a month ago, we have had no vomiting and this is the first week that we haven’t had to give her movicol. She’s had a (currently) a two week break from winter colds which is unheard of for her as she used to have a permanent cold in the winter months. Her tummy is softer and deflating quite a lot and her faces looks a little rosier.

It’s wonderful and although I know we will have tough times in the future and difficulties with eating out, I feel so happy that we can make her better. 
 

Thanks all. 

[cristiana]

So glad @sh00148 that you now have a coeliac diagnosis for your daughter.   We really appreciate your update.  If we can help any further, do not hesitate to get in touch.