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Biopsy results

Lindsey1978

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Lindsey1978 Apprentice
Lindsey1978
Posted

Hi everyone. looking for some more advice.  My 9 yr old has been sick for about 8 weeks now with various symptoms but not enough for the Drs to pinpoint anything. He's had 2 "low" positive coeliac screens and just had a scope on Friday. The Drs seem to be very reluctant to diagnose with anything, just saying it's a bug (he did pick one up in the middle of all this but multiple tests show this is not the cause of all his symptoms), its psychological and sometimes kids are just sick. I took him to a nutritionist who has said coeliac or not she would advise gluten free and lactose free based on his history and test results. I'm happy to do this because it can't hurt and so far the Drs are kind of if we can't diagnose anything there's nothing wrong and just deal with it. Dr rang today with biopsy results which show minor abnormalities but still not clear on what it is and won't diagnose but said to keep eating gluten and will recheck bloods and possibly do a second biopsy in 6-12 months. I just don't understand why it's so hard. If they really don't think it's coeliac that's ok, but why the insistence of staying on gluten. They did do bloods again but he hadn't got those results yet. If they're ruling out coeliac but not looking at anything else but telling us to keep eating gluten why? Sorry I am just so confused and upset and had a plan to get my little boy off gluten and hopefully feeling better whatever the biopsy said and now I don't know what to do. He has shown some improvement but still sick and out of sorts. It seems that at the moment he is breaking down. A nose infection and inflamed ear is the latest after hives, mouth ulcers and vomiting with severe stomach pain for the last 8 weeks. Not to mention being tired and lethargic and complaining of joint pain. And his eczema is making s comeback. What would you do?

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Feeneyja Collaborator
Feeneyja
Posted

It's a personal choice (obviously).

i have a daughter who did not test positive on her gluten challenge. We were told to continue eating gluten. I took her off of it. She did so well before the challenge when gluten free that to make her sick for testing was just heartbreaking.  And her symptoms are primarily neurological.  When I told her GI that she gets neuropathy, loss of use of limbs (she can't walk), balance issues, and tremors when accidentally glutened , I was told she should go back on gluten again for 12 weeks for celiac testing again.

We declined. 

I think the doctors are looking for "official" indication that it is celiac prior to going gluten free because accurate test results once gluten free are nearly impossible.  But it can brew for a long time before you get the all out "official" damage.  The question is, is that official diagnosis worth it?  

I'm sorry you are going through this.  I know how difficult it is.  

TexasJen Collaborator
TexasJen
Posted

I am wondering what tests they ran.  Can you get all of the lab results and the path reports?  If so, publish them here.  OR, take them and get a second opinion from a pediatric GI doc.  Celiac diagnosis in kids is a little different than in adults. 

Maybe they only did an TTG in which case a full celiac panel might be illuminating. Also, if there is positive blood work and even mildly positive biopsy (mild villous blunting), it's hard not to try a gluten free diet for a while and see how he does.

If they aren't going to retest for 6-12 months, another option is to go gluten free for 3 months and then do a gluten challenge for 3 months and look at the differences in his symptoms.

I agree with you that seeing our kids suffer is the worst!  

Good luck

  • 3 months later...
desirun Explorer
desirun
Posted
On June 21, 2017 at 7:51 AM, Feeneyja said:

 

On June 21, 2017 at 7:51 AM, Feeneyja said:

.  And her symptoms are primarily neurological.  When I told her GI that she gets neuropathy, loss of use of limbs (she can't walk), balance issues, and tremors when accidentally glutened , I was told she should go back on gluten again for 12 weeks for celiac testing again.

 

Feeneyja-How old is your daughter? Mine is 13 and experienced almost the same symptoms. She was diagnosed with probable celiac 5 1/2 weeks ago. Her symptoms have been improving off of gluten. Our GI recommended we see a neurologist due to atypical symptoms. This is the first time I've come across a child with a similar presentation.  

desirun Explorer
desirun
Posted
On June 21, 2017 at 7:05 AM, Lindsey1978 said:

Hi everyone. looking for some more advice.  My 9 yr old has been sick for about 8 weeks now with various symptoms but not enough for the Drs to pinpoint anything. He's had 2 "low" positive coeliac screens and just had a scope on Friday. The Drs seem to be very reluctant to diagnose with anything, just saying it's a bug (he did pick one up in the middle of all this but multiple tests show this is not the cause of all his symptoms), its psychological and sometimes kids are just sick. I took him to a nutritionist who has said coeliac or not she would advise gluten free and lactose free based on his history and test results. I'm happy to do this because it can't hurt and so far the Drs are kind of if we can't diagnose anything there's nothing wrong and just deal with it. Dr rang today with biopsy results which show minor abnormalities but still not clear on what it is and won't diagnose but said to keep eating gluten and will recheck bloods and possibly do a second biopsy in 6-12 months. I just don't understand why it's so hard. If they really don't think it's coeliac that's ok, but why the insistence of staying on gluten. They did do bloods again but he hadn't got those results yet. If they're ruling out coeliac but not looking at anything else but telling us to keep eating gluten why? Sorry I am just so confused and upset and had a plan to get my little boy off gluten and hopefully feeling better whatever the biopsy said and now I don't know what to do. He has shown some improvement but still sick and out of sorts. It seems that at the moment he is breaking down. A nose infection and inflamed ear is the latest after hives, mouth ulcers and vomiting with severe stomach pain for the last 8 weeks. Not to mention being tired and lethargic and complaining of joint pain. And his eczema is making s comeback. What would you do?

If it were my child, I'd keep him off of gluten and dairy as recommended by the dietician, especially since he's not well and this is possibly celiac.  It won't hurt him to be off of gluten and he may even improve, but if this is celiac disease or gluten intolerance, he will not improve on the gluten.  Right now your goal is for him to be well as soon as possible. I personally would wait until your son is healthy and recovered to even consider reintroducing gluten for a challenge.

There is nothing worse then not having clear answers. I would encourage you to be persistent. Eight weeks is not typical for a "bug." Follow your gut, if you are getting the cold shoulder see another doctor/doctors.  Get and keep copies of all test results as part of your son's history to help new consults avoid retesting and to help determine the next steps in his care.

Have you seen an allergist...?

 

Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

Thanks desirun. I have takenhim off gluten and he has improved out of sight. Only times he hasbeen sick since was when he ate something with gluten. His 14 yr old brother has just been diagnosed with type 1 diabetes and now coeliac screen has come back positive for him as well. Ttg was 745. normal is anything under 20. 

Waiting on gene test for him before scheduling biopsy. Makes it more likely that my younger son does have coeliac now I think. Will also be getting my daughter tested asap. 

ravenwoodglass Mentor
ravenwoodglass
Posted
4 hours ago, Lindsey1978 said:

 

Waiting on gene test for him before scheduling biopsy. Makes it more likely that my younger son does have coeliac now I think. Will also be getting my daughter tested asap. 

With his bloods coming back that high there is no chance he is not celiac.  The gene test is not diagnostic. There are rare cases of celiacs that don't have one of the two most common genes.  You may want to go ahead and get the biopsy done if you are choosing to do one. Some doctors will diagnose based on relief of symptoms and decrease in antibodies after the diet has been strictly followed.  Do keep in mind that intestinal damage can be patchy and be missed. He will need the diet even if the biopsy is negative.  Do keep him on gluten until the biopsy is done then take him gluten free. You don't have to wait on the results. Good to hear that you are planning on testing your daughter and don't forget testing on yourself and their father if it hasn't already been done.

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Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......

ravenwoodglass Mentor
ravenwoodglass
Posted
50 minutes ago, Lindsey1978 said:

His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......

Has he had any of the other celiac blood screening tests?  While another AI disease can cause a false positive those false positives are not that high. I am so sorry he is having to deal with both but the gluten free diet may help him keep his diabetes under better control.

Jmg Mentor
Jmg
Posted
51 minutes ago, Lindsey1978 said:

His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......

 

It is tough news and it's certainly not fair. 

Just maybe there may be some positive news coming for him however if he reacts well to the gluten-free diet. It could be he has improvements in his diabetes for instance.  

The diet is a pain in the xxxx but it does get easier over time and the choice of safe foods continues to expand. 

Wishing you and him the best of luck...

Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

He had the dpg igg as well. That came back at 50, normal is under 20.   It's the waiting that is hard and the reluctance of Drs to diagnose. His diabetes educator has already said they won't pay attention to those results for 3 months and then they'll test again. If they're still high they will look at the next steps. Gp seems a bit more ready to proceed now so hopefully he will get the referral sorted so we can have a definite answer before too long. 

Jmg Mentor
Jmg
Posted

I can understand doctors being cautious and wanting certainty before diagnosing a youngster with a lifelong condition that will limit their already limited dietary choices. Even so, his figures seem to make a very strong case and I wonder what their rationale is for waiting 3 months? That seems to be time that could be better spent getting him healthier on a gluten-free diet. I wonder if you can ask them what clinical advantages the delay will bring? Either it could speed the process along, or at least you'd get a better understanding of why they advocate a delay? 

ravenwoodglass Mentor
ravenwoodglass
Posted
50 minutes ago, Jmg said:

I can understand doctors being cautious and wanting certainty before diagnosing a youngster with a lifelong condition that will limit their already limited dietary choices. Even so, his figures seem to make a very strong case and I wonder what their rationale is for waiting 3 months? That seems to be time that could be better spent getting him healthier on a gluten-free diet. I wonder if you can ask them what clinical advantages the delay will bring? Either it could speed the process along, or at least you'd get a better understanding of why they advocate a delay? 

His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded.  Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months.  Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.

Victoria1234 Experienced
Victoria1234
Posted
On 6/21/2017 at 8:05 AM, Lindsey1978 said:

My 9 yr old has been sick for about 8 weeks now with various symptoms

That doctor is delaying unnecessarily! If he's been sick for 2 months already, another 3 months is cruel and unusual.

Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway?

Why is this disease so confusing for the medical world? 

Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi. 

It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it. 

Makes me so infuriated I just laugh about how I already seem to know more. 

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