What Would You Do?

[beebs]

Hi everyone, 

 

I need to pick the brains of the people on here who know heaps about coeliac. 

 

A bit of background information, I am coelaic and also have EOE, my mother is Coeliac and my grandfather developed bowel cancer in his 40s after a lifetime of sick bellies. 

 

Two of my sons have been seeing a GI for almost their entire lives, one had a scope at 18 months and came back with Marsh 2 changes, Gastritis and ulcers in his esophagus - he had severe reflux and was in lots of pain for about two years of his life. At times lactose intolerant but other times not. 

 

His stools have always been vile. 

 

Anyway fast forward to now, he is almost 5 and started complaining of belly pains all the time, one time so bad he couldn't stand up and was screaming and I ended up taking him to ER. Every day, multiple times a day. 

 

I started a gluten free trial with him (remember - we've been through multitudes of blood tests and an an Endo and still no diag). So far no belly pains and his stools have improved.

 

So my question to you guys is this? Continue with the gluten free diet - or try and seek a proper diagnosis even though we've had no luck for 5 years?

[nvsmom]

I would personally keep him gluten-free and feeling well. Two of my kids had obvious but nt too severe celiac symptoms but they tested negative. I have celiac disease, as do other family members, so I made them gluten-free. I tell everyone they are celiacs and treat them as such. They are feeling better but do not have that official diagnosis.... It makes me thankful that celiac disease does not require medication to treat it otherwise they would still have health problems.

Go gluten-free now and then retest when e is older if he wants to eat gluten, and then keep retesting every couple of years.

Good luck!

[LauraTX]

With Marsh 2 changes on his endoscopy, it is possible they also ran bloodwork but missed the diagnosis of Celiac.  If there is another GI doctor you can take him to, I would request copies of his chart from them and keep one for when he is older, and let the new doctor review what testing has already been done.  But overall, he does seem to need to be gluten-free with those symptoms.

[beebs]

He is one of the best GIs in the country, so I am reluctant to leave him.  But they redid his bloods recently before he was gluten free and they showed up negative again. Which really, my bloods have always shown up negative and I am deffo coeliac - so I don't really trust the bloods anyway. 

 

What does Marsh 2 changes mean in terms of coeliac? Can it mean other things too is that why they can't diagnose unless it is 3 or 4?

[nvsmom]

Page 8-9 of this report discusses the Marsh classification.  Marsh 2 is often considered to be early celiac but some doctors won't call it celiac disease until the celiac has done some real damage to himself, as seen in Marsh 3... It's sort of like not declaring that someone has a serious peanut allergery until after they have eaten enough peanuts to become seriously ill - it is not an ideal system.    Marsh 2 means there is damage and the intestines are not normal. Open Original Shared Link

 

Here is more info: Open Original Shared Link

 

Marsh 3 can mean other things beyond celiac disease too... To be honest, I'm not sure why doctors love doing the biopsy so much, except in situations where celiac disease is suspected but the blood tests are negative or inconclusive. 

 

If the doctors won't diagnose him, go gluten-free anyways. It can't hurt him.  It is a hassle, especially when they eat away from home, but your other option is to not try, and that could lead to continued poor health. They could both go gluten-free together so no child feels extra hard done by... Plus starting them gluten-free at a young age is much much easier to do than putting it off until they are older and have more control over what they eat.

 

Keep a food and symptom journal for when he goes gluten-free, and that way you can see changes for yourself, and you'll also have proof to show the GI at a later date.

[beebs]

Thansk for your responses, and thanks nvsmom for the info on the marsh scores. Well, I think we are on the right track, the kids have only been gluten free for a week, went to a cafe today and we let DS have a burger, didn't even think about gluten to be honest. I forgot all about it. Within an hour he was white as a sheet and complaining of belly pains which led to vomiting. 

 

It makes me so annoyed that they basically want your child to be eating gluten for months on a challenge, getting sick all the time to have a biopsy that may not come back positive anyway when it is clearly gluten. He gets sick from gluten and has done his whole life and no one will call it because his biopsy was marsh 2 and not marsh 3 gah! 

[nvsmom]

Yeah... It's a dangerous way to test for a disease. I can't think of many other tests where you have to make yourself sicker in order to get a diagnosis. Imagine if they did that with cancer, heart disease or diabetes.  

 

If he can't handle the challenge, you can always skip the testing and go gluten-free.  I did that with my boys and their tests were much more negative than your son's.

 

Best wishes to you all.