Biopsy or not biopsy?

[wangle99]

DS is 6 and intolerant (or whatever it is) to wheat and gluten and recently dairy.

The first paed we saw when he was 3 was convinced he was going to be coeliac and was gobsmacked when the tests came back negative (bloods but not sure which ones), he has been tested since then and again come back neg however his responses are still extreme and now dairy is added to the mix.

We have finally been referred to a paed gastro and we are seeing her in a week and a half, the dietician we see (who is fab) and suggested a biopsy may be the only answer to find out once and for all if something is going on in there.

I'm a bit dubious as it may well come back negative however if there is a small chance it may show up something and will obviously put the coeliac thing to bed once and for all - would you do it?

I do realise he will have to go back on wheat/gluten (substantial amount) per day to before biopsy as he has done before all blood testing previously.

Thanks

coeliac is a very serious condition if left for some time undiagnosed.....so i would carefully consider it.

adding new foods to a intolerant person is common, as damaged gut by one main food intolerance , can result in less food being tolerated generally.

are happy with diagnosis of intolerance, rather than allergy?

if you are a pead gastro should be the right person to see......

so good luck.

I'm with twopeople. I have bowel problems with blood in stools, bloating, chronic aneamia etc. I had biopsies to confiem cealiac disease that came back negative. However I can't eat wheat as it makes me really bad.

If biopsy comes back negative will you start giving him wheat/gluten? If the answers no then IMO you should consider not doing it.

The only benefit I know of by having the diagnoses of cealiacs is that some foods can be got on perscription.
Best of luck

Thank you for your replies. We have issues with DS school as intolerance is almost seen as faddy whereas coeliac is treated far more seriously. The issue of prescriptions also.

We wouldn't start giving him wheat/gluten under any circumstances. Also wondering if it is coeliac the risk to other family members. Both DH and FIL have digestive issues.

I will take the advice of the paed gastro but just wondered irl what people would do.

Yes school may be an issue. My ds has allergic reactions but his allergy test came back clear. Pead cons has said its not tomato but something in tomato products - Its probably a preservative. - and without actual diagnosis school won't allow him to have their lunch etc.

Personally, I would go for the biopsy so that you know one way or another. I think with a child it's important to know and makes accessing help easier if they are coeliac - plus as a rebellious teenager they could say 'oh, don't know that I am coeliac, eat what I like' and if they were, could do a lot of harm.

Hi I really think you should go for the biopsy. My DD is a coeliac and had a biopsy at 15 months. It will give you and your DS a proper diagnoses one way or another. If he has coeliac disease your DS will get food items, bread, biscuits, pasta etc on presciption, gluten free food is very expensive. He will also be allocated a peadatric dietitian and will get regular height and weight checks. If he isn't you may be cutting out a huge and important food group that you dont need to. I know how concern you are but beleive me it is for the best. My DD has never looked backed and is a very health 9 year old, who can explain and control her own diet. You could contact Coeliac UK helpine 0845 3052060.

When my DD was about 5, over a peiod of time, she became very pale, tired, thin, had stomach pains and leg pain. When I noticed how bad she looked, the doctor ran tests, and she got positive for coeliac antibodies. The doctor told em to put her on a gluten free diet straight away. three months laterm when we got her referrral to Great Ormond Street the doctor there told us she would need gluten in her diet for 3-6 months. at this time, one biscuit had her crying in pain all night. I refused to do this, and had a row with the doctor. She called me unreasonable, and said that if she had a child, she would inflict this pain on her for all those months, for the benefit of the test, and I wouldnt be getting prescription food without it! She then turned to my dp and told him to take me home, talk me into it, and she would call in a day or two! I went spare! DD DIDNT have the test, and six years down the line, we have managed perfectly well without a free prescription. Gluten free is easy once you get the hang of it. DD and I have discussed the issue, and she is happy with the plan that if she feels the need to eat wheat and gluten when she is older, she will have the test first. We have a peadiatrician, and can see a dietician when we like, and recently, our new doctor has issued us with a prescription without the biopsy. Obviously, your son has other issues in the mix as well, but if you can work out his allergies without this test, and he is better without gluten anyway, why put him through it?! Coeliac is hereditary, so others could be susceptible.
As to the school, I would go mad if they didnt take my childs health issues seriously, and cause a large fuss, but is this a good reason to put a child through an invasive medical procedure?