Biopsy/scope Showed Damage But Not Celiac?

[brendab]

Ok, I have asked a similar question in the parenting forum because this is for my 2 year old boy but he had testing done a few months ago and it's nagging me to death! I am wondering if food allergies also cause intestinal damage or is this a gluten damage thing? I know he reacts to gluten intestinally (is that a word?) but he's not diagnosed celiac. I don't understand. Help anybody?

[fattycat]

What reason did the doctor give that it wasnt Celiac disease?

[GFinDC]

There is a thing called casein sensitive enteropathy that can cause villi damage. Also parasites can cause it from what I read. I think both of those are even rarer than celiac in the USA at least. If he reacts well to not eating gluten though that is a pretty darn good indicator that gluten is a problem. Unfortunately many celiacs have a problem with dairy also, or rather lactose, the sugar in dairy. The enzyme that digests lactose is made by the villi that celiac destroys. So villi damage = lactose intolerance. So a good way to go is to get the person off dairy and gluten at first. Some of us can then regrow the villi and begin eating dairy again after some time has passed. Could be several months or more for that. Do not replace dairy with soy milk substitutes though. There was research not long ago that found children fed soy milk after reacting to dairy tended to develop additional food allergies. There are hemp and almond and rice milks available, but check the ingredients for added vitamins.

[brendab]

What reason did the doctor give that it wasnt Celiac disease?

She said is was food allergy related, not gluten. But isn't gluten a food too?

[brendab]

There is a thing called casein sensitive enteropathy that can cause villi damage. Also parasites can cause it from what I read. I think both of those are even rarer than celiac in the USA at least. If he reacts well to not eating gluten though that is a pretty darn good indicator that gluten is a problem. Unfortunately many celiacs have a problem with dairy also, or rather lactose, the sugar in dairy. The enzyme that digests lactose is made by the villi that celiac destroys. So villi damage = lactose intolerance. So a good way to go is to get the person off dairy and gluten at first. Some of us can then regrow the villi and begin eating dairy again after some time has passed. Could be several months or more for that. Do not replace dairy with soy milk substitutes though. There was research not long ago that found children fed soy milk after reacting to dairy tended to develop additional food allergies. There are hemp and almond and rice milks available, but check the ingredients for added vitamins.

He also cannot have dairy and when I weaned him at 13 months he started drinking coconut milk and then we switched to almond milk. He is 100% dairy free to this day. One of his tests were for parasites and that came up negative. He seems to not do well with soy and I am not hip on soy anyway so it's a non-issue.

Anyway, he's dairy, gluten and banana free but he still finds gluten from his siblings now and then which causes nasty issues GI wise.

[mommida]

Eosinophils cause damage that is not considered "Celiac" damage. Eosinophilic gastro disorders are considered food or airborne "triggered". (could be caused by gluten)

[cassP]

She said is was food allergy related, not gluten. But isn't gluten a food too?

its also possible to have both- a food allergy AND an intolerance. they involve seperate responses from the immune system- but one can have both

[brendab]

Eosinophils cause damage that is not considered "Celiac" damage. Eosinophilic gastro disorders are considered food or airborne "triggered". (could be caused by gluten)

I forgot about that, thanks for the reminder.

its also possible to have both- a food allergy AND an intolerance. they involve seperate responses from the immune system- but one can have both

Gotcha

[fattycat]

How much gluten was he having before the test? I believe repair can start resulting in results which appear to be damage but not enough for a diagnosis of Celiac

[brendab]

How much gluten was he having before the test? I believe repair can start resulting in results which appear to be damage but not enough for a diagnosis of Celiac

We had him off of gluten for the most part since he was 7 months old. He had a positive allergy patch test to wheat so I was keeping him wheat free and shopping for groceries, if it said gluten free I knew it was also wheat free so I just went that route but didn't focus on the gluten free part. He still was having issues now and then and it hit me that maybe it isn't the wheat but the gluten since I have issues with gluten so I tried another grain with gluten: barley. I used barley infant cereal and his first bowel movement was pitch black! He then had other movements that was marbled with blood, battleship grey to neon yellow and we've had unnatural green as well. This was all before it went back to normal. Oh and the smell! OH my gosh it was like vomit!

During the 2 month wait do the scope/biopsy he had to eat gluten and he didn't have such pronounced movements as that one but he was having other digestive symptoms, got dark circles under his eyes and my normally calm two year old (yes I said calm and two year old in the same sentence), became a two year old that most people see with "the terrible two's". Screaming, throwing himself on the floor in a fit, crying and occassionally waking at night with no explaination.

I'm wondering if the damage she was seeing was just the little bit he incured while eating gluten?

[ravenwoodglass]

During the 2 month wait do the scope/biopsy he had to eat gluten and he didn't have such pronounced movements as that one but he was having other digestive symptoms, got dark circles under his eyes and my normally calm two year old (yes I said calm and two year old in the same sentence), became a two year old that most people see with "the terrible two's". Screaming, throwing himself on the floor in a fit, crying and occassionally waking at night with no explaination.

I'm wondering if the damage she was seeing was just the little bit he incured while eating gluten?

IMHO yes it was when you take into consideration how he reacted to the challenge.

[brendab]

IMHO yes it was when you take into consideration how he reacted to the challenge.

Thank you for your opinion and thoughts, I just wish I had a diagnosis for sure.

[T.H.]

Thank you for your opinion and thoughts, I just wish I had a diagnosis for sure.

What exactly was the reason she gave for it not being Celiac Disease?

So far, if I understand what you were saying, everything you describe would lead to the opposite conclusion. Was it a negative blood test, or just inflammation and no blunted villi in the intestine? What was the damage exactly?

[brendab]

What exactly was the reason she gave for it not being Celiac Disease?

So far, if I understand what you were saying, everything you describe would lead to the opposite conclusion. Was it a negative blood test, or just inflammation and no blunted villi in the intestine? What was the damage exactly?

I just assumed she knew what she was talking about that it was not celiac since I know very little. He had a neg. blood test but I knew that was going to happen since we first purposefully introduced gluten only a few weeks prior to testing and the fact that most test neg. for it to begin with. She just said there was some damage due to food allergies. I assumed there was a difference. I just am still questioning because he wasn't on long enough to get a difinitive answer or enough damage done and he still has symptoms after exposure.

[Jestgar]

Thank you for your opinion and thoughts, I just wish I had a diagnosis for sure.

A diagnosis may involve making your child incredibly sick for several weeks.....

[brendab]

A diagnosis may involve making your child incredibly sick for several weeks.....

But that may cause irrepairable damage and that is what bugs me so much.

[Roda]

If for some reason they may still have his biopsy sample you could request another pathologist to review it and the report for a second opinion. Sometimes the pathologist may be inexperienced in reading the biopsy, the sample wasn't orientated correctly or your doctor does not know how to interperate the pathology report. I would request a copy of the pathology reoprt.

[brendab]

What exactly was the reason she gave for it not being Celiac Disease?

So far, if I understand what you were saying, everything you describe would lead to the opposite conclusion. Was it a negative blood test, or just inflammation and no blunted villi in the intestine? What was the damage exactly?

She said the blood test was negative (which I expected fully), inflamation and intestinal damage but not to the villi. I was about to post another update about going for a follow-up at the allergists office to see what foods we were missing that could be causing damage and the foods he tested positive for as a baby no longer exist; he grew out of them. Yay! So leaves the question of what is causing the damage?