Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Biopsy/scope Showed Damage But Not Celiac?

brendab

Recommended Posts

brendab Contributor
brendab
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


fattycat Rookie
fattycat
Posted

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

GFinDC Veteran
GFinDC
Posted

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 Contributor
brendab
Posted
  • Author

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 Contributor
brendab
Posted
  • Author

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 Enthusiast
mommida
Posted

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

cassP Contributor
cassP
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


brendab Contributor
brendab
Posted
  • Author

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 Rookie
fattycat
Posted

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 Contributor
brendab
Posted
  • Author

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 Mentor
ravenwoodglass
Posted

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 Contributor
brendab
Posted
  • Author

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. Community Regular
T.H.
Posted

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. :unsure: Was it a negative blood test, or just inflammation and no blunted villi in the intestine? What was the damage exactly?

brendab Contributor
brendab
Posted
  • Author

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. :unsure: 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 Rising Star
Jestgar
Posted

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 Contributor
brendab
Posted
  • Author

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 Rising Star
Roda
Posted

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.

  • 2 weeks later...
brendab Contributor
brendab
Posted
  • Author

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. :unsure: 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?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,538
    • Most Online (within 30 mins)
      7,748
    Josiemc
    Newest Member
    Josiemc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.