Is Biopsy necessary with extremely high blood work???

[Clairet3]

Hello All, 

my 4 year old recently tested positive on the celiac blood test. His numbers were off the charts.. below are his test results. 

Transglutaminase Iga: 405

emdomysial Iga: positive 1:8

Gliadian Igg: 89

Iga serum 142 

from what I have read, with test results this high you can diagnose celiac without doing the biopsy. But the GI doctor is trying to push us to do it to see the extent of the inflammation even though the treatment (stop eating gluten) would be no different if it were an early or advanced stage. I don’t want to put him through unnecessary trauma and have to feed him gluten again.
has anyone had numbers this high and had a negative biopsy for celiac? The dr said it would be highly unlikely he doesn’t have celiac so not sure why she is pushing so hard. He only has minor physical symptoms like constipation and trouble sleeping. The reason we got him tested is due to his extreme behavior issues, anxiety and sensory processing disorder. I’m torn on what to do..

[trents]

No, it is not necessary when the antibody tests numbers are strongly positive. The tTG-IGA test is very specific for celiac disease.

There is some argument to be made for going through with the endoscopy/biopsy in that it would provide a baseline for gauging healing of the small bowel down the road after embarking on a gluten-free diet. But that would require another endoscopy/biopsy. If you want to gauge healing after going gluten-free you can also have the antibody test repeated. If I were in your situation I would forego the endoscopy/biopsy and start the gluten-free diet effort to see how your son responds to it. But beware, there is a real learning curve in getting to the point where you are truly eating gluten-free. Gluten is so ubiquitous in the processed food supply. And it would definitely be much more likely to be successful if the whole family were to go gluten free so as to avoid accidents and cross contamination. And eating out is to be avoided if at all possible because you have little control over cross contamination in restaurant environments. 

By the way, you as the parents and all you children should be tested. One recent and large study done by the Mayo Clinic revealed that 44% of those who are relatives of those with celiac disease had celiac disease themselves. It often produces few symptom in the early stages and is called "silent" celiac disease in these situations where there are little to none GI manifestations. Other studies in the past have produced about a 10% chance of first degree relatives having celiac disease so take that for what it is worth.

[knitty kitty]

@Clairet3,

Welcome to the forum!

How long has your son been off gluten???

I'm on the fence about having a small child undergo an endoscopy.  Numbers being so high don't correspond necessarily to the amount of damage in the small intestine, yet having a baseline is a valuable asset for future reference in reference to healing time and nutritional absorption ability.   

Damage to the small intestine as occurs in Celiac Disease can interfere with absorption of many vitamins (especially the B Complex vitamins and Vitamin A E, K and D) and minerals (iron, magnesium, potassium, and zinc).  Many behavioral problems are associated with deficiencies in some of the eight B vitamins as well as Vitamin E and D.  

 

Here are some helpful articles....

"Narrative Review: Nutrient Deficiencies in Adults and Children with Treated and Untreated Celiac Disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071237/

And...

Nutritional Deficiencies in Children with Celiac Disease Resulting from a Gluten-Free Diet: A Systematic Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6683263/

I agree with @trents both about having the whole family tested for Celiac and the whole household going gluten free.  No eating out (that's contamination roulette).  And talk to a Celiac aware nutritionist or dietitian about a nutritionally dense diet like the AutoImmune Protocol diet while healing (because Dairy can cause continuing damage). (Some Celiacs react to corn, soy and even Oats.)  

A child as young as your son is less likely to remember the procedure, but more likely to remember parental anxiety over having it done.  If you are anxious about it, you may transfer that anxiety to your child, so it's important you are comfortable with your decision.

Best wishes on your journey! 

 

 

 

[trents]

As an adult I have had three endoscopies done and none were painful in anyway. The hospital used conscious sedation. I'm not sure if they do that with kids.

[Clairet3]

1 hour ago, trents said:

No, it is not necessary when the antibody tests numbers are strongly positive. The tTG-IGA test is very specific for celiac disease.

There is some argument to be made for going through with the endoscopy/biopsy in that it would provide a baseline for gauging healing of the small bowel down the road after embarking on a gluten-free diet. But that would require another endoscopy/biopsy. If you want to gauge healing after going gluten-free you can also have the antibody test repeated. If I were in your situation I would forego the endoscopy/biopsy and start the gluten-free diet effort to see how your son responds to it. But beware, there is a real learning curve in getting to the point where you are truly eating gluten-free. Gluten is so ubiquitous in the processed food supply. And it would definitely be much more likely to be successful if the whole family were to go gluten free so as to avoid accidents and cross contamination. And eating out is to be avoided if at all possible because you have little control over cross contamination in restaurant environments. 

By the way, you as the parents and all you children should be tested. One recent and large study done by the Mayo Clinic revealed that 44% of those who are relatives of those with celiac disease had celiac disease themselves. It often produces few symptom in the early stages and is called "silent" celiac disease in these situations where there are little to none GI manifestations. Other studies in the past have produced about a 10% chance of first degree relatives having celiac disease so take that for what it is worth.

Hi Trents. Thanks for the info. Yes the whole family is planning to go gluten free. My son has been off gluten for one week so far. No changes yet. In fact his symptoms are getting worse which may be detox from gluten? My daughter and I were tested for celiacs a few days ago  and came back negative. Could these high numbers mean something else besides celiac? Could there be an error in the results? Maybe I should have them repeat the test. So far I haven’t seen anyone report a number as high as 405 for tranglutamise for a child. 
My nephew just got his celiac results back today and they were negative as well.

[Clairet3]

19 minutes ago, knitty kitty said:

@Clairet3,

Welcome to the forum!

How long has your son been off gluten???

I'm on the fence about having a small child undergo an endoscopy.  Numbers being so high don't correspond necessarily to the amount of damage in the small intestine, yet having a baseline is a valuable asset for future reference in reference to healing time and nutritional absorption ability.   

Damage to the small intestine as occurs in Celiac Disease can interfere with absorption of many vitamins (especially the B Complex vitamins and Vitamin A E, K and D) and minerals (iron, magnesium, potassium, and zinc).  Many behavioral problems are associated with deficiencies in some of the eight B vitamins as well as Vitamin E and D.  

 

Here are some helpful articles....

"Narrative Review: Nutrient Deficiencies in Adults and Children with Treated and Untreated Celiac Disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071237/

And...

Nutritional Deficiencies in Children with Celiac Disease Resulting from a Gluten-Free Diet: A Systematic Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6683263/

I agree with @trents both about having the whole family tested for Celiac and the whole household going gluten free.  No eating out (that's contamination roulette).  And talk to a Celiac aware nutritionist or dietitian about a nutritionally dense diet like the AutoImmune Protocol diet while healing (because Dairy can cause continuing damage). (Some Celiacs react to corn, soy and even Oats.)  

A child as young as your son is less likely to remember the procedure, but more likely to remember parental anxiety over having it done.  If you are anxious about it, you may transfer that anxiety to your child, so it's important you are comfortable with your decision.

Best wishes on your journey! 

 

 

 

Thanks for your relpy! My son has only been off gluten for 7 days. He seems to be doing worse which may be detox symptoms. I’m not so worried about the actual procedure as I am Re-introducing gluten and having his symptoms get worse than having to restart the healing process. Plus we have talked so much about how he will not be eating gluten anymore and with his school and then to have to backtrack and explain that he needs to eat it again for a procedure might be upsetting to him. He is also seeing an allergist next week to test for other possible allergies. I’m really hopeful that his dietary changes will help his behavior issues because we have done years of expensive behavioral therapies and OT and nothing seems to be working

[trents]

There is research that indicates the protein casein in dairy produces villi blunting and antibodies like gluten does for some people.

If your son does not show improvement within a month I would look at some other cause. I'm not saying that there can be complete healing of the villi in a month but there should be improvement of symptoms.

[knitty kitty]

@Clairet3,

You may want to call the doctor's office and ask how quickly your son could be scheduled for having the procedure done.  Being put on the doctor's cancellation list is another option.  Emphasize the severity of gluten reintroduction symptoms if he is allowed to wait weeks or months.  

A minimal amount of gluten (two slices of wheat bread a day) would be necessary for your son to consume until the procedure. 

You could frame it by telling your son he's allowed to eat his favorite gluten goodies as a "good-bye to gluten forever" test. Serve them at home at night so you are in control of the amount and hopefully symptoms are minimized.  Have him practice gluten free at school.

Explain the doctor wants to make sure all the gluten (from those gluten favorites) is out of his tummy, so your son is going to take a nap at the doctor's office so the doctor can take pictures while your son is laying really still during his nap.  Don't over complicate the explanation.  You "be chill" about it, so will he.  

In the meantime....

Refrain from serving him processed gluten free facsimile foods (ie....gluten free bread, gluten free cookies, gluten free pasta, etc.)  These foods are not enriched with vitamins and minerals like their gluten containing counterparts are required by law to be.  The gluten free facsimile foods are nutritionally void of the vitamins needed to digest them and turn them into energy (like thiamine, niacin, riboflavin, cobalamine, and folate).  

Many gluten free facsimile foods are made with corn which can be mistaken for gluten by the body in some people.  Avoid these.

The gluten free facsimile foods made with potatoes or potato flour can cause leaky gut syndrome.  (Potatoes, tomatoes, eggplant and peppers are nightshades which promote leaky gut syndrome.) Leave these out of his diet, too.   

Cut out dairy products.  Like @trents said, dairy can cause continuing inflammation and damage.  

Did you and your daughter get a DNA test for the Celiac genes?  You can have a Celiac gene, but it not may not be activated.  The Celiac genes often get activated after an illness.

I wish you all the best.  Do keep asking questions.  And do keep us posted!

 

 

 

 

Edited October 8, 2021 by knitty kitty
Add more information

[yuluyouyue]

Hello, on this and other forums I saw tTg of even 2000 reported for kids. The good news is that these numbers go down really quickly for them. I have seen it reported that they normalised within months even.

[yuluyouyue]

Also, please see what works for your son. Everyone is different, so you don't need to automatically drop all the gluten free food, nightshades, corn, etc. Plenty of celiacs are thriving with that included in their diet too. As always key is in moderation and variety. But you will see what works and what doesnt. I don't know if it is an American thing to have all the gluten food reinforced with nutrients, which then makes gluten free food devoid of them. Could be because so much processed food is eaten there? Don't people eat whole foods? The way I see it, if you eat plenty of whole foods you will get all the nutrients you need, so occasional gluten free pasta or bread or cookie will not undo that. 

[knitty kitty]

15 minutes ago, yuluyouyue said:

 Could be because so much processed food is eaten there? Don't people eat whole foods? The way I see it, if you eat plenty of whole foods you will get all the nutrients you need, so occasional gluten free pasta or bread or cookie will not undo that. 

The AutoImmune Protocol diet (AIP diet) advocates for cutting the highly processed foods from the diet while the intestines are healing. 

The AIP diet suggests fresh meat and fresh veggies and some fresh fruits.  No dairy, no eggs, no nuts, no seeds, no grains, no legumes.  All these can be hard on a tender healing digestive tract.  

Then gradually these other foods are added into the diet, one by one, over several weeks and any reaction is noted.  A journal for this is necessary.  I call mine the food/mood/poo'd journal.😸

Unfortunately, fast food and processed foods seem to be the basis of the Standard American Diet (SAD).  A majority of people seem too busy to cook with whole foods (it can be time consuming).  As the SAD diet seems to be adopted by more and more international countries, the health problems (obesity, etc.) that plague the U.S. are cropping up in other countries as well.

As for fortification of wheat products.... I found some interesting reading for all of us....

In Europe....

"Fortification with folic acid could help prevent severe birth defects in at least 1000 pregnancies per year"

https://ec.europa.eu/jrc/en/news/fortification-folic-acid-could-help-prevent-severe-birth-defects-least-1000-pregnancies-year

And....

https://www.ffinetwork.org/europe

Quoting...

"About 4500 pregnancies in the European Union are affected by a birth defect of the brain and spine every year, and an estimated 72% of the pregnancies are terminated."

And...in the U.S....

"Each year, about 1,427 babies are born with spina bifida, or 1 in every 2,758 births"

"Overall, a 28% reduction in prevalence was observed for anencephaly (a birth defect of the brain) and spina bifida." 

https://www.cdc.gov/ncbddd/birthdefectscount/data.html

 

[yuluyouyue]

Interesting read, thank you. I had no idea about this. It seems the EU is plagued, as it often is, by inability to reach a consensus among all the member states.

[yuluyouyue]

1 hour ago, knitty kitty said:

The AutoImmune Protocol diet (AIP diet) advocates for cutting the highly processed foods from the diet while the intestines are healing. 

The AIP diet suggests fresh meat and fresh veggies and some fresh fruits.  No dairy, no eggs, no nuts, no seeds, no grains, no legumes.  All these can be hard on a tender healing digestive tract.  

Then gradually these other foods are added into the diet, one by one, over several weeks and any reaction is noted.  A journal for this is necessary.  I call mine the food/mood/poo'd journal.😸

Unfortunately, fast food and processed foods seem to be the basis of the Standard American Diet (SAD).  A majority of people seem too busy to cook with whole foods (it can be time consuming).  As the SAD diet seems to be adopted by more and more international countries, the health problems (obesity, etc.) that plague the U.S. are cropping up in other countries as well.

As for fortification of wheat products.... I found some interesting reading for all of us....

In Europe....

"Fortification with folic acid could help prevent severe birth defects in at least 1000 pregnancies per year"

https://ec.europa.eu/jrc/en/news/fortification-folic-acid-could-help-prevent-severe-birth-defects-least-1000-pregnancies-year

And....

https://www.ffinetwork.org/europe

Quoting...

"About 4500 pregnancies in the European Union are affected by a birth defect of the brain and spine every year, and an estimated 72% of the pregnancies are terminated."

And...in the U.S....

"Each year, about 1,427 babies are born with spina bifida, or 1 in every 2,758 births"

"Overall, a 28% reduction in prevalence was observed for anencephaly (a birth defect of the brain) and spina bifida." 

https://www.cdc.gov/ncbddd/birthdefectscount/data.html

 

And very true that junk food is becoming the norm everywhere. It is just that I personally never thought about the isuse of processed food and fortification or never really heardy about it till I came to this forum. I was raised in a rather poor country where home cooking was the norm and we had very little processed food, save for pasta and bread at our disposal. So even though now processed food is becoming more the norm, for me it is still strange to eat large amounts of it. As in, if I eat some potato chips,  I will feel guilty about it for a week and try to make up for it by eating extra healthy. And I have never been to the US, and what I see on tv is probably not true, but it always baffles me to see how many different meals are premade. It never occurred to me that gravies pies mashed potato etc can be boguht ready and just heated. That is why I didn't  see the difference in having fortified vs not fortified processed food, if one didnt have a lot if it in the first place. I do notice that in my country there are also more and more ready meals options. And I know cooking is time consuming, but if it is a priority, one finds a way. My parents both worked when I was growings up but every day there was a cooked meal . Sometimes they made it the night before for the next day or made large portions and froze it. We also had a simple salad with every meal. Cabbage, lettuce, potato, egg, red beet, legumes etc with just soMe onion vinegar and oil, Which is also simple to make. (Salad dressings are still not common.) I heard about grocery desserts in the US and it is really hard to imagine. 

[knitty kitty]

2 hours ago, yuluyouyue said:

And very true that junk food is becoming the norm everywhere. It is just that I personally never thought about the isuse of processed food and fortification or never really heardy about it till I came to this forum. I was raised in a rather poor country where home cooking was the norm and we had very little processed food, save for pasta and bread at our disposal. So even though now processed food is becoming more the norm, for me it is still strange to eat large amounts of it. As in, if I eat some potato chips,  I will feel guilty about it for a week and try to make up for it by eating extra healthy. And I have never been to the US, and what I see on tv is probably not true, but it always baffles me to see how many different meals are premade. It never occurred to me that gravies pies mashed potato etc can be boguht ready and just heated. That is why I didn't  see the difference in having fortified vs not fortified processed food, if one didnt have a lot if it in the first place. I do notice that in my country there are also more and more ready meals options. And I know cooking is time consuming, but if it is a priority, one finds a way. My parents both worked when I was growings up but every day there was a cooked meal . Sometimes they made it the night before for the next day or made large portions and froze it. We also had a simple salad with every meal. Cabbage, lettuce, potato, egg, red beet, legumes etc with just soMe onion vinegar and oil, Which is also simple to make. (Salad dressings are still not common.) I heard about grocery desserts in the US and it is really hard to imagine. 

We're really getting off track here,  @yuluyouyue.  Perhaps we should start another post with this topic.  

Grocery deserts are places where fresh veggies and fruits are not available at local stores.  In some big cities, convenience stores selling processed (mostly junk food like chips and sodas) are abundant, but proper grocery stores selling fresh veggies, fruit and meat are few and far between.  Transportation to and from these grocery stores (with bulky bags of groceries on the trip home) is difficult for those living in these neighborhoods.  It is very sad.  

Thanks for sharing about food in your country!  Very enlightening!

Edited October 8, 2021 by knitty kitty
Add more information

[greenbeanie]

Hello, Clairet3. Looks like you have lots of useful advice already, but I just wanted to add that my daughter was diagnosed at age 4 with a tTG about 16x the upper limit of normal (and high positives on all other tests too), and she also had sensory processing disorder prior to her celiac diagnosis. The therapy for sensory processing disorder did not help at all. However, within six months of being gluten free she had tremendous improvements, especially in what had been extreme sound sensitivity. She had stopped the therapy before that, so it was just healing from celiac that helped. It wasn’t immediate and her neurological symptoms took much longer to go away than her gastrointestinal ones. So hang in there - it may just take a while!

[Scott Adams]

There articles may be helpful:

 

 

[Clairet3]

2 hours ago, Scott Adams said:

There articles may be helpful:

 

 

Great articles. Thanks for sharing!

[Clairet3]

6 hours ago, greenbeanie said:

Hello, Clairet3. Looks like you have lots of useful advice already, but I just wanted to add that my daughter was diagnosed at age 4 with a tTG about 16x the upper limit of normal (and high positives on all other tests too), and she also had sensory processing disorder prior to her celiac diagnosis. The therapy for sensory processing disorder did not help at all. However, within six months of being gluten free she had tremendous improvements, especially in what had been extreme sound sensitivity. She had stopped the therapy before that, so it was just healing from celiac that helped. It wasn’t immediate and her neurological symptoms took much longer to go away than her gastrointestinal ones. So hang in there - it may just take a while!

Hi Greenbeanie! Thank for your for sharing your story with me. That’s great to know she made Improvements after going gluten free and gives me some hope my son can improve as well

[Clairet3]

12 hours ago, yuluyouyue said:

Also, please see what works for your son. Everyone is different, so you don't need to automatically drop all the gluten free food, nightshades, corn, etc. Plenty of celiacs are thriving with that included in their diet too. As always key is in moderation and variety. But you will see what works and what doesnt. I don't know if it is an American thing to have all the gluten food reinforced with nutrients, which then makes gluten free food devoid of them. Could be because so much processed food is eaten there? Don't people eat whole foods? The way I see it, if you eat plenty of whole foods you will get all the nutrients you need, so occasional gluten free pasta or bread or cookie will not undo that. 

Thanks for your reply. Yes I’ll probably see how it goes for a few months with no gluten before I try to cut anything else. Luckily my son already ate pretty healthy and enjoys fruits, veggies, meats, etc. Its mostly a struggle to replace things he had for lunch at school like finding a gluten free bread he likes for sandwiches. In general I try to stay away from highly processed snacks so It hasn’t been a huge issue in that area either. And the pizza place next to our house has a great gluten free pizza crust so he is very satisfied with that. Haha 

[Wheatwacked]

Son was diagnosed, biopsy, in1976 at six months old. At the time the doctor said my son has ADD and predicted that in kindergarden the teachers will ask us to put him on Ritalin. He started eating gluten again (we did not know better) at 5 yrs. Sure enough a few months after starting kindergarden we got a request from the school for a meeting. The school representative explained there were attention issues and asked us to see a doctor about Ritalin. He took Ritalin until he finished high school.