Positive Ttg & Ema Bloodwork, Why Biospy?

[poobelly]

Should I put my little girl (just turned 6) thru a biopsy?

after much reading and her ped doc says YES and is sending me to a ped. gastro doc on tues.

and a family doc that says NO the blood work is enough put her on the diet and see if she improves in 6 months

(low iron, smaller structure, protruding belly, consipation was worse when younger and

stomach aches once in a while. No signs of rashes or vomiting.)

her tTg was >100

her EMA ws 1:640

Immunoglobulin A IGA 163

First of all I dont understand the numbers, i know they are positive but what is considered high

and does this tell me anything about the villi damage??? Stages???

Also do these numbers change after you have been on the diet?

Im not sure i fully understand the biospy with this type of blood results.

If there is villi damage is it reversed with the diet?

what else will the biopsy test for?

I know its not the most reliable test, any one know percentage as to how reliable?

I want to be prepared for this specialist.

Biopsy now, later never???

Thanks for any help for a worried mom. Sorry for so many questions.

Kelly

[Jestgar]

You'll hear a variety of opinions. In the end, the decision is yours.

The only thing new the biopsy might tell you is the degree of damage, but then again, maybe not. The damage may be patchy and the GI doc could miss it entirely.

If it is Celiac and nothing else, the villi will most likely heal with the diet. You can check for this by repeating the bloodwork in 6 months. If you find that the diet hasn't helped, and her bloodwork hasn't changed, you could then choose to biopsy to see if there is continuing damage.

[ravenwoodglass]

I agree with Jestgar and the family doctor. There are risks with any invasive procedure, they may not be great risks but they are there. I would do as was suggested and put her on the diet strictly for at least six months and then if there are still issues I would then consider the biopsy to look for other problems.

Do make sure with her positive bloods that you have all family members tested also.

The numbers should go down after she is on the diet for a bit as long as gluten isn't sneaking in somewhere. She should have her blood rechecked at about 6 months.

[poobelly]

since the biopsy shows the damage

Which of the blood test results correlate with the villi damage?

thanks for the input Kelly

[ShayFL]

Unfortunately it isnt so cut and dry. There is no number on the bloods that can correspond directly with damage. Some have high numbers and no damage on the biopsy. Some have low numbers and completely flattened villi.

You do need to ask yourself a question though. Since biopsy is GOLD STANDARD diagnosis, will you keep her on the diet for life if you do not get the biopsy? Let's say you do the gluten-free diet and she improves. She gets completely healthy. You have repeat blood work and all comes back NEG. Your doctor might say, maybe she isnt Celiac after all. Or you might second guess and think the same thing. Here is the problem. If she is Celiac (which her blood work indicates) and at some point you second guess and let her eat gluten again, then she will suffer an autoimmune response (even if no symptoms arise). T1 Diabetes, lymphoma, MS, Hashimoto's, etc. can all come from untreated Celiac. Many people arent Dx until they go to the doctor with one of these other related diseases. You dont always have GI symptoms with Celiac. And some reintroduce gluten after awhile only to get Dx again later in life when they have TONS of health issues.

I woman in my local Celiac support group was told she was Celiac as a toddler. At age 10 her Mom put her back on gluten, because she was SO healthy. By the time she was a Teenager she had T1 Diabetes. In her 20's she was Dx MS. And in her 30's she had her gallbladder removed and her thyroid removed due to Hashimotos. In her 40's she was FINALLY Dx Celiac (again - it doesnt go away). Now she has been gluten-free for over 2 years and has healed some but the diabetes is permanent and she cannot feel her hands or her feet.

Extreme case. Not really. If you have Celiac you MUST eat gluten-free to avoid these consequences.

So the question you must ask yourself is this: Am I willing to keep her gluten-free for life and stand firm on the fact that she DOES have Celiac without the biopsy?

If you answer is yes, then go with your instincts. No biopsy.

[LizMonte]

Hi, I just joined this forum. I was recently diagnosed with gluten sensitivity/celiac with a genetic test. I have MS, although I'm not aware of any digestive issues... yet. The same lab that does the genetic testing has also developed a non-invasive stool analysis that they say can tell you even more about the status of your disease than a biopsy can. They say the immune reaction from gluten takes place primarily in the gut, so this stool test is more sensitive than the standard blood test.

You can have the tests done without a doctor's order, and they're reasonably priced.

Their website is www.enterolab.com.

[ShayFL]

I've used Enterolab and I believe it is helpful. However, the blood already shows Celiac, so it would be a waste of money for the stool. However, a genetic test is a good idea. It DOES NOT dx Celiac. Just to be clear. But if your daughter has Celiac gene(s), this is just one more piece to the puzzle to keep you firm in your decision to go and stay gluten-free for life.

Try to get your Doc. to order the genetic tests through Promethius or the like. You pay insurance premiums for a reason.

[Lisa]

With a history of digestive issues, an endoscopy exam could look for other concerns aside from Celiac Disease. I think it might be wise to pursue in adults, as well as a colonoscopy.

In young children, it's another issue. And a personal choice. As mentioned by Jestgar, if the diet is unsuccessful after a reasonable amount of time, I would pursue other testing, with the help of a medical doctor.

[Fiddle-Faddle]

I'd look at the worst case scenario on both sides of the issue.

What is the worst that can happen if you try the diet without the endoscopy?

(Depends on whether any other issue would have been seen in the endoscopy, or if they even would have been looking for it, since they are only looking to confirm celiac at this point.) Also--how likely is it that there could be another issue going on?

What is the worst that can happen if celiac is the issue, but you go ahead with the endoscopy?

Honestly, there IS a risk that she can seize on the table. Children have been known to die during routine procedures involving sedation. It is a small risk, but it does exist. There are also risks of MRSA and other infection--these risks seem to be increasing at quite a clip these days.

Unless there is a clear indication that something else BESIDES celiac is going on, I could live with myself for trying the diet and finding down the line that we need to look for still more answers. But I wouldn't be able to live with myself if something happened in the OR, especially if we had such a clear answer with blood work.

[happygirl]

The endoscopy/biopsy can look for other concerns/issues besides Celiac, as well.

[poobelly]

Well we went to the Pediatric Gastro specialist and he said that my daughters numbers were high

and that the biopsy confirms if she has celiac disease or not and it would look for more:

damage

mucus

inflamation

allergy problems

ulcers

be a reference point

and anything else they see would be told for us.

I questioned the accuracy of the test and he said they take 5 samples to help make it accurate.

He gave Examples that the inside its not like some villi are fine and others are 50% damaged.

It more like the villi will show 50% damage in one spot, more damage in other spots and flat on another.

I realize its always a risk to be put under but i also think this is a very large commitment

since it is a hard, expensive diet (I think) and It is for LIFE. Even larger I dont want to miss anything else that my be going on with my little sweetie. Im not sure if those numbers are saying more could be wrong. ill be researching more and calling the doctors office. Its so hard to ask all questions when your in the office visit.

Thanks for all the replies. Its greatly appreciated and has helped a lot.

Kelly

[Mom2Twins]

I had a positive EMA and TTG and I also wondered whether I, as an adult, should biopsy. I understand that it is different as a adult vs a child but...

I think your GI is right. I'm sure people will disagree with me, but the only way to be sure of celiac is a positive biopsy plus positive bloodwork. I didn't think having a positive biopsy would matter much to me, but it did. It removed all of the nagging doubts in my mind that said, "maybe it really isn't celiac". There is a good article on this site entitled, "So Why Do Celiacs Still Need Biopsy?" :

https://www.celiac.com/articles/978/1/So-Wh...FACG/Page1.html

Also, I believe that children can can conscious sedation rather than go completely under. See this article:

https://www.celiac.com/articles/19/1/Should...opsy/Page1.html

I have a personal interest in this, as (as my name suggests) I am a Mom to 14 month old twins. My son has had stomach issues since birth, and we are about to start keeping a diary of his food intake and stomach reactions, as my GP wonders if he has celiac also. So we may be facing this decision in the future also.

I found this article, written by Dr. Robert Issenman, on penny.ca. Here is what he has to say about children and biopsies:

"Implications for children with Celiac Disease All of this may be interesting but you might ask why this matters. the first reason is that many individuals are first diagnosed with celiac disease in childhood when the condition is particularly dangerous. As the child grows, the reaction to wheat or gluten products becomes less obvious convincing parents that the child grew out of celiac.

The truth is that a child diagnosed by the reaction to symptoms could represent one or two situations. Either he/she never had celiac disease in the first place and is needlessly kept on the diet or the child is truly celiac but comes off the diet when he/she outgrows symptoms. Either situation is inappropriate. A definitive diagnosis of Celiac Disease presently needs to be proven by biopsy rather than intuition.

Many children are still wrongly put on restrictive diets by untrained but well unintentioned professionals. Sometimes, this is done by doctors or nurses who don't have an appreciation of the special needs of infants and children. It is an ongoing goal of the Canadian Celiac Association to support the continuing education of health professionals and this campaign is working."

Please keep us updated on your situation, and don't hestitate to ask questions.

[Fiddle-Faddle]

My only problem with his advice is, if her blood work numbers are high, but the biopsy shows no damage, what then? Would he assume that she then doesn't have celiac? With high levels of antibodies in the blood? Would he say that she can go ahead and eat something that her body is already making antibodies for?

As many here have said on other threads, the biopsy can rule celiac in, but it can't rule it out. Especially on young children, who may not YET have developed the kind of villi damage looked for.

[Mom2Twins]

My only problem with his advice is, if her blood work numbers are high, but the biopsy shows no damage, what then? Would he assume that she then doesn't have celiac? With high levels of antibodies in the blood? Would he say that she can go ahead and eat something that her body is already making antibodies for?

As many here have said on other threads, the biopsy can rule celiac in, but it can't rule it out. Especially on young children, who may not YET have developed the kind of villi damage looked for.

Agreed. Some doctors do follow that line of thinking. My GI did. He said if I was negative there would be no reason to test my children. ????!!! Luckily I have a great GP, who, as of yesterday is watching my son for celiac since I am celiac. And I did test positive on the biopsy as it turned out.

However, it sounds like your GI is pretty much on the money. They will be able to make sure nothing else is going on with your little one, and they will always have a baseline report. Chances are, there WILL be some damage, even if it is subtle, and an experienced doctor will identify it. Then you won't run the risk of starting your child gluten free but wondering if it is really celiac, and then you will have to have your child back on gluten to test, and you don't want to do that.

It sounds like you have a good doctor. My advice would be to educate yourself as much as possible about the disease. As you know, we as parents have to be our children's advocates. There is a lot of good information out there. Look for books on celiac at Health Food Stores. Also, there is a doctor named Dr. Rodney Ford who is a pediatric gastroenterologist, and a celiac specialist. He has a website called Dr.Gluten.Com, and his information is really easy to understand (you can tell he works with kids). He also has videos on youtube, and books for sale.

All the best!

[poobelly]

Sue thanks for the information on that website. I will check it out.

We made an appointment for the biopsy for next Thursday the 20th.

I understand both sides and appreciate all the information

but I need to know that we have looked at all aspects and done everything

to make sure we haven't missed anything else going on.

I know that there are only a few stories of people greatful that they did the biopsy and find out there were other problems, as little as it my be I want to know.

This is a very hard decision when none of it is cut and dry. I know she mostly likely has celiac disease

but after crying over getting Jets pizza deliver tonight I know we're doing the right thing for my little sunshine.

Ill let you know what happens. The test results wont be back for about 4 days after the biopsy day.

Kelly

[Fiddle-Faddle]

It's very easy to make gluten-free pizza from scratch (many recipes on this site, I'll be happy to send you mine if you need it), and it's just as fast as delivery--faster, if you cheat and use corn tortillas for the crust. No more need for tears!

[ang1e0251]

I know the gluten-free diet seems ovewhelming at first but it is not that bad. It doesn't have to be expensive either. Definately don't cry over pizza! We can all help you with shortcuts and recipes. Just have the faith that you can do it, look at all the people on this forum who did it. You have the greatest motivation to succeed, the health of your child.

[poobelly]

sorry Tues 11-25-08 is biospy.

The Gas. specialist is also asking that i get a bone age test done which she had done when she was 4 and it was within 2 standard deviations of her chronological age. So Ill keep you updated.

Kelly