We're New Here

[ntsouk]

Hello All,

I have spent the last 2-3 hours poking around on this site (thanks to my mother-in-law who sent me the link). Here is our story:

My mother-in-law has celiac, her son (my brother-in-law) has celiac, her other son's daughter (my niece) has celiac and my husband's test results came back as a high positive for celiac.

So, I had my three kids tested, even though I was only vaguely suspicious of my middle 7 year old daughter. I got the results today and her endomysial test was positive (I wasn't told the number). I do know that the IgA level was drawn with it for accuracy (I think). The pedi told me that it wasn't an "absolute" and we need to now follow up with a pedi GI. Thankfully we live near Boston and we have an appointment in Children's next month. But in the meantime, I asked the pedi what else would cause the elevation and he said, an inflammatory respons in the intestines. Wouldn't that be celiac? I asked if the strong family history made a difference when reading the test results, he said yes.

So now I'm confused. What does the bloodwork need to read as for there to be more than a strong suspicion? How accurate is the endomysial test? Do people have false positives with this test? My daughter has vague symptoms and doesn't always complain of an upset stomach, although she has been more frequently (a few times a week).

My husband and I are not sure if we will go forward with an endoscopy. There is a strong family history and if someone could tell me how accurate her tests are, we may choose (based on her results) to go gluten free anyway. We don't see the pedi GI until 7/21 and I'm trying to make a decision if I change our lives now, or do I wait to see the doc - especially when I'm not sure on the endoscopy. (Oddly enough, my husband's GI appt is the same day).

I would love some answers, insights and guidance. Clearly this is a very special group here and I'm hoping to gather some strength from all of you.

Many thanks in advance,

ntsouk

[luvthelake21]

Just wanted to say hello and welcome to the forum, sorry no one has welcomed you yet but I am glad you found us. I do not know the answers to your question but there are people on this forum who will help you. My 13 year old was diagnosed 3 years ago by blood work and by a biopsy. When the doctor told us to have the biopsy I did not think twice about having it, now if I new then what I know three years later I might not had it done. I just thought I should do what the doctor told us. It does get easier my daughter goes to girl scouts camps for weeks at a time so it is a doable diet. The one thing that has helped her with school is having a written letter from her doctor. Since Celiac falls under the American Diability Act it allows her to be able to take her own food to different events like camps, school field trip, classroom parties and such. Feel free to ask more questions

[luvthelake21]

I just tried to snd you a PM and you setting is turned off. Just thought I would let you know since you just joined.

[LexsMama]

I dont know anything about the blood tests but just wanted to say

[LexsMama]

I was wondering why you regret having the biopsy done? My son just recently had a biopsy and now i am worried does ti cause problems later?

[shayesmom]

So now I'm confused. What does the bloodwork need to read as for there to be more than a strong suspicion? How accurate is the endomysial test? Do people have false positives with this test? My daughter has vague symptoms and doesn't always complain of an upset stomach, although she has been more frequently (a few times a week).

Usually, you can post the lab results on here as many posters are able to help interpret them. There are some doctors who feel the gluten-free diet is "impossible" and so they do not even hint at going gluten-free until Celiac is confirmed by biopsy.

As I understand it, false positives are extremely rare, but possible. Generally, false negatives are more common. Biopsy can also provide false negatives.

I was wondering why you regret having the biopsy done? My son just recently had a biopsy and now i am worried does ti cause problems later?

LexsMama, don't worry about the biopsy causing problems later. The "issue" with the biopsy here is in questioning it necessity or role as the "gold standard" in Celiac diagnosis. The gold standard can produce false negatives and many have suffered for years with Celiac because of the inaccuracy of the tests. The full Celiac blood panel can be 100% accurate in detecting Celiac (depending on marker levels). When certain threshold levels are surpassed, many here question the role of biopsy because it isn't really necessary.....it's viewed as extra money to a specialist when the answer is already known. In the case of strong hereditary factors and positive blood work....it isn't too far a stretch to think Celiac is the problem. Biopsy is like getting a second or third confirmation after the initial one.

[mommida]

Welcome to the board!

It is a hard decision to have the biopsy. You don't want to put your child through something that has risk (routine procedures still have risk, it is an out patient procedure and a lax attitude makes me get more nervous ) ~ especially if you feel you have your answer.

The biopsy will tell you if there is damage, if the damage is Celiac related, and how much damage there is, it can also rule out other disorders.

There are other disorders that have symptoms very similar to Celiac, and symptoms for other disorders can improve on a gluten free diet. There are other disorders that have a corrolation to Celiac. (H.Ploryi infection)

Going through the biopsy will give you more information of what you are dealing with, and hopefully will rule out others disorders.

[ntsouk]

Thank you all for your responses. I spoke with my daughters pedi today and she said that there was no number associated with the endomysial test, just neg or pos, and she was pos. She thought that the pedi GI would want to run the full panel of blood work, so don't change anything in the diet yet.

Then I talked to the pedi GI. I told her the test was positive and she said that based on the family history she was most likely positive, but the "gold standard" is the endoscopy and that is what they will want to do (and not run the full panel). I have an appt on 7/21, I told her that I wasn't sure that was the route we were going to go. Her point was that if my daughter only has "vague" symptoms that it was going to be really important to know for 100%, because not only will her diet change - but there will be recommondations for school (because of arts and crafts and handling certain paints, glues, etc.). I did not realize that this could also be a concern, so I have decided to stay open minded until the appointment, (open minded and overwhelmed). She also said that we would discuss the implications for my other children, which I know that they are at an increased risk - but I wonder just how much of an increase? Another point that she made was that even if I am familiar with the diet, we will see a nutritionist because her needs are much different than an adults (which I get).

Is there anything, other than the obvious about diet, that I should think about discussing?

Thank you all again,

Nicole

[luvthelake21]

I knew some one would have some answers for you they are great here. My experience with the nutritionist is by the time we got in to see her I already knew more about the diet than she did. She told my daughter and I that it would be okay for to have one peice of a flour cake once a yeay on her b-day then I had to explain to my 10 year old that she was wrong"but mom the lady said I could". The thing that gets me is they find out what is wrong wth your child (thank God) then put it in her medical history to carry with her for the rest of her life. We never had my husband tested for that reason, we are self employed and insuance cost to much anyway. By the way where are you from?

[ntsouk]

We're (fortunately) from the Boston area, (about 30 minutes out in the suburbs). My husband was tested because he kept getting gout and it just seem really odd (and there is a strong family history on his side). It's crazy because I told my husband that I wont be comfortable until I know the physiology of the disease (I'm a nurse/L & D), and probably I will be a small expert by the time we sit with the nutritionist.

I'm feeling better today about the diagnosis. I think I became so overwhelmed that my mind was running in a million different directions. A good night sleep can work miracles!

Nicole

[seezee]

Hello All,

I have spent the last 2-3 hours poking around on this site (thanks to my mother-in-law who sent me the link). Here is our story:

My mother-in-law has celiac, her son (my brother-in-law) has celiac, her other son's daughter (my niece) has celiac and my husband's test results came back as a high positive for celiac.

So, I had my three kids tested, even though I was only vaguely suspicious of my middle 7 year old daughter. I got the results today and her endomysial test was positive (I wasn't told the number). I do know that the IgA level was drawn with it for accuracy (I think). The pedi told me that it wasn't an "absolute" and we need to now follow up with a pedi GI. Thankfully we live near Boston and we have an appointment in Children's next month. But in the meantime, I asked the pedi what else would cause the elevation and he said, an inflammatory respons in the intestines. Wouldn't that be celiac? I asked if the strong family history made a difference when reading the test results, he said yes.

So now I'm confused. What does the bloodwork need to read as for there to be more than a strong suspicion? How accurate is the endomysial test? Do people have false positives with this test? My daughter has vague symptoms and doesn't always complain of an upset stomach, although she has been more frequently (a few times a week).

My husband and I are not sure if we will go forward with an endoscopy. There is a strong family history and if someone could tell me how accurate her tests are, we may choose (based on her results) to go gluten free anyway. We don't see the pedi GI until 7/21 and I'm trying to make a decision if I change our lives now, or do I wait to see the doc - especially when I'm not sure on the endoscopy. (Oddly enough, my husband's GI appt is the same day).

I would love some answers, insights and guidance. Clearly this is a very special group here and I'm hoping to gather some strength from all of you.

Many thanks in advance,

ntsouk

At Children's in Boston try to see Alan M. Leichtner, MD (Open Original Shared Link) or someone in his group who specializes in celiac. We made the mistake of taking the first appointment and the GI just wasn't too knowledgeable about celiac. Many of the other GI's don't know very much about it. My daughter just went through the diagnosis there. When she first had a positive test she just seemed fine, but within about three weeks she really started to get sick and sicker. She had no appetite and only wanted to eat cheese by the third week. I think a positive blood test is about 94% accurate. That's what they told me at the endoscopy appointment. So there is a 1:20 chance it could be something else. Try to get everything done as quickly as possible bc if she has celiac it could get worse fast. When my daughter started to get sicker I called and complained and they had a cancellation and did the endoscopy the next day in Waltham. I think the endoscopy provided some helpful information and it really wasn't too bad. The hospital staff was really kind and it only took about 10 minutes in the waiting room and a day off of school. She has been gluten free for about four weeks and her energy is much better and she isn't so frail any longer.

[ntsouk]

At Children's in Boston try to see Alan M. Leichtner, MD (Open Original Shared Link) or someone in his group who specializes in celiac. We made the mistake of taking the first appointment and the GI just wasn't too knowledgeable about celiac. Many of the other GI's don't know very much about it. My daughter just went through the diagnosis there. When she first had a positive test she just seemed fine, but within about three weeks she really started to get sick and sicker. She had no appetite and only wanted to eat cheese by the third week. I think a positive blood test is about 94% accurate. That's what they told me at the endoscopy appointment. So there is a 1:20 chance it could be something else. Try to get everything done as quickly as possible bc if she has celiac it could get worse fast. When my daughter started to get sicker I called and complained and they had a cancellation and did the endoscopy the next day in Waltham. I think the endoscopy provided some helpful information and it really wasn't too bad. The hospital staff was really kind and it only took about 10 minutes in the waiting room and a day off of school. She has been gluten free for about four weeks and her energy is much better and she isn't so frail any longer.

Hi - That's EXACTLY who we're seeing!!! When I called for the appointment, they were trying a few of the satellite offices but it wasn's fitting in to my schedule. Then they asked me if I would see a resident and I said "No". So then, they asked me if I would see an NP who has been practicing for many years with the head of the dept (Leichtner) and I said yes. So we are seeing his NP. I'm excited that you have had a positive response with them! Thank you! Each little piece makes me feel much better.

Nicole