Help! Newly Diagnosed 6 Yr. Old. Some Questions...

[Sierra's Mommy]

Hello:

I have a six-year-old daughter, who was diagnosed Celiac on Friday, through a blood test. She has had several symptoms:

--Slow growth

--irritability

--bone pain

--constipation

--distended belly

--diarrhea

--gas

--headaches

--stomach aches

We have an appointment with a Ped GI--but not for a month! This world is so foreign to us, and it seems like I've been trying to get up to speed by logging on every celiac site the entire weekend. I have two main questions, which just can't wait until we see the specialist next month.....

She has been gluten free (we think--we are amateurs, after all) since Friday evening, although the diarrhea has lessened, it is still present. Not sure if I'll send her to school tomorrow. How long does it take (on average) for the intestines to heal after being glutened?

And secondly, are there any tips--hidden, common foods, you can provide to us to get us up to speed a little quicker?

I am so happy to have found this site. The first thing our ped told us was to find a support group. This site seems like the answer!

Thanks for any help you can provide regarding these two questions!

~Sierra's Mommy

[debmom]

It took six weeks for my daughter's symptoms to go away almost completely when we started the gluten free diet. And we were very strict about the diet. Be patient. It can take up to 2 years to fully recover our doctor told us.

[cruelshoes]

Welcome to the club. My son was diagnosed at age 6 also. It all seems like too much to deal with in the beginning, but before too long you will have things figured out. There are always details to be managed, but you will do fine.

First and foremost - your daughter has a preliminary diagnosis. Generally, the diagnosis is confirmed with an endoscopic biopsy. That is why you are being referred to the GI doctor. The biopsy cofirms the presence of villi damage that is alluded to by the bloodwork. You need to keep your daughter on a full gluten diet until after the biopsy is over. If what you want is the "gold standard" diagnosis, you should not remove gluten until the testing is complete. Some people will elect to skip the biopsy and just go gluten-free, but that is generally not the preferred course of action.

This link may be of use to you - So Why Do Celiacs Still Need Biopsy? By William Dickey, Ph.D., M.D., F.A.C.G.

Secondly, after the biopsy is complete, you will want to decontaminate your kitchen and learn how to read labels. Here are some links you may find helpful:

Open Original Shared Link

Safe/Unsafe food ingredients

[sugarsue]

Although I am sorry your daughter has celiac, congratulations on the diagnosis. You should start to see improvement soon and it will just continue to get better and better. Plus, what seems hard right now regarding sticking to the diet will become second nature. You will be an expert!

My daughter had many of the symptoms you mention Her bad gas and stomach pain was much better within the first week and she has finally started growing after 6 months on the diet. We still struggle with her loose stools/diarrhea but it no longer has the horrible "gluten" smell!

Anyway, I just wanted to welcome you. I know you will find the help you need here!

[Sierra's Mommy]

Thank you so much for your replies and support! You sound so confident and wise in your suggestions; I hope to get to that place someday. As mentioned, we are still a little overwhelmed right now. We had an appointment for four weeks out, but since she is so miserable on gluten, I called and asked them to move the appointment up (okay, I strongly suggested). I should know tomorrow when her appointment is now. After some research, I see it is probably best to keep her on gluten until the diagnosis is confirmed. Thanks again for your support. I look forward to becoming an active member on the site.

~Julie

[CeliacMom2008]

As you wait for the biopsy, you can gather a lot of knowledge so that you can hit the ground running as soon as it's over. It is overwhelming...incredibly so. You really need to just accept that for a couple months life will be tough at times, but I PROMISE it gets so much easier. It really does. This is a dramatic lifestyle change, but it really doesn't have to be a BAD change. My son will be the first to tell you he's A-OK with being a Celiac. I've learned to be a great cook - and I used to be a terrible cook and didn't really care for it too much (especially because I had to eat what I made!! Blech!). Arm yourself with knowledge, keep a stiff upper lip, remember to stay positive, and HAVE FUN!! Your child may soon be on the way to a happy, healthy, gluten free life!

[Woody6]

Welcome to the club. My son was diagnosed at age 6 also. It all seems like too much to deal with in the beginning, but before too long you will have things figured out. There are always details to be managed, but you will do fine.

First and foremost - your daughter has a preliminary diagnosis. Generally, the diagnosis is confirmed with an endoscopic biopsy. That is why you are being referred to the GI doctor. The biopsy cofirms the presence of villi damage that is alluded to by the bloodwork. You need to keep your daughter on a full gluten diet until after the biopsy is over. If what you want is the "gold standard" diagnosis, you should not remove gluten until the testing is complete. Some people will elect to skip the biopsy and just go gluten-free, but that is generally not the preferred course of action.

This link may be of use to you - So Why Do Celiacs Still Need Biopsy? By William Dickey, Ph.D., M.D., F.A.C.G.

Secondly, after the biopsy is complete, you will want to decontaminate your kitchen and learn how to read labels. Here are some links you may find helpful:

Open Original Shared Link

Safe/Unsafe food ingredients

I just want to update the celiac community...the article as to why a biospy is needed is not correct... there is no such thing as a false positive celiac panel in bloodwork.

Just recently a GI specialist presented a session on Celiac disease. They have reclassified celiac disease into 3 categories.

Symptomatic Celiac Disease where they have positive blood test & manifest lesions in the intestines.

Silent Celiac Disease where there is minimal symptoms with damaged mucosa & positive blood test.

Latent Celiac Disease where they have positive blood test results but normal mucosa in the GI tract.

The people with Latent Celiac given the "right" circumstances, will develop mucosal changes at some point in time. This could be a virus, stress, or some other event they don't even know (much like what triggers type 1 D).

If a person has a negative Celiac Panel Blood Test result then there are other conditions to look for BUT a positive Celiac Panel Blood Test puts a person in one of the 3 above categories.

The golden standard for diagnosis still remains the Biopsy. However the goal is to diagnose without invasive procedures. (does this mean to forgo the biopsy?)

There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac.

[Woody6]

Hello:

I have a six-year-old daughter, who was diagnosed Celiac on Friday, through a blood test. She has had several symptoms:

--Slow growth

--irritability

--bone pain

--constipation

--distended belly

--diarrhea

--gas

--headaches

--stomach aches

We have an appointment with a Ped GI--but not for a month! This world is so foreign to us, and it seems like I've been trying to get up to speed by logging on every celiac site the entire weekend. I have two main questions, which just can't wait until we see the specialist next month.....

She has been gluten free (we think--we are amateurs, after all) since Friday evening, although the diarrhea has lessened, it is still present. Not sure if I'll send her to school tomorrow. How long does it take (on average) for the intestines to heal after being glutened?

And secondly, are there any tips--hidden, common foods, you can provide to us to get us up to speed a little quicker?

I am so happy to have found this site. The first thing our ped told us was to find a support group. This site seems like the answer!

Thanks for any help you can provide regarding these two questions!

~Sierra's Mommy

generally speaking we are not to go gluten free until after the biospy but the medical community may be changing its tune and it certainly is not neglegent of anyone to refuse the biopsy and just go gluten free. You have already seen positive results and I'm sure you may be wondering why would you want your sweet child to continue to suffer by eating gluten just to do the biopsy.

There is no such thing as a false positive Celiac panel (blood work) but I will tell you the higher the number out of range the more likely there will be damage to the intestines if gluten remains in the diet. The problem when the numbers are not significantly out of range....such as could be with the the lanent celiac where there are symptoms but not the necessary villi changes in the intestines. If we stuck with the biospy it could come out negative (false negative) and then the doctors will try to tell you the child can eat gluten and keep suffering in the process.

I think another poster provided great links to read on the different names for gluten and where they like to hide.

[cruelshoes]

I just want to update the celiac community...the article as to why a biospy is needed is not correct... there is no such thing as a false positive celiac panel in bloodwork.

Unfortunately, Woody6, that information is incorrect. There are indeed false positives on the celiac bloodwork, specifically on the TtG and AGA IgG. Here are some links I posted in another thread earlier in the week. You may find them informative.

Open Original Shared Link

It is important to note that some people with Type 1 Diabetes, Hashimoto

[Woody6]

Unfortunately, Woody6, that information is incorrect. There are indeed false positives on the celiac bloodwork, specifically on the TtG and AGA IgG. Here are some links I posted in another thread earlier in the week. You may find them informative.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There may come a time when the bipsy is not a part of the diagnosis process. But as of this point, we are not there yet. Please cite your source for the statement that a false positive is impossible.

CHILDREN'S HOSPITAL OF PHILADELPHIA

BOSTON CHILDREN'S HOSPITAL...

OF THE TOP OF MY HEAD....

would be the cited sources.

It is true...there is absolutely NO false postive in a celiac panel. Read the notes from the lecture.

[cruelshoes]

CHILDREN'S HOSPITAL OF PHILADELPHIA

BOSTON CHILDREN'S HOSPITAL...

OF THE TOP OF MY HEAD....

would be the cited sources.

It is true...there is absolutely NO false postive in a celiac panel. Read the notes from the lecture.

Listing hospitals is not the same thing as citing sources. How can we read the notes from the lecture if you don't provide a link? Clearly, from the links I posted above, false positives are possible.

[Woody6]

Open Original Shared Link

the link above tells you of the three types of celiac. Only ONE TYPE will provide the lesions within the biospy that is required for the golden standard of diagnosis.

I was at the teaching hospital during the actual lecture and they specifically stated there is no such thing as a FALSE POSITVE in a celiac panel HOWEVER there are tons of FALSE NEGATIVES in a biospy.

The biopsy remains the golden standard of diagnosis ONLY BECAUSE living a gluten free diet is very restrictive and lifelong.

Why suffer through a biopsy when it has a tendacy for false negatives when simply going gluten free and all aliments are elivated would be enough.

Just my opinion.

To make a very long story short.....

I have one child that had the lesions on the intestions and has the golden standard of diagnosis. I have another child that did not have the lesions on his intestions so he got a false negative.

BOTH children had positive celiac panels. BOTH children have a Celiac Diagnosis

Both children are gluten free and doing wonderful.

Matter of fact they just got their annual blood work done at the children's hospital just this past Monday.

[Woody6]

Listing hospitals is not the same thing as citing sources. How can we read the notes from the lecture if you don't provide a link? Clearly, from the links I posted above, false positives are possible.

The medical community is always updating its findings. I'm just sharing the most recent findings. Biopsy is still the golden standard of diagnosis....but did you even know there were three types of Celiacs? Probably not....because the only type of celiac that will produce the required lesions on the intestines is the sympotomaic celiac. The other celiacs are denied the diagnosis because they haven't gotten to the point of the lesions yets....why would we want to continually suffer UNTIL the lesions manifest itself when we can get better quicker by simply removing gluten from our diet?

[cruelshoes]

Open Original Shared Link

the link above tells you of the three types of celiac. Only ONE TYPE will provide the lesions within the biospy that is required for the golden standard of diagnosis.

Nowhere in your link does it state that the biopsy should not be done. In fact, on slides 19 and 20 it states that part of the diagnosis process is having the biopsy. The visual of the iceberg with regard to celiac and its related manifestations is not new. Will there be a time when the biopsy is not recommended? Maybe. But that time is not now.

[Woody6]

Nowhere in your link does it state that the biopsy should not be done. In fact, on slides 19 and 20 it states that part of the diagnosis process is having the biopsy. The visual of the iceberg with regard to celiac and its related manifestations is not new. Will there be a time when the biopsy is not recommended? Maybe. But that time is not now.

So what you just did was circumvent the whole thing....a negative biospy does not mean a person does not have celiac disease. Maybe you should reread the information from the live lecture and from the link....

you are saying the bisopsy is the ONLY diagnosis of celiac....that is untrue and dangerous to keep touting as fact. Dangerous to anyone with a positive celiac panel and a negative biospy....because REMEMBER.....there are THREE CATAGORIES OF CELIAC....THREE....only ONE gives the lesions on the intestions.....THREE CATAGORIES OF CELIAC....in case you missed it...there are THREE CATAGORIES OF CELIAC...CELIAC....the only way to treat it is to go gluten free....why in heavens name would we continue to ingest gluten and continually damage our bodies just so we can finally get to the point of the lesions on the intestions...why in heavens name should we? This is why the community is changing its tone about celiac and making people aware there are three types of celiacs because it seems the medical community may lean towards less evasive procedures such as foregoing the biopsy...they haven't completely yet but they are leaning towards it.

Thank heavens my children go to the number one children's hospital in the united states and they don't require the golden standard to diagnosis the children with celiac....positive Celiac Panel = positive for celiac....one of the three listed below for your reading pleasure. My doctor still does the biospy but does not use it as the sole sourse of diagnosis because she is up on the latest news in the medical field and KNOWS there are three types of celiacs and UNDERSTANDS that telling the parents the kids don't have celiac (when they do) just because they haven't developed leisons yet is basically unethical and cruel to the kids and the parents who live with the kids.

Just recently a GI specialist presented a session on Celiac disease.

They have reclassified celiac disease into 3 categories.

Symptomatic Celiac Disease where they have positive blood test & manifest lesions in the intestines.

Silent Celiac Disease where there is minimal symptoms with damaged mucosa & positive blood test.

Latent Celiac Disease where they have positive blood test results but normal mucosa in the GI tract.

The people with Latent Celiac given the "right" circumstances, will develop mucosal changes at some point in time. This could be a virus, stress, or some other event they don't even know (much like what triggers type 1 D).

If a person has a negative Celiac Panel Blood Test result then there are other conditions to look for BUT a positive Celiac Panel Blood Test puts a person in one of the 3 above categories.

The golden standard for diagnosis still remains the Biopsy. However the goal is to diagnose without invasive procedures. (does this mean to forgo the biopsy?)

There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac.

[cruelshoes]

So what you just did was circumvent the whole thing....a negative biospy does not mean a person does not have celiac disease.

No, and that is not in question. A negative biopsy does not preclude celiac. Your statement was about the bloodwork and the fact that there can be no false positives. That is wrong. That is why the biopsy is done, in an attempt to confirm the bloodwork.

you are saying the bisopsy is the ONLY diagnosis of celiac....that is untrue and dangerous to keep touting as fact.

Never have I said that a biopsy is the only way to diagnose celiac. Diagnosis is generally a 3 step process.

-positive bloodwork

-positive biopsy

-improvement on the gluten-free diet.

Individual cases may have some combination of the three. But the biopsy is a part of the diagnostic process. Some people decide not to have the biopsy, and that's great. But that is not the recommended sequence of events.

I respectfully ask again - please cite your source for this statment:

There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac.

[Woody6]

No, and that is not in question. A negative biopsy does not preclude celiac. Your statement was about the bloodwork and the fact that there can be no false positives. That is wrong. That is why the biopsy is done, in an attempt to confirm the bloodwork.

Never have I said that a biopsy is the only way to diagnose celiac. Diagnosis is generally a 3 step process.

-positive bloodwork

-positive biopsy

-improvement on the gluten-free diet.

Individual cases may have some combination of the three. But the biopsy is a part of the diagnostic process. Some people decide not to have the biopsy, and that's great. But that is not the recommended sequence of events.

I respectfully ask again - please cite your source for this statment:

As I've said REPEATED...I was at a LIVE LECTURE when that statement was made....out on the diabetes forums nurses at the same lectures quote the SAME THING...but if you want to refuse to believe it that is your choice. I cannot make you believe it.

waiting for a positive biopsy is senseless and darn right CRUEL....if there are THREE TYPES OF CELIACS in which I've already provided you with the CITED SOURCE....then there are THREE TYPES OF CELIACS and all of them have A POSITIVE CELIAC PANEL IN BLOOD WORK.

keep asking it wont' change the truth. You are just being stubborn.

[cruelshoes]

Sticks and stones, my friend.

I have posted 3 sources that say a false positive is possible. Being at a live lecture and giving us second hand information about what you heard is not adequate evidence to state that the biopsy is no longer a part of the diagnosis process.

Be well.

[Lisa]

"only ONE gives the lesions on the intestions....."

Lesions? That's new to me. Is there another reference that might be more familiar to me?

"There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac. "

[Woody6]

Sticks and stones, my friend.

I have posted 3 sources that say a false positive is possible. Being at a live lecture and giving us second hand information about what you heard is not adequate evidence to state that the biopsy is no longer a part of the diagnosis process.

Be well.

It is very sad that you continually refuse to believe the cited source I did give you. The most recent source. If the panel is positive you have one of the three characteristics of celiac....shame shame shame and shame on you for refusing to listen. It saddens me greatly. There is only ONE of the celiacs that produce the lesions you demand. That is the ACUTE celiac. My whole arguement is if the panel is positive and the source tells you it means you have one of the three celiacs then you have celiac. Just because the medical community will only officially diagnosis at the ACUTE stage of celiac is not only unethical it is down right cruel when simply eliminating gluten will correct the symptoms and prevent you from ever reaching the ACUT stage where lesions develop...

so very sad that you continue to be this way....very very very sad.

[Woody6]

"only ONE gives the lesions on the intestions....."

Lesions? That's new to me. Is there another reference that might be more familiar to me?

"There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac. "

It's my understanding that false negatives were common.

(would someone please let me know how to double quote! I screw it up every time;) )

we are discussing the bloodwork...celiac panel specifically. if it is negative then the doctor needs to look elsewhere but if the panel is positve then the person has one of the three characteristics or stages of celiac....that I listed. Only the symptomatic stage or acute stage (I personally call it acute) in which there will be actual lesions on the intestines that will show up on a biospy. The other two stages or characteristics of celiac will not produce the lesions on the intestines so when a biospy is done it will come out as negative for celiac and that is not true. All it means is that the person hasn't gotten sick enough to have the lesions develop but they will get the lesions over time if they continue to ingest gluten. It is just a matter of when..... The doctors still use the lesions as their golden standard of diagnosis when they should not. Their arguement is because living gluten free is a life long very restrictive diet. That is the arguement for the lesions being necessary for the golden standard of diagnosis but the community is slowly changing course to diagnosis will less evasive means which may mean they will forego the biospy as the 'golden standard'.

Once a person is a celiac or has had a positive celiac panel and has been completely gluten free for a year and a new celiac panel is done then at that time the celiac panel should be negative. All that means is the person successfully removed gluten from their diet it does not mean it is a false negative or that they no longer have celiac disease.

[The Kids Folks]

Hey Gang-

Let's not forget how this topic started - we have a new mom with a newly diagnosed 6 yr old on board and she is looking for some help.... remember when you first found out by testing or not testing, through trial and error, diet, miserable doctor, etc etc. how difficult this can all feel in the beginning?!

Let's help her and not make the entire situation feel worse. However it is discovered, diagnosed etc all I can say is our family has been gluten and wheat free for almost 6 months. And yes, we have had tough days, what to buy in the grocery, how to handle a bday party, what to do for school lunch, but when we look at how far we've come we take a deep breath and thank the heavens that we now know what the problem is regardless of how it was diagnosed!! We can see our kiddos feeling healthier every day, we can see that the brightness in their eyes has returned and the hugs are even bigger and better than before.

So Sierra's Mommy - give yourself and your daughter a great big hug! There is lots and lots of support here for you, regardless of how you came to be here!

The Kids Folks

[cruelshoes]

It is very sad that you continually refuse to believe the cited source I did give you. The most recent source.

A pdf file from 2005 does not a current source make.

Because I am a glutton for punishment, I checked out some of the other information on the site you posted. Lo and behold, guess what I found?

Open Original Shared Link

How is celiac disease diagnosed?

A diagnosis of celiac disease means the individual must stay on a strict gluten free diet for life. Following such a diet strictly is not always easy as there are many hidden sources of "gluten". A gluten free diet may also involve added cost to the individual and impact their quality of life. Therefore it is essential that your physician confirm the diagnosis before recommending life long adherence to the diet.

Celiac disease may go undiagnosed for years. Blood tests are widely used to test for celiac disease. Both the anti-tissue transglutaminase antibody (tTG) and the anti-endomysial antibody (EMA) tests are highly accurate and reliable but are insufficient to make a diagnosis. Celiac disease must be confirmed by finding certain changes to the villi which line the small intestine. To see these changes, a tissue sample from the small intestine is obtained, using a procedure called an endoscopy with biopsy. (A flexible tube-like instrument is placed through the mouth, down the throat, past the stomach and into the small intestine to obtain small tissue samples).

So your own site that you posted recommends the biopsy. It states that the bloodwork is highly accurate, but does not state that the bloodwork has no chance of having false positives.

so very sad that you continue to be this way....very very very sad.

Feel free to have the last word. I'm quite OK with my sad little self. Apologies to the original poster for the topic drift.

[Woody6]

A pdf file from 2005 does not a current source make.

Because I am a glutton for punishment, I checked out some of the other information on the site you posted. Lo and behold, guess what I found?

Open Original Shared Link

So your own site that you posted recommends the biopsy. It states that the bloodwork is highly accurate, but does not state that the bloodwork has no chance of having false positives.

Feel free to have the last word. I'm quite OK with my sad little self. Apologies to the original poster for the topic drift.

it states if the celiac panel is positive you have one of the three celiacs...how is that hard to understand or compute? That concludes that a positive panel is not a false result but rather one of the three celiac stages....a no brainer to me and it is not off topic....it answers some questions the parent had or at least gives the parent the most up to date information so not to be misinformed.

It states only the symptomatic stages produces lesions...the other two do not, hum - a no brainer to me...kind of conclusive if you take the entire lecture as a whole.

and please reread all my posts where did I say that the biospy is not still the golden standard of diagnosis? Where? show me. all you are doing is circumventing the issue.

[Woody6]

it saddens me that you continually refuse to accept there are three levels of celiac two of which produce no lesions....but it is still celiac.

absolutely amazing and yes very sad.