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

4 Yr Old With 3 Positive Celiac Panels - No Symptoms

CrysK

Recommended Posts

CrysK Newbie
CrysK
Posted

Hello -

My 4 yr old dd was dx'd with T1 in July and they did a routine celiac panel on her which came back positive. However, she is symptom-free so the Pedi Endo decided to do the panel 2 more times just to be sure, which both came back positive.

We now have an appointment in December with the GI specialist to discuss what happens next. I know the only way to truly diagnose celiac is with a biopsy but we really don't want to expose her to something like that unless truly necessary.

So I have a couple of questions. First, is it possible for her to have 3 positive celiac panels but NOT have celiac? If so, what would the odds of that be? Second, would it make sense just to go with a gluten free diet and skip the biopsy? The only problem with this is that because she's asymptomatic, we won't see a difference if the diet is "working".

Any other suggestions?

Thank you in advance!!

Crystal

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted
First, is it possible for her to have 3 positive celiac panels but NOT have celiac?

I would say NOT ....false negs are very rare - add to the fact that she has Type 1 diabetes and I'd have to say she absolutely has it (celiac disease & T1 are genetically linked)

There are some T1's on this board who were asymptomatic and were picked up by routine screening

The biopsy is a personal choice ...and as long as you are sure you can implement the diet without the 'gold diagnosis' then don't bother with it.

You say you wouldn't know if the diet is working - but what you will see is (hopefully) her blood sugars easier to control

Good luck :)

Darn210 Enthusiast
Darn210
Posted
I would say NOT ....false negs are very rare - add to the fact that she has Type 1 diabetes and I'd have to say she absolutely has it (celiac disease & T1 are genetically linked)

There are some T1's on this board who were asymptomatic and were picked up by routine screening

The biopsy is a personal choice ...and as long as you are sure you can implement the diet without the 'gold diagnosis' then don't bother with it.

You say you wouldn't know if the diet is working - but what you will see is (hopefully) her blood sugars easier to control

Good luck :)

What she said . . .

My daughter's GI doc thinks that it will be a matter of time before a positive blood test is all you need because you just don't get false positives . . .

(Edit: oops . . . said negative meant to say positive but I've fixed it now :) )

Green Eyes Rookie
Green Eyes
Posted

Hello CrysK,

My information is my opinion - take it as that. I believe your daughter has celiac with the support of the positive blood work. If my child were 4 years old, I would not put him thru the biopsy, but I would begin a gluten free diet immediately. There is a world of information on this website as well as very educated celiacs. Depend on them - they are wonderful.

I'm still in the learning stages as well, but it is becoming second nature. I also was asymptomatic. Now that I am gluten free I know when I have had gluten. That was one of my concerns in the beginning. BUT - you will know. Even though there are no outward symptoms of celiac there is still damage being done on the inside. The longer your daughter continues to eat gluten the more damage will be done. Consider yourself fortunate that you have been able to find this without the numerous ailments that go along with celiac. By eating the gluten free diet your daughter can always be healthy!!!

Jennifer

ek327 Newbie
ek327
Posted

I have to disagree with the previous writers. I think the biopsy is the best way to go.

primarily to determine if there is damage, and what extent. My 7 year old had it, and it really wasn't so bad. she went to sleep, and when she woke up, it was done and we had our answer. In addition, down the road, there will be no question as to the diagnosis.

I know it is invasive and all that, but I would recommend the diagnosis. information is always better.

happygirl Collaborator
happygirl
Posted

It may be particularly useful to have the testing done, esp if there are no symptoms. Having it 'definite' in your mind may help with adherence to the diet.

ShayFL Enthusiast
ShayFL
Posted

I agree that the biopsy can be a good tool to help you adhere to the diet. But keep in mind that you CAN have Celiac with POS bloodwork, but the biopsy can come up NEG because the damage is not significant enough yet to show villi damage (or they didnt take enough samples or in the right places as damage can be patchy). BUT SHE STILL HAS CELIAC based on the blood. Since she does not have symptoms, it is very likely the villi will seem fine. BUT SHE DOES HAVE CELIAC. If your decision about a gluten-free diet will be based entirely on the outcome of the biopsy, you could make a grave mistake. You cannot ignore 3 POS blood tests. Especially since so many children under 6 with Celiac cannot get a POS blood until they are older. The fact that she shows POS at 4 really says something. IT IS CLEAR.

What posters meant to say is that there are rarely "false positive" and not "false negatives". "False negatives" are actually quite common. "False positives" are not common.

You should ask for genetic testing for your DD. And then for you and DH. This is another piece to the puzzle.

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

Celiac.com Sponsor (A8-M):


Guest Mommy2aiden
Guest Mommy2aiden
Posted

having a deff DX may be helpful with things like getting the school to provide a lunch ( which they have to) and i hear that you can even write off the special foods as medical if you have a DX

Darn210 Enthusiast
Darn210
Posted
What posters meant to say is that there are rarely "false positive" and not "false negatives". "False negatives" are actually quite common. "False positives" are not common.

Oops . . . that was me . . . I went back and fixed it. Thanks Shay.

Just a little of my experience followed with my opinion:

My daughter's endoscopy went extremely smooth. At that time, we weren't even considering Celiac, we were looking for something else. So, while the doc took a couple of biopsies, he didn't take that many and "officially" she did not have villi damage. However, she did have reduced sugar processing. Her primary GI doc diagnosed Celiac with a positive blood test and the reduced sugar processing. The second opinion doc concurred just because of the blood test.

Now for my opinion . . . I was in major denial during the whole process. As it turned out, the blood test was taken while she was "out" during her endoscopy. If the blood test had been first, I probably would have wanted the endoscopy just to help me come to terms with it. As I look forward (said sarcastically) to working with the school system, I would want a doctor's official diagnosis behind me (if I could get it) to help me fight what ever battles I get into. If your doctor is willing to give the diagnosis without the endoscopy, that's something else to consider. There's no right or wrong answer. Do what you've got to do to put it to rest in your mind . . . 'cause if you're not "buying" the diagnosis now, you're not going to be able to "sell" it to her later.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.