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16 Mo. Old Ds Just Diagnosed W/celiac

Disney323

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Disney323 Apprentice
Disney323
Posted

This is my 1st post and I'm glad I found this site. I am sure I will get most questions answered. The only reason we had our son tested was because he has no interest in eating and doesn't gain much weight. He is currently 19 lbs. He has had no other symptoms. Normal bowel movements, no tummy aches that we know of, no vomiting and doesn't seem to be in any type of distress. Dr. said 1 part of the test was an abnormal # and the other 2 parts of it were normal. Whatever that means. He is being sent for a biopsy in 2 weeks. I am so nervous. What can I do while we wait? TIA

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Lisa Mentor
Lisa
Posted

TIA:

First, welcome to the Board. Second, there are many mothers or family members with young children that have celiac issue, or just issues.

I also am glad that you found us. The knowledge is here.

happygirl Collaborator
happygirl
Posted

Disney:

Welcome to the board...I am happy you have found us!

His results could indicate that your child has a problem with gluten, which is probably Celiac.

Your child needs to continue to eat gluten before the biopsy. Do not start the diet until after the biopsy. Talk to your son's doctor and ask to have the full blood panel run. There are FIVE parts to the Celiac panel. You want the bloodwork and biopsy run while he is eating gluten. You also need to make sure that the GI takes multiple biopsies in multiple sites in the small intestine. Celiac can be a patchy disease. A biopsy can rule "in" Celiac but cannot rule "out" Celiac, because the damage can be easily missed. To ensure a better chance, multiple biopsies from multiple locations are needed.

Here is the link to the full tests. Dr. Green is a leading Celiac researcher and physician at Columbia University and this is their website:

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm The reason that it might be worth it to have the full testing done, is so that you have done it while he is eating gluten, and don't have to go back at some point to "challenge" gluten. At the very least, it is worth printing out the info about the tests, the importance of using all five tests, and discussing it with your doctor.

Celiac patients vary GREATLY in their symptoms....from severely debilitated to absolutely no symptoms, and everything in between (mild to moderate to not nice at all!). Some people have diarrhea, some constipation. Some gain weight, some lose weight. I think these contradictions indicate why Celiac is called a "medical chameleon" and often hard to diagnose.

All this being said....there are people who don't have Celiac but have non-Celiac gluten intolerance. They don't have the intestinal damage, but still have a problem with gluten. The Celiac panel does not test for gluten intolerance. So, even if the results are negative by chance, it still might be worth it to try the diet. Plus, testing in children under 2 is difficult, as their immune system is still developing...so he *could* have Celiac and it not show up on the biopsy. The bloodwork and his symptoms indicate *something* is going on....and it very well could be a problem with gluten. I think trying the gluten free diet would be worth a shot, no matter what.

Best of luck, and let us know what we can do to help!

Laura

rez Apprentice
rez
Posted

I agree w/ previous posters. I would ask which tests were run and which test was abnormal. There are two blood tests that are very specific to Celiac and two others which can mean many other disorders as well. Good luck.

jayhawkmom Enthusiast
jayhawkmom
Posted

I find it interesting that they would test a child so young, who had no symptoms. Do you or your husband have Celiac? So many doctors are clueless about Celiac, so I'm just fascinated to read about one who sent a kiddo with no symptoms for testing.

Bravo to your doctor!! =)

My older son was sent for testing at 2, because he was failing to gain weight. He weighed 24 lbs at one year... he weighed 24 lbs at 2 years. The blood tests, from what I was told, were negative. At 8.5 - he had positive blood tests, much to my dismay.

I agree with the others, you need to get a hold of the actual results of the blood tests, it seems as if there are missing pieces ... and you need to keep your little one on a gluteny diet until after the endoscopy.

There are actually 5 parts to a Celiac panel. Some doctors will only look at a portion of that... others will consider the whole picture.

You should see results for:

tTg

Gliadin Antibodies - IgG & IgA

EMA

and total syrum IgA.

The gliadin antibodies are often "dismissed" by some doctors, although... clearly they indicate an autoimmune reaction to gluten, with or without Celiac disease. However, when it's only the IgG anti-gliadin antibody that is positive, it usually requires further investigation. My daughter and I are examples of that. Endoscopies came back clear for villi damage, yet... other "damage" consistent with latent Celiac.

My older son had positive tTg, IgG, & IgA antibodies. Combined with a positive dietary response and the total disappearance of a DH type rash once gluten free.... it's pretty obvious.

Gosh... I'm rambling here, sorry about that!!!

Once you have your baby's results.... if neither you or your husband are Celiac, you might want to have some testing done yourselves. One of you very well may be.

Best wishes to you.

Disney323 Apprentice
Disney323
Posted
  • Author

Thanks to all of you who responded to my post. I spoke with my son's dr. today and she said that the IGA and serum came back normal but the one specific for celiac (which I have no clue what it is) came back at 97% and it should be only about 19%. Neither my husband or I have Celiac (that we know of) I do suffer IBS and am wondering if it has anything to do with it. We will both be tested once our son is confirmed. I will go into the GI with many questions. Thank You very much!

jayhawkmom Enthusiast
jayhawkmom
Posted
Neither my husband or I have Celiac (that we know of) I do suffer IBS and am wondering if it has anything to do with it.

Celiac is very often misdiagnosed as IBS!!!

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Kibbie Contributor
Kibbie
Posted
This is my 1st post and I'm glad I found this site. I am sure I will get most questions answered. The only reason we had our son tested was because he has no interest in eating and doesn't gain much weight. He is currently 19 lbs. He has had no other symptoms. Normal bowel movements, no tummy aches that we know of, no vomiting and doesn't seem to be in any type of distress. Dr. said 1 part of the test was an abnormal # and the other 2 parts of it were normal. Whatever that means. He is being sent for a biopsy in 2 weeks. I am so nervous. What can I do while we wait? TIA

My daughter is 23 months currently and was diagnosed with Celiac Disease at 18 months old. Fruits and veggies are safe to eat and from there it will depend on what your son likes to eat!

what does he like to eat?

Disney323 Apprentice
Disney323
Posted
  • Author

what does he like to eat?

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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