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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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    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      how long does it take for the genetic blood test for celiac to come back?

      By Scott Adams · Posted

      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi  Thank you, will tell her to do that
    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

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