20 Mos, Very Malnourished Looking, Any Advice Welcome!

[newmom07]

Hi,

My DS2 is 20 mos and we believe he may have celiac or an intolerance to wheat or something in that genre (sorry I'm still learning the distinctions). Here is a little about us, but if you have *any* feedback - things to ask the dr., things we should be doing, things we shouldn't do etc, I could really use some guidance from people who have BTDT. I am feeling very overwhelmed, and just want my healthy boy back - he is really sick.

DS2 was a healthy 10lb at birth and slowly slimmed down to about 50-75% for weight and 90% for height. After he began eating (around 8-9 mos) and moving more, he slimmed down more but stayed on the tall side. Since the flu season struck in October he has been sick at least 1 week every month and he has been sick 4 of the last 7 weeks (stomach bugs, cold/cough/fever etc). He looks sick and malnourished. He has no muscle tone left in his very skinny legs/buttocks/arms and has a large distended belly. He is generally a happy child, but he has been increasingly sad and cuddly and some days won't let his feet touch the ground. He is now waking up at night, uncomfortable, gassy, in pain. His poop often has undigested food and is usually wet/strange colors but isn't particularly fluidy. I was worried since he has been so sick and looks so unwell and I called the doctor and he has not gained any weight or height since he was 18 mos - bringing him now to 10-25% weight and 10% height. A friend mentioned celiac (she is a genetic counselor) and we have been reading everything we can. Then, on this forum, someone had posted a picture of her very ill little boy upon entry to the hospital --- it was like looking at our son. I've never seen another child who looks like him, and there he was, and well, let's just say we are convinced that this is more than just being exhausted from being so sick. Auto-immune diseases and severe food allergies are present in our family (my siblings/parents/their kids).

I will call our ped tomorrow and hope to get in early this week, but I don't really know where to begin - do we want testing? do we care about the biopsy? why do we need a diagnosis if we go gluten-free and it works? what else should we be ruling out/considering (it seems from what i've read that cancer is another possibility for our symptoms)? what else might we need to know about? should we just go gluten-free or do we need to go dairy free too? do we need an allergist and a GI specialist? what smart-mom things do i need to know (my SIL had good suggestions about keeping food on hand, frozen cupcakes to bring to birthday parties etc)? seriously, any advice you have, thank you, thank you for sharing with me.

-Betsy

[mushroom]

Ni, new mom, and welcome.

I am sorry your wee guy is so sick, and seemingly getter sicker. From what you have put in your post celiac/gluten intolerance sounds like the most likely cause of his symptoms, and would be the point from which I would start testing. As for whether or not to test, the blood test is very easy and while he is still eating gluten is a good time to do it. If you don't do it now he would have to go back on gluten for 2-3 months before testing. There is no way of knowing in a small child whether the test will show positive even if he is celiac, but if you can rule it in at this stage I think you should. For adults it is not so critical to have the diagnosis, but for children it is important to present evidence to the schools of his need to be gluten-free. Your pediatrician can order the celiac blood panel, which consists of:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptine (DGP IgA and IgG

Total Serum IgA

If the test is positive your pediatrician may well refer him to a pediatric GI for an endoscopy with biopsy. I know, this probably sounds like an awful test to put your wee fella through, and a lot of doctors are starting to skip this test, especially if the blood test numbers are high. And it is your right to decline this test and ask if he can be diagnosed on blood tests alone. But this is jumping the gun. First you have to get the blood tests.

If the blood tests are negative (and they are notoriously unreliable in toddlers) you and your doctors may possibly consider him to be non-celiac gluten intolerant and put him on the gluten free diet anyway. I know if it were my child that's what I would do. If his symptoms resolve you may even get a positive diagnosis based on symptoms, family history and response to diet. Sometimes they run the genetic testing for DQ2 and DQ8, the two genes most commonly (although not exclusively) associated with celiac disease. If he had a predisposing gene this would be further proof of the correctness of the diagnosis.

So if all this comes to pass, either way if you go gluten free and his symptoms do not resolve then you will have to start looking elsewhere. By the way, you will probably have to eliminate dairy from his diet initially, also, because the gluten damages the part of the small intestine that produces the enzyme to digest it.

Sounds like you have a good mentor in your SIL - use what she knows, it will be a big help.

Good luck in the diagnostic process if that is the route you choose.

[Dixiebell]

Hi, welcome to the forum Betsy.

With all of his symptoms it sounds like you need to take him in for celiac testing. Be aware that with young children the false negative rates can be higher. Also, while they are drawing blood for the celiac tests, I would go ahead and see if he is deficient in any of his vitamin and mineral levels too. Those can help with a diagnosis.

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG (this is a newer test)

[teresasupermom]

It definitely could be celiac. I would start with seeing about getting the blood test done ASAP. If you get a positive blood test then you got your answer. The blood test only takes about a week to get back, maybe sooner. If it's negative you can start a gluten free diet and see how he responds. If you have a history of autoimmune disorders and allergies though I would also see about screening for other autoimmune disorders and have allergy testing done. I have two kids with type 1 diabetes, 1 with celiac, and 1 with hashimotos thyroiditis so I am paranoid altogether now. Any time my kids get any strange symptoms I start running through my head all the different possibilities. I guess my point is make sure you keep your eyes open for anything that could be causing the problem. The symptoms you describe sure sound like it could be celiac so you are a smart mama for investigating this. I would start with all of that, see how those results come back and then move forward from there. While gluten could definitely be the culprit I'd start keeping a food diary as well and noting any responses to food.

[newmom07]

Thank you all so very much. Your responses were so thorough and helpful in our meeting with the Dr. today. I actually printed the thread and brought it with me. Our Dr. is ordering the celiac panel described above, a common allergen panel and a stool sample to check for malabsorption. Of course, our poor little guy's veins weren't cooperating today so we have to go back TH for another appointment and otherwise will have to go to the hospital's lab department if the nurses at the office can't get him.

While we were there, we found that he had swollen lymph nodes and a red throat, so we tested and sure enough he has strep (and he has been feeling *better* for 3 days now!) and so I brought his brother back and he does too, so antibiotics have begun. The best news was that they measured him at having grown 1 1/2 inches in the past 2 mos, so my complete freak out at his lack of growing is much relieved. I don't think the measurements are all that accurate, so I am going to start my own here at home. He has lost a little weight in the past 2 mos, but given the number of illnesses he has had, I am not surprised. I still think, given his distended abdomen and shrinking body, something isn't right, but I am relieved that we have started the process to find out what is happening.

I posted in the testing forum, but DH thinks this might be a good path for us: Open Original Shared Link Has anyone done the stool testing through this lab?

Thanks, again, for all your help - it really made a world of difference today!

[MacieMay]

Hi there!

I'm sorry your son is sick and I'm glad your pedi appointment went well.

I have not done any stool testing at Enterolabs but have thought about it.

My toddler daugther has a non-celiac gluten intolerance. She had all the same symptoms as your son but all her celiac testing came back negative. And she had ALL the testing (two celiac blood panels, biopsy and gene). Her symptoms started around 8 mos when she started eating more table food but because she was holding steady on her growth curve we couldn't get the Dr's attention. She is almost two now. We have been gluten-free for 4 months and she is soooooo much better. She has solid formed poops (never had one before). Hardly ever gets diaper rash (they were really really bad). Doesn't wake up at night crying anymore. I could go on and on. : )

Please remember... If your sons testing comes back negative it is still possible that he is having an issue with gluten. I am not a new Mom. I have two older healthy daughters, I knew right away that something was just not right with my baby and it was extremely frustrating trying to get the Dr.'s to see it and to get their attention. Finally, we got our gluten-intolerance diagnosis from our GI Dr. once we were off gluten and my daughter had a good reponse to the diet. Go with you Mommy instinct, it is usually right. Good luck!!

[Anya]

Hello Betsy,

I have also a 23 month old girl and we believe she is either celiac or gluten-intolerant. She was also very chubby as a baby, but dropped significantly in percentile after she started solids. She is now down to 3rd percentile. She had also a c.diff infection that lasted for 8 months. Our GI believes that Celiac could be the underlying cause. We have put her on a complete glutenfree and dairy free diet about 3 months ago. We had some strange emotional behavior that resolved completely (and quickly) on the gluten free diet. According to our GI, that is very typical for Celiac. We have been wanting to put her back on a gluten diet a few weeks ago to prepare for the endoscopy, but the emotional behavior returned. So, we decided to keep her off gluten for now and do a gluten challenge when she is 3 years old. I should also add that we did the Celiac blood tests, but they were negative. The celiac gene was however identified in our case.

You have received some good advice above on what tests should be run. Just keep in mind that the tests might be negative, especially if the igA levels are low (like in our case).

Do you have any other GI issues, like diarrhea or constipation?

Let me know if you want to discuss more or if you need any suggestion on good gluten and dairy free products. Just giving it a try is the best approach. Dairy and gluten free diet can treat so many conditions, not just Celiac.

You can also e-mail me directly, if you like (etravnik@aol.com).

Evelyn

[mommida]

Everyone has given great advice.

Get the Celiac panel done. You may consider the gene testing too. You and your doctor (pediatric gastroenterologist) will have to consider the endoscopy with biopsy. The endoscopy can help rule out or in other medical conditions. (There are a lot of medical conditions that do have a lot of the same symptoms of Celiac.)

My daughter's story is about the same onset. BF Started having problems when rice cereal was introduced (7months). Had several UTI's due to the explosive "D". Waited forever to get a refferal to ped. gastro. Height was increasing but her weight wasn't. Tried the gluten free diet because the ped. gastro. appointment was months away. Had to do the gluten challenge for the Celiac Panel. Had the panel done only one was positive, others slightly elevated. Well my daughter had another UTI from all the "D" started vomitting from the fever and antibiotic. She ended up in the hospital for 3 days needing an IV. It was determined she was too sick to get the endoscopy. Gene testing was positive for both DQ2 and DQ8. Diagnosed "probable" Celiac disease at 16/17 months.

Gluten free diet was working wonders until it seemed she was having gluten symptoms again! I was making myself crazy looking for CC or hidden gluten. Freaking out that school might be making her sick. It was getting even worse than the Celiac onset and she starting having GERD like symptoms and vommiting small amounts up to 8 times a day. She went in for a endo. w/ biopsy and was diagnosed with Eosinophilic Esophagitus when she was 6 years old. (She is 8 years old now and doing fine. We did an elimination diet and found she has to avoid eggs, fish, shellfish, peas, on top of gluten. She is public charter cyber schooled now.)

*So if you are doing the food journal Eosinophil reactions (that can occur anywhere in the GI track) take up to 12 days after exposure to a "trigger" food item.

*Make sure if your little one does get the endoscopy that "normal looking" tissue is tested for eosinphils. (There are enough of the same symptoms that eosinophilic involvement is possible and gluten may even be the "trigger" food.)

*Your child needs to still be ingesting gluten for the testing.

*When/if you start the gluten free diet, have your child's favorite treats on hand. If you can offer a choice it is a bit more liberating. Say it to your child like it is, "That will make you sick so would you like a treat or b treat?"

*Make sure you feel comfortable with your child's doctor. The doctor is not going to want to tell you all the things that an endoscopy can diagnose and with good reason ~ you would be a basket case of worry! But make sure they are testing "normal" looking tissue and the pathology is testing for eosinophils.

People here have life experience to help you through many things. You might find that while cyber space brings you someone who understands when your family and friends just don't get it.

I wish your little one a speedy recovery and you superhuman strength to make that happen!

cyber ((HUG))

[raeskids]

Hello Betsy,

I have also a 23 month old girl and we believe she is either celiac or gluten-intolerant. She was also very chubby as a baby, but dropped significantly in percentile after she started solids. She is now down to 3rd percentile. She had also a c.diff infection that lasted for 8 months. Our GI believes that Celiac could be the underlying cause. We have put her on a complete glutenfree and dairy free diet about 3 months ago. We had some strange emotional behavior that resolved completely (and quickly) on the gluten free diet. According to our GI, that is very typical for Celiac. We have been wanting to put her back on a gluten diet a few weeks ago to prepare for the endoscopy, but the emotional behavior returned. So, we decided to keep her off gluten for now and do a gluten challenge when she is 3 years old. I should also add that we did the Celiac blood tests, but they were negative. The celiac gene was however identified in our case.

You have received some good advice above on what tests should be run. Just keep in mind that the tests might be negative, especially if the igA levels are low (like in our case).

Do you have any other GI issues, like diarrhea or constipation?

Let me know if you want to discuss more or if you need any suggestion on good gluten and dairy free products. Just giving it a try is the best approach. Dairy and gluten free diet can treat so many conditions, not just Celiac.

You can also e-mail me directly, if you like (etravnik@aol.com).

Evelyn

Can you tell me more about the cdiff infection? My Samuel has an underlying infection (we believe) and we are seeing an infectious disease/immunologist next week.

Thanks!

[raeskids]

Betsy,

You have to really fight for your little one. My Samuel is 16 months old and it was a battle to get them to listen. I came in as the "nervous" mom and left as the "brilliant" mom who knew that her child was sick and had celiac.

I was getting the run around in the regular clinics. I had a friend who knew something was wrong, called her father-in-law (who is a pediatrician) and was referred to a new pediatrician who immediately sent him to the Children's ER. Samuel was barely awake at that point and was falling over while he walked.

The nurses knew something was wrong. His temp was 96.2, he didn't fuss with labs, etc... It still took a bit to convince those doctors.

I am so grateful that I did.

He was (and is) a sick boy. I can see his body healing, but his immune system is totally shot. We're working hard to get him healthy again.

Follow your mother's instinct.

Rachel

[Anya]

Hello Rachel,

we are still dealing with c.diff infections and Celiac could be the underlying cause. At first we had severe infections, the c.diff toxin test was positive and she had bloody diarrhea. Now the tests are coming back negative, but we still have a distinctive c.diff odor and I am convinced that it is still impacting her appetite and growth. In a laboratory text book I found the following description, which describes it perfectly "c.diff colonies have a distinctive odor reminiscent of a horse stable." in another section it says "...have a strong cow manure, barnyard-like, or horse stable odor". The stool color will also be yellowish.

According to our GI, who specializes in Celiac, it is not common for Celiac patients to have c.diff infections. However, Celiac can create a favorable environment for any pathogenic bacteria to overgrow. Once you have an imbalance of good and bad bacteria, it is difficult to correct that. Antibiotics will kill the bad bacteria, but also the good. You could try probiotics.

Let me know if you have any other questions.

Evelyn

Can you tell me more about the cdiff infection? My Samuel has an underlying infection (we believe) and we are seeing an infectious disease/immunologist next week.

Thanks!