New Here - My Three Year Old Is Just Diagnosed

[kellyanna-99]

Hello all.

I'm just getting acquainted and familiar with celiac. I did begin to wonder due to hereditity a my paternal grandmother had it (deceased) and aunt has it. My daughter who just turned 3 has celiac (most likely). She started with strange diaherra about last September that did not got away, foul smelling beyond belief, odd skin rashes and extremely irritable (the complete opposite of how she always has been). We have made the rounds with to the allergist to check for milk allergies or other allergies and then to the pediatric gastroentologist. The next step is the biospy after a positive blood test, but our family doctor (the gastro referred back to him) doesn't want to put her through a test, if doing the diet will make it better. Which sounded fine to me, but now I'm wondering after reading, if she does need the biopsy for a baseline (it seems to be the way to go by most). I've contacted the celiac of Canada association to get some more specifics of the diet sent to us, and am wondering if I need to see a dietician as well. She also seems to have an intolerance to milk, despite the allergy report coming back negative on it. So, I've decided to go with lactose mik, but she seems to handle to more processed cheeses and yogurts.

Is it true breastfeeding offers protection from celiac for the duration and afterwards? I breastfed her until she was 23 months old and weaned in Christmas of 2006, and we started to notice issuse with her around Sept 2007.

I have three other children (5 year old twins, and an 11 month old) is it likely they could have it, or could develop it ( he is still breastfed)? I do have some concerns similar with my 11 month old, in that he has the same vile bowel movements that my daughter has. All of my kids have had "gut" issues, severe acid reflux as infants requiring medicatiion and wondering if there is a relationship?

What else? I'm am curious about the hereditiy of the disease. I undestand it is an autoimmune disease due to some reading I've done online. Is it tied to other auto-immune disorders? There is diabetes, arithitis and thyroid conditions, in addition t celiac in our family background, and I was wondering if there is a link with all of that.

I have a lot more questions, and will be sure to ask more in the next bit as w settle in with this.

Thanks.

Kelly

[Darn210]

OK . . . I'll make an attempt to address some of your questions . . .

While breastfeeding is good at preventing/protecting against allergies, it does not protect/prevent Celiac disease. Celiac is not an allergy. Your 11 month old can indeed be suffering from gluten issues if you are eating gluten while breastfeeding.

Acid reflux as an infant in itself is not necessarily alarming . . . lots of infants have acid reflux . . . but couple that with other gut and bowel movements issues and family history and you definitely have reason to investigate celiac as a possiblity.

The fact that your doctor is wanting to try the diet as a diagnostic tool is actually quite good. Blood tests and biopsies have a lot of false negatives especially in children. If your doctor is willing to diagnose based on the diet, I say go for it. Lots of people with Celiac have a temporary lactose intolerance as the area that processes lactose is the first part of the intestine to become damaged. And some people with Celiac actually have a dairy (casien) intolerance which may or may not resolve itself after going gluten free/casien free for a while.

Autoimmune diseases seem to run in packs so it is not surprising to hear you list additional health issues in your family.

At the beginning, it seems daunting to take your family gluten free. But I assure you, it does get easier.

Good Luck. Welcome to the forum. You have found a fabulous resource.

[kellyanna-99]

Thanks for answering my questions! That is goodto hear about the biospy, that it might not be necessary at this age due to false positives. His thinking is, if we see a dramatic improvement with the diet, then that is our answer.

About the breastfeeding, I know celiac isn't an allergy, but I had read that it offers some protection against the onset of symptoms and was wondering if others had found this to be true.

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My 11 month old certainly isn't affected weight wise (he's 24 pounds - came out at almost 10), but he has had bowel issues from the get go. He was constipated as a very young infant (3 weeks without a bowel movement - even for breastfed babies, that is long), and now it is switched to going a lot and it is vile smelling even for a bowel movement!

That is interesting about the dairy, and I hope it resolves.

Again, thanks for the information.

[Pattymom]

There is some research that breastfeeding provides protection against autoimmunie disorders including celiac, Krohns' disease, and a few others. That is not to say it prevents it or that a Bf baby won't react to gluten. I did need to remove gluten from my diet with my dd which showed a huge change in her stinky, mucousy poop. Best thing I ever did, as I felt great once I had done it, had my own blood work and tested positive. I also have Lupus, and the info on that shows a high percentage of "gluten antibodies" Onc eyour immune system gets reactive it can cause a multitude of symptoms. I also found in research that autoimmune disorders can take a variety of forms in different family members, like you noticed. My brother had Krohn's disease, my mom severa eczema.

Anyway, my dd had been gluten free until age 2, and not until she stopped nursing a lot around 2 1/2 did she stop growing. Her blood work was negative at 2 and again now at 3 1/2, but we are trying the gluten free diet again anyway. So far she is responding in only a month.

Hopefully it goes well for you,

Patty

[debmom]

Your family history sounds like mine-- arthritis, diabetes, ulcerative colitis and thyroid-- and a daughter who was breastfed for almost two years. We didn't introduce solids until she was about six months. She also had terrible problems with constipation, and acid reflux. She was tentatively diagnosed with crohns disease at 11 and now shows no sign of it, but has obvious gluten issues. None of her blood work was positive for celiac, but both her colonoscopies showed severe gastritis, obvious irritation. After much trial and error, we discovered that gluten was the trigger for the severe pain she had for seven months (Misdiagnosed with ovarian cysts, etc.) and once she went off gluten, a host of problems began to get better. She is now 16, gluten free for almost a year, and better. But she also has been diagnosed with several autoimmune diseases in the last year. I wish we had known something about gluten intolerance and celiac years ago, and maybe she wouldn't have gotten so sick. Gluten free is not as hard as it seems at first. My whole family is almost all gluten free now, and they actually like the gluten free foods more than the others often.

Good luck. Reading your note was like looking at our situation 14 years ago. At least you are on the right track early!

[dandelionmom]

I've read the research about breastfeeding and celiac disease and it seems like breastfeeding is one of the few things you can do to help. I breastfed my daughter until she was 15 months and (looking back at her medical records) that is about the same time we started bringing up concerns with her health that are all symptoms of celiac disease.

The research and our personal experience is why I plan on nursing my third child as long as possible.

I'm not sure how the genetics all work but I do know it is important for you to have your other children tested and yourself.

[CeliacMom2008]

I was just reading this week about breastfeeding and Celiac. The article said that research seems to be showing that breastfeeding can lessen some of symptoms of Celiac - specifically growth symptoms. I know we are just one case, but I nursed my son until he was 2. He's now 8 1/2 and was just diagnosed in December. One of the things that doctors kept telling us (for 8 years) was that he was a healthy thriving child in the 95th percentile for height and weight - despite loose stools every day. When I read the article it was a light bulb moment - I believe that breastfeeding very well may have been what helped him to grow so well. He still had other symptoms, but we didn't put them all together until after diagnosis (and after they went away).

I can't find the article I was reading right now, but I'll post its link when I do.

Good luck to your family!

[Nancym]

Anyone with an autoimmune disease has a much higher chance of having celiac disease too. The causality isn't established yet, although it seems pretty clear in my mind that if your body is under siege constantly from antibodies created in reaction to food proteins, it could start responding to other body proteins (which causes autoimmune diseases). Plus there is that whole "intestinal permeability" thing that gluten causes.

[taweavmo3]

Welcome to the board! This is a great place to begin, I have learned so much in the past few years. Like others have said, I think if you have a doctor willing to diagnose your dd on blood test and diet response alone, go for it. In my experience, most doctors will not do that until you have a positive biopsy.

I have one daughter who is biopsy diagnosed, and not too long after I put all of my kids on the diet. My other two had varying symptoms, but they weren't as sick as my daughter, and their blood tested negative. And as for my toddler, I now believe that we are all better off w/out gluten or casein, so she's on the diet too, lol. She did have nasty reflux as a baby, so I figured she didn't need anything else to make it worse.

We also have auto immune diseases running through my side of the family, and my oldest child has full blown psoriasis that began when he was 3. It is a nasty skin disease, and although I know there are much worse things... I still feel awful that he is going to have to deal with it for the rest of his life. Anyway, my point being, if you think your other children may have a gluten sensitivity or Celiac, don't hesitate to try the diet for them too. It's much easier to prevent damage or future auto immune diseases rather than treat after the fact.

Good luck with whatever you decide....it's a tough spot to be in, and many of us have been there before. So, you came to the right place!