18 Month Old Being Tested

[mavsmomma]

Hi, I'm new here! I have an 18 month old daughter who has been sick off and on since birth. She was an AWFUL infant who screamed and cried ALL the time. I was gluten and dairy free while breastfeeding her. She constantly has diarrhea and will get rashes that bleed from it. When we introduced wheat(cheerios) to her it made her bottom bleed. We waited a few more months and reintroduced them to her. She seemed to be ok on them and since about 12 months has been eating with no restrictions.

Fast forward to 16 months old and I realized she has not gained ANY weight in the last few months along with the constant diarrhea. I took her in to the Dr and he did a celiac panel and stool cultures. Her stool came back positive for 2 infections which were treated but she still has diarrhea. She is irritable all the time. She has a distended belly, NO appetite, refuses most foods, etc. All classic celiac symptoms she has. Her blood work also came back as this...

IgG.......more than 100 with a negative of >11, so very positive. Her IgA was negative though. He didn't do a total IgG etc because of her age. Her bloodwork also showed that she is anemic.

She dropped from the 60% percentile for weight and BMI to below the 10% in 6 months.

anyways, she is scheduled to see a pediatric GI but not until January 18th. A whole month away! We are so confused as to what to do. I want to start the diet immediately but I know it would ruin any tests the GI does.

based on her blood results and other symptoms would you just assume she has celiacs or just wait for the GI appt? She still hasn't gained any weight. No one else in my family has celiac that we know of but we have a huge history of Type 1 diabetes and Rheumatoid arthritis. I also have IBS but was never tested for anything just told by the dr based on symptoms that its IBS so I could possible have celiac. Thank you for ANY help and advice!!

McKenzie

[tarnalberry]

I would call the GI ahead of time and get their opinion. Personally, I would take my daughter gluten free in that situation. It's important for babies to continue their growth, not just physically, but neurologically, and I wouldn't want to continue stunting her growth. Without a total IgA, the antigliadin IgA test is worthless. You have positive blood work, positive symptoms, and a positive response to the diet.

[mavsmomma]

I would call the GI ahead of time and get their opinion. Personally, I would take my daughter gluten free in that situation. It's important for babies to continue their growth, not just physically, but neurologically, and I wouldn't want to continue stunting her growth. Without a total IgA, the antigliadin IgA test is worthless. You have positive blood work, positive symptoms, and a positive response to the diet.

thanks. I was under the impression though that a total IgA is useless under the age of 2? So the IgG is enough to say that it's a positive blood test right? I am still trying to figure this all out!

McKenzie

[sassiskull]

O my... Your poor baby I was in your shoes exactly last year at this time. My daughter was 2 and all her blood work came back positive. Her symtoms however were not that bad, so I chose to keep her on the gluten diet until her biopsy. However It sucked everyday! Id feed her mac n cheese and cry (even though she didnt actually eat it, she didnt eat a thing ever), It killed me! With your daughters symptoms being that bad I would call the GI and ask them to move up the biopsy. This way you can start the diet sooner. The thing that killed me was they said they may get a negative biopsy if my daughter was gluten-free, that she had to continue to consume gluten to get a positive, She never ate as it was anyway! So did it really make a difference to make her suffer any more. It did take my daughter time to trust food again, she still is learning. She may just be a picky eater but I think if I had issues with food probably from 8 months on I would be picky too. Hope the best for your little one :)and hopefully they can move the date up.

[Lunabell]

I agree. Definitely call and ask to speak to the dr's nurse or assistant. I have found that really helps for getting in earlier. My heart is breaking for you. My oldest wouldn't/couldn't eat at that age. I would just sit there and cry trying to get her to eat anything. It is a very important period of your daughters life for getting the nutrition she needs for her body and brain to develop. They should be able to fit you in faster in light of that. (((Hugs)))