What To Do First

[Minnie2]

After researching and talking to others, I believe my child could have Celiac Disease.

First a little history

He is FFT but I like to call it FTG (failing to gain or failure to grow)

because he otherwise happy, strong, loving the world, and thriving. Although

his speech isn't coming on too fast and he will be evaluated again

when he turns 2. This could be GERD related he has had a heck of a time.

He's been at or bellow 3rd percentile since he was nine months old (now 17 months old)

He has GERD, but I believe we are more on the GER side of things now, and the reflux

is actually masking what really could be going on.

He's never been a puker. Never has had diarrhea, only a few runny stools his whole life.

Constipation and bloating on the other hand is a whole other ball game.

He eats really well now, but there was a time when his GERD made him not eat. From 2 to 6 months he didn't eat well at all, but once the GI helped us out with meds and such, he began eating.

The introduction to solids brought on a whole new challenge for us. This is when the bloating (sometimes painful, sometimes not) started, and barely cereal has been and was a huge staple! Solids went very slowly as I tried to figure out what made his reflux flare. Lot's of ups and downs.

Then by 9 months things look great. He's eating very well and our "no no" list was smaller and smaller. Constipation seemed to be a thing of the past.

This is when (even though his growth had been iffy all along, he stayed between the 10 to 25 percentile range) he started falling off the chart. Makes no since, finally eating like he should but falling downward in growth? (still gaining though. The only time he lost weight was way back when he was around 5 months old. He lost 4 lbs in 3 weeks, but gained it all back quickly after the GI helped us) So I have been trying to come up with why, and this is how I ended up here.

My first (of possible millions LOL) Question is

Diagnoses first, or try the diet for a while and see if he improves?

I want to do this right, and the diet kinda scares me a little with his growth being so poor.

His last ped would completely go off on a nut if she knew I was even thinking of doing this. She thinks I am restricting his diet right now (which I'm not). I left her for obvious reasons and haven't seen the new doc I picked for him yet. I have a feeling though that the fact he is a small town doctor, and a family practice guy (not a ped), that this whole Gluten free diet idea that I have isn't going to fly. So I'm not sure what to do next.

And is there a sample gluten free toddler diet out there somewhere that I could just check out real quick. Gluten free seems so overwhelming to me right now. The lists are so long and intimidating. I just want to cry.

Thanks for listening

and any advise you can give would be appreciated.

[Minnie2]

Sorry I had a hard time finding my post so I thought I would give it a bump up.

[jams]

IMO, if you want a diagnosis, do the testing first. If you cut gluten out of the diet, testing will be negative even if he has celiacs. You will need to put him back on gluten for the testing to be accurate. The problem with that is.... if he is doing well on a gluten free diet and then you reintroduce it, he may be misserable which will make you miserable. If you don't care about a diagnosis, just change his diet.

Good luck!

[mrsnj91]

I am kinda in that boat right now. We are on a wheat free trial diet with the allergist to check for wheat allergy but in the end she went gluten free due to an allergy to Barley, not being able to find wheat free oats (amd I think she has a problem with them too) and not eating rye! She has done well and now we go back to the allergist and I can't ask for the blood test unless I put her back on wheat. Now I have to talk about what our options are.

So I agree. I would try the testing 1st and then the diet. JMO!

And in regard to your child not eating well....it has been a struggle but I have found breads, crackers, cookies. etc for my DD and she is just turmed one. She is actually eating better and more for me on this diet. Mix it in with fruits, meat and veggies and she is getting a rather good diet.

I would begin by asking to see an allergist with your dr. Allergists do not specialize in Celiac but you are more likely to get your dr to send you to an allergist and the allergist can test there. Then he will recommend a GI. Just a thought on how to get around the dr. Really, my ped. never mentioned allergy or Celiac. They really don't know. But I pushed for the allergist and from here we will head to the GI depending on the results. Might help.Certainly can't hurt.

(P.S typing with a toddler on my lap...excuse type-os )

[mommahawk]

Hi Minnie,

I'm new to this board. My 22-month-old son was just diagnosed by biopsy with celiac disease. Ever since he was weaned he has had diarrhea and at 18 months he was diagnosed as "failure to thrive". He is about in the 15% for height but his weight and head circumference are less than 3%. Although I'm not an expert and I am still in the learning stages myself (and really not in a place to offer advice ), I would say that with your son's failure to thrive and GERD, celiac disease is definitely something to check out. My son also has an "expressive" speech delay. We're currently working with a speech therapist and nutritionist through our state early childhood intervention program.

My son had the full celiac blood work panel done at 19 months old and the doctor initially told me they were negative for celiac disease. About a month later, my ped came back and said "well, actually his results were borderline and I want you to go see a Ped GI" The GI wanted to do an endoscopy and take some biopsies from his small intestine. He had that done Feb. 15 and they called today to say the biopsy was positive. We (my son and I) started the gluten-free diet on Feb 20.

My advice to you would be to go with your gut as a mother. Family, friends and doctors thought I was crazy when I kept pushing for testing and wanting to go with the gluten-free diet. But I knew that something was not right, with his failure to thrive, diarrhea, and speech delay. It's only been a week on the diet and I already notice a difference in my son's bowel movements.

I think the second day we were gluten-free, I was depressed. But as I read somewhere and I just kept telling myself, "Focus on what we CAN have, not on what we can't". It can be overwhelming to know where to start, but I just went through all my cabinets and separated everything out into gluten-free, not gluten-free, and "need to check on". There are so many great lists now on the web to guide you in forbidden and safe foods/ingredients.

My son used to eat cheese and crackers for a snack and now he eats cheese and apples.

We basically eat the same lunch as before: hot dogs (we eat Jennie-O turkey franks), apple sauce, and fruit.

For dinner, we center our meals around meats and veg, like grilled chicken, steamed broccoli, potatoes, or taco salad using 100% corn tortilla chips, McCormick taco seasoning, etc.

God bless, Minnie, and above all use those motherly instincts!!!

[shayesmom]

Hi Minnie! I am glad to see that you found this board for further help in determining if celiac's might be the culprit behind your son's issues. The people here are amazing!

I think that you need to go with your "gut" instinct on this. If you would be more comfortable with an official diagnosis, then you should pursue those routes first. However, you have to keep in mind the fact that the biopsy can be inaccurate....especially in children under the age of 5. And you also need to understand that a non-positive biopsy cannot rule Celiac out....only in. Even with a "negative" or inconclusive biopsy, Celiac's can still be a very real possibility.

We had started the GI route with my dd. Her blood tests came back negative for Celiac's. However, she was having so many issues with gluten-containing foods and FFT (FFG if you will), that dh and I decided that no matter what the biopsy showed, we were giving the diet a shot instead of waiting 2 months for a biopsy. Within 2 days, we had our answer and KNEW that dd needed to be on a gluten-free diet. We never considered putting her back on gluten in hopes for a positive biopsy as the results would be the same.....adherence to a gluten-free diet. Even if her biopsy had come back negative, we understood that for whatever reason, she did better on the diet. And so for us, it didn't matter whether or not the disease was officially diagnosed. And quite honestly, with insurance rates being the way they are, we decided it may be in dd's best interest to not have a formal diagnosis that could affect future health insurance costs and coverage for her (being a "pre-existing" condition).

However, with that said, I can tell you that there is often a mental and emotional struggle without a formal diagnosis as you do often wonder if perhaps your child really isn't a celiac. I have had those nagging doubts on several occasions. Especially in light of the fact that my dd does "okay" with trace amounts of gluten exposure. But the more I read into this disease, the more I realize that for many, the biopsies just aren't sensitive enough to find the proof and quite often, YEARS of suffering go by without any concrete answers. And I also personally know several other moms whose children had negative blood work AND negative biopsies and yet their children responded positively to the diet.

To me, there is a whole lot of room for error with the current methods of testing and to top it off, there is no way of determining the cases of non-Celiac gluten enteropathy via biopsy. Your child could be sensitive to gluten and NOT a celiac. So what does the biopsy gain you should that be the case? I think that in addition to posting on this parents board, you should read some of the posts in regards to doctors and celiac's diagnosis. Some of the posters there have gone DECADES without being properly diagnosed. If nothing else, they may be able to point you to a competent GI doc.

Sorry if this doesn't really answer your question. But I think it's important for people to get the facts as well as the pros and cons for the options available. I know that the diet does seem intimidating in the beginning. I made it all of three days at first and then realized just how large this issue really was. But it really did get better with time and once I found the gluten-free products that we liked, it's not been that bad. I finally baked my first loaf of bread today with a minimal amount of time invested and better results than store-bought brands! lol!! These days, I don't even think about gluten in our food at home. And as for going out, check out PF Chang's and Outback Steakhouse. More and more restaurants are catering to gluten-free diets. It's not as bad as you may think.

HTH and good luck in whatever you decide!

[Guest nini]

my daughter was 3 1/2 when she was tested (I say this loosely because the Dr. did not do the Celiac Panel tests and therefore her tests are irrelevent) I had already been positively dx'ed with Celiac several months earlier and she had all the symptoms that I had as a child, also GERD, Failure to Thrive, tiny... anemic, hypoglycemic, vomiting and diarrhea. She also had behavioral issues that went beyond typical toddler tantrums. Her ped. GI said that she just had IBS and for her to eat "more whole wheat" , her pediatrician agreed with me to try the diet and see how she responded. She has done phenomenally well. Today she is a very healthy well adjusted soon to be 6 year old.

I would say to go with your instinct and try the diet. I have no doubts that my daughter is at the very least "gluten intolerant" and will need to be gluten free for life so that she does not ever develop the full blown Celiac that I have. (had?!) I do not want her having to deal with any of the same health issues I've dealt with all my life.